J.A.C. Rietjens
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27 records found
1
Journal article
(2026)
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Evi M. Bakker, Sophie van Dongen, Erica Witkamp, Leonieke W. Kranenburg, Carin C.D. van der Rijt, Kate Lorig, Natasja Raijmakers, Janneke van Roij, Judith Rietjens, More Authors...
OBJECTIVES: Patients with advanced cancer are increasingly encouraged to self-manage the medical, psychosocial, and practical consequences of their illness. However, the impact of self-management skills on patient outcomes and healthcare utilisation remains unclear. Therefore, we examined self-management skills among patients with advanced cancer and their associations with depressive symptoms, quality of life, and formal and informal healthcare utilisation. DESIGN AND SETTING: We embedded a cross-sectional questionnaire study in a Dutch nationwide prospective observational cohort study (eQuiPe study). PARTICIPANTS: 464 patients with advanced cancer (response rate 42.1%). 50% of the participants were women, and the mean age was 66 years (SD = 10). OUTCOME MEASURES: Self-management skills were assessed using three scales of the Health Education Impact Questionnaire: Skill and technique acquisition (STA), Self-monitoring and insight (SMI), and Health services navigation (HSN) (range: 1-4). Multivariate linear and logistic regression analyses were performed to examine associations (adjusting for sociodemographic and medical characteristics) between self-management skills and depressive symptoms (Hospital Anxiety and Depression Scale), quality of life (European Organisation for Research and Treatment of Cancer), and healthcare utilisation in the past month (healthcare organisations and disciplines; hospital admissions; emergency care visits; informal care). RESULTS: Mean (SD) scores were 3.0 (0.5) for STA, 3.2 (0.4) for SMI, and 3.4 (0.5) for HSN. Higher scores of self-management skills on all three scales were significantly associated with fewer depressive symptoms (STA: β = -2.36, 95% CI -2.98 to -1.69; SMI: β = -2.88, 95% CI -3.64 to -2.09; HSN: β = -2.06, 95% CI -2.76 to -1.37). Patients with higher levels of STA and SMI reported better quality of life (β = 8.54, 95% CI 5.84 to 11.01 and β = 8.41, 95% CI 4.75 to 11.99, respectively). Regarding healthcare utilisation, only HSN showed a significant association, with higher scores being associated with increased nurse contact (β = 1.65, 95% CI 1.09 to 2.56). CONCLUSIONS: Greater self-management skills were associated with fewer depressive symptoms and improved quality of life in patients with advanced cancer. However, self-management skills were hardly associated with healthcare utilisation. TRIAL REGISTRATION NUMBER: Netherlands Trial Register; NTR6584.
...
OBJECTIVES: Patients with advanced cancer are increasingly encouraged to self-manage the medical, psychosocial, and practical consequences of their illness. However, the impact of self-management skills on patient outcomes and healthcare utilisation remains unclear. Therefore, we examined self-management skills among patients with advanced cancer and their associations with depressive symptoms, quality of life, and formal and informal healthcare utilisation. DESIGN AND SETTING: We embedded a cross-sectional questionnaire study in a Dutch nationwide prospective observational cohort study (eQuiPe study). PARTICIPANTS: 464 patients with advanced cancer (response rate 42.1%). 50% of the participants were women, and the mean age was 66 years (SD = 10). OUTCOME MEASURES: Self-management skills were assessed using three scales of the Health Education Impact Questionnaire: Skill and technique acquisition (STA), Self-monitoring and insight (SMI), and Health services navigation (HSN) (range: 1-4). Multivariate linear and logistic regression analyses were performed to examine associations (adjusting for sociodemographic and medical characteristics) between self-management skills and depressive symptoms (Hospital Anxiety and Depression Scale), quality of life (European Organisation for Research and Treatment of Cancer), and healthcare utilisation in the past month (healthcare organisations and disciplines; hospital admissions; emergency care visits; informal care). RESULTS: Mean (SD) scores were 3.0 (0.5) for STA, 3.2 (0.4) for SMI, and 3.4 (0.5) for HSN. Higher scores of self-management skills on all three scales were significantly associated with fewer depressive symptoms (STA: β = -2.36, 95% CI -2.98 to -1.69; SMI: β = -2.88, 95% CI -3.64 to -2.09; HSN: β = -2.06, 95% CI -2.76 to -1.37). Patients with higher levels of STA and SMI reported better quality of life (β = 8.54, 95% CI 5.84 to 11.01 and β = 8.41, 95% CI 4.75 to 11.99, respectively). Regarding healthcare utilisation, only HSN showed a significant association, with higher scores being associated with increased nurse contact (β = 1.65, 95% CI 1.09 to 2.56). CONCLUSIONS: Greater self-management skills were associated with fewer depressive symptoms and improved quality of life in patients with advanced cancer. However, self-management skills were hardly associated with healthcare utilisation. TRIAL REGISTRATION NUMBER: Netherlands Trial Register; NTR6584.
Journal article
(2026)
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Elfi M. Verheul, Maria Margarete Karsten, Pimrapat Gebert, Lea Doppelbauer, Simona Borstnar, Sabine Siesling, Anne M. Stiggelbout, Judith Rietjens, Dirk Snelders, More Authors
BackgroundPredictions of Health-Related Quality of Life (HRQoL) outcomes could support realistic recovery expectations after breast cancer (BC) surgery. We aimed to develop and validate prediction models for HRQoL outcomes after BC surgery.MethodsWe used three datasets of BC patients from Berlin, Germany; Ljubljana, Slovenia; and Rotterdam; Netherlands. We included non-metastasised patients who were surgically treated for an initial diagnosis of BC and completed pre- and postoperative validated questionnaires. We used linear mixed models to analyse 15 domains of the EORTC QLQ-C30 and EORTC QLQ-BR23 over a two-year horizon. Baseline domain score (measured pre-operatively), age, BMI, smoking, TN stage, receptor status, neoadjuvant chemotherapy, axillary surgery and surgery type (breast-conserving, mastectomy, and immediate implant-based reconstruction) were included as predictors. Predictive performance at validation was assessed by the proportion of variance explained (marginal R2; mR2).ResultsWe included N = 795 patients from Germany for development and N = 623 from Slovenia and N = 417 from Netherlands for validation. The largest proportion of variance was explained by the prediction models for sexual functioning (SF, mR2 35%), physical functioning (PF, mR2 29%), body image (BI, mR2 26%), and cognitive functioning (CF, mR2 25%). The models captured meaningfully different trends over time for different outcomes and surgery types. The predictive performance of the models was largely driven by the baseline domain score. Performance was reasonable at external validation, with r2 values of 19–33% for PF, 10–17% for CF, 15–18% for BI, and 22–28% for SF, although some other outcomes (e.g. breast symptoms and role functioning) showed miscalibration, indicating a need for recalibration.ConclusionHRQoL after breast cancer surgery can be predicted using simple models with baseline domain scores and surgery type, demonstrating a new opportunity for Patient-Reported Outcome Measures (PROMs) in personalized care.
...
BackgroundPredictions of Health-Related Quality of Life (HRQoL) outcomes could support realistic recovery expectations after breast cancer (BC) surgery. We aimed to develop and validate prediction models for HRQoL outcomes after BC surgery.MethodsWe used three datasets of BC patients from Berlin, Germany; Ljubljana, Slovenia; and Rotterdam; Netherlands. We included non-metastasised patients who were surgically treated for an initial diagnosis of BC and completed pre- and postoperative validated questionnaires. We used linear mixed models to analyse 15 domains of the EORTC QLQ-C30 and EORTC QLQ-BR23 over a two-year horizon. Baseline domain score (measured pre-operatively), age, BMI, smoking, TN stage, receptor status, neoadjuvant chemotherapy, axillary surgery and surgery type (breast-conserving, mastectomy, and immediate implant-based reconstruction) were included as predictors. Predictive performance at validation was assessed by the proportion of variance explained (marginal R2; mR2).ResultsWe included N = 795 patients from Germany for development and N = 623 from Slovenia and N = 417 from Netherlands for validation. The largest proportion of variance was explained by the prediction models for sexual functioning (SF, mR2 35%), physical functioning (PF, mR2 29%), body image (BI, mR2 26%), and cognitive functioning (CF, mR2 25%). The models captured meaningfully different trends over time for different outcomes and surgery types. The predictive performance of the models was largely driven by the baseline domain score. Performance was reasonable at external validation, with r2 values of 19–33% for PF, 10–17% for CF, 15–18% for BI, and 22–28% for SF, although some other outcomes (e.g. breast symptoms and role functioning) showed miscalibration, indicating a need for recalibration.ConclusionHRQoL after breast cancer surgery can be predicted using simple models with baseline domain scores and surgery type, demonstrating a new opportunity for Patient-Reported Outcome Measures (PROMs) in personalized care.
Participating in decision-making at the end of life
The self-reported ability of people with cancer across 11 countries
Journal article
(2026)
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Yassin Engelberts, Judith A.C. Rietjens, Stephen Mason, Agnes van der Heide, Ida J. Korfage, Laura A. Hartman, Claudia Fischer, Melanie Joshi, Vilma A. Tripodoro, Pilar Barnestein-Fonseca, Dröfn Birgisdóttir, Dagny Faksvåg Haugen, Antoine Elyn
Objectives: Uncertainty among healthcare providers about patients’ ability to make care decisions is a barrier to shared decision-making. We aimed to assess the self-reported decision-making ability of patients with cancer at the end of life. Methods: Data from 11 countries of adults with a limited life expectancy and cancer as the primary diagnosis were used. Participants completed a questionnaire, including one item on decision-making ability and two on decision-making preferences. Correlations between self-reported ability and preferences were tested using Kendall's tau. Associations between decision-making ability and patient characteristics were determined using mixed-effects ordinal regression models. Results: The sample (n = 1076, 53 % identified as men) had a mean age of 69 years (SD: 11.5). Among them, 80 % reported being able to make decisions about their life and care most of the time, 14 % some of the time, 5 % only a little of the time, and 2 % never. Regarding preferences, 95 % preferred to be involved in decision-making and 44 % preferred the doctors to make the decisions. These preferences were weakly correlated with decision-making ability (Kendall's tau: 0.13 and −0.11, respectively). Feeling able to make decisions was less likely for those institutionalized (versus living with relatives, OR: 0.26, 95 % CI: 0.12;0.55), those with tertiary education (versus primary/no education, OR: 0.43, 95 % CI: 0.22;0.85) and those without clear understanding of their health (versus those with understanding, OR: 0.29, 95 % CI: 0.16;0.52). Conclusions: Although most patients felt able to make decisions about their care, two out of every ten did not. About five out of ten preferred their doctors to make decisions. Practice implications: As almost all patients want to be involved in decisions, we suggest that providers discuss with patients how decisions will be made. This may enable providers to identify patients’ needs and adapt the decision-making process to their abilities and preferences.
...
Objectives: Uncertainty among healthcare providers about patients’ ability to make care decisions is a barrier to shared decision-making. We aimed to assess the self-reported decision-making ability of patients with cancer at the end of life. Methods: Data from 11 countries of adults with a limited life expectancy and cancer as the primary diagnosis were used. Participants completed a questionnaire, including one item on decision-making ability and two on decision-making preferences. Correlations between self-reported ability and preferences were tested using Kendall's tau. Associations between decision-making ability and patient characteristics were determined using mixed-effects ordinal regression models. Results: The sample (n = 1076, 53 % identified as men) had a mean age of 69 years (SD: 11.5). Among them, 80 % reported being able to make decisions about their life and care most of the time, 14 % some of the time, 5 % only a little of the time, and 2 % never. Regarding preferences, 95 % preferred to be involved in decision-making and 44 % preferred the doctors to make the decisions. These preferences were weakly correlated with decision-making ability (Kendall's tau: 0.13 and −0.11, respectively). Feeling able to make decisions was less likely for those institutionalized (versus living with relatives, OR: 0.26, 95 % CI: 0.12;0.55), those with tertiary education (versus primary/no education, OR: 0.43, 95 % CI: 0.22;0.85) and those without clear understanding of their health (versus those with understanding, OR: 0.29, 95 % CI: 0.16;0.52). Conclusions: Although most patients felt able to make decisions about their care, two out of every ten did not. About five out of ten preferred their doctors to make decisions. Practice implications: As almost all patients want to be involved in decisions, we suggest that providers discuss with patients how decisions will be made. This may enable providers to identify patients’ needs and adapt the decision-making process to their abilities and preferences.
Information provision in life-threatening illnesses
Comprehensive framework
Journal article
(2025)
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Liesbeth M. Van Vliet, Jonathan Koffman, Eve Namisango, Diah Martina, Daniela Gidaly, Martin Loucka, Anthony L. Back, Lucy E. Selman, Judith A.C. Rietjens, More authors...
Background
In life-threatening illnesses, open information provision can benefit patients and families. However, not all patients prefer to have all information. There is a lack of clinical guidance on how to handle patient preferences for non-disclosure.
Aim
To develop a conceptual framework and practical guidance for clinicians regarding the spectrum of patients’ information provision preferences with a focus on when patients do not desire to have full information.
Methods
Multidisciplinary expert stakeholder meeting.
Results
20 expert stakeholders from various disciplines and continents participated in the expert meeting. Based on the qualitative results, a conceptual framework was created. Our framework highlights that information is never value-free but attains value via healthcare provider and patient/family factors, including how information is interpreted by clinicians and patients/families. In this process, ethical and sociocultural tensions can arise, such as between patient and family autonomy, that can influence harmful effects of the attained value of information along several axes such as empowerment versus disempowerment. To mitigate tensions and minimise harm, our framework produces practical guidance for clinicians such as making a connection and having an open attitude.
Conclusions
Our framework has clinical, research and policy implications and can be further refined and tested. Ultimately, it serves as a starting point to reduce social and cultural inequities in end-of-life care information in a global context. ...
In life-threatening illnesses, open information provision can benefit patients and families. However, not all patients prefer to have all information. There is a lack of clinical guidance on how to handle patient preferences for non-disclosure.
Aim
To develop a conceptual framework and practical guidance for clinicians regarding the spectrum of patients’ information provision preferences with a focus on when patients do not desire to have full information.
Methods
Multidisciplinary expert stakeholder meeting.
Results
20 expert stakeholders from various disciplines and continents participated in the expert meeting. Based on the qualitative results, a conceptual framework was created. Our framework highlights that information is never value-free but attains value via healthcare provider and patient/family factors, including how information is interpreted by clinicians and patients/families. In this process, ethical and sociocultural tensions can arise, such as between patient and family autonomy, that can influence harmful effects of the attained value of information along several axes such as empowerment versus disempowerment. To mitigate tensions and minimise harm, our framework produces practical guidance for clinicians such as making a connection and having an open attitude.
Conclusions
Our framework has clinical, research and policy implications and can be further refined and tested. Ultimately, it serves as a starting point to reduce social and cultural inequities in end-of-life care information in a global context. ...
Background
In life-threatening illnesses, open information provision can benefit patients and families. However, not all patients prefer to have all information. There is a lack of clinical guidance on how to handle patient preferences for non-disclosure.
Aim
To develop a conceptual framework and practical guidance for clinicians regarding the spectrum of patients’ information provision preferences with a focus on when patients do not desire to have full information.
Methods
Multidisciplinary expert stakeholder meeting.
Results
20 expert stakeholders from various disciplines and continents participated in the expert meeting. Based on the qualitative results, a conceptual framework was created. Our framework highlights that information is never value-free but attains value via healthcare provider and patient/family factors, including how information is interpreted by clinicians and patients/families. In this process, ethical and sociocultural tensions can arise, such as between patient and family autonomy, that can influence harmful effects of the attained value of information along several axes such as empowerment versus disempowerment. To mitigate tensions and minimise harm, our framework produces practical guidance for clinicians such as making a connection and having an open attitude.
Conclusions
Our framework has clinical, research and policy implications and can be further refined and tested. Ultimately, it serves as a starting point to reduce social and cultural inequities in end-of-life care information in a global context.
In life-threatening illnesses, open information provision can benefit patients and families. However, not all patients prefer to have all information. There is a lack of clinical guidance on how to handle patient preferences for non-disclosure.
Aim
To develop a conceptual framework and practical guidance for clinicians regarding the spectrum of patients’ information provision preferences with a focus on when patients do not desire to have full information.
Methods
Multidisciplinary expert stakeholder meeting.
Results
20 expert stakeholders from various disciplines and continents participated in the expert meeting. Based on the qualitative results, a conceptual framework was created. Our framework highlights that information is never value-free but attains value via healthcare provider and patient/family factors, including how information is interpreted by clinicians and patients/families. In this process, ethical and sociocultural tensions can arise, such as between patient and family autonomy, that can influence harmful effects of the attained value of information along several axes such as empowerment versus disempowerment. To mitigate tensions and minimise harm, our framework produces practical guidance for clinicians such as making a connection and having an open attitude.
Conclusions
Our framework has clinical, research and policy implications and can be further refined and tested. Ultimately, it serves as a starting point to reduce social and cultural inequities in end-of-life care information in a global context.
Review
(2025)
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Ellen X.Y. Hu, Evelien S. van Hoorn, Isabel R.A. Retel Helmrich, Susanne Muehlschlegel, Judith A.C. Rietjens, Hester F. Lingsma
Background
Prognostic models are crucial for predicting patient outcomes and aiding clinical decision making. Despite their availability in acute neurologic care, their use in clinical practice is limited, with insufficient reflection on reasons for this scarce implementation.
Purpose
To summarize facilitators and barriers among clinicians affecting the use of prognostic models in acute neurologic care.
Data Sources
Systematic searches were conducted in Embase, Medline ALL, Web of Science Core Collection, and Cochrane Central Register of Controlled Trials from inception until February 2024.
Study Selection
Eligible studies included those providing clinicians’ perspectives on the use of prognostic models in acute neurologic care.
Data Extraction
Data were extracted concerning study characteristics, study aim, data collection and analysis, prognostic models, participant characteristics, facilitators, and barriers. Risk of bias was assessed using the Qualsyst tool.
Data Synthesis
Findings were structured around the Unified Theory of Acceptance and Use of Technology framework. Identified facilitators included improved communication with patients and surrogate decision makers (n = 9), reassurance of clinical judgment (n = 6) perceived improved patient outcomes (n = 4), standardization of care (n = 4), resource optimization (n = 3), and extension of clinical knowledge (n = 3). Barriers included perceived misinterpretation during risk communication (n = 3), mistrust in data (n = 3), perceived reduction of clinicians’ autonomy (n = 3), and ethical considerations (n = 2). In total, 15 studies were included, with all but 1 demonstrating good methodological quality. None were excluded due to poor quality ratings.
Limitations
This review identifies limitations, including study heterogeneity, exclusion of gray literature, and the scarcity of evaluations on model implementation.
Conclusions
Understanding facilitators and barriers may enhance prognostic model development and implementation. Bridging the gap between development and clinical use requires improved collaboration among researchers, clinicians, patients, and surrogate decision makers.
Highlights
- This is the first systematic review to summarize published facilitators and barriers affecting the use of prognostic models in acute neurologic care from the clinicians’ perspective.
- Commonly reported barriers and facilitators were consistent with several domains of the Unified Theory of Acceptance and Use of Technology model, including effort expectancy, social influence, and facilitating conditions, with the focus on the performance expectancy domain.
- Future implementation research including collaboration with researchers from different fields, clinicians, patients, and their surrogate decision makers may be highly valuable for future model development and implementation. ...
Prognostic models are crucial for predicting patient outcomes and aiding clinical decision making. Despite their availability in acute neurologic care, their use in clinical practice is limited, with insufficient reflection on reasons for this scarce implementation.
Purpose
To summarize facilitators and barriers among clinicians affecting the use of prognostic models in acute neurologic care.
Data Sources
Systematic searches were conducted in Embase, Medline ALL, Web of Science Core Collection, and Cochrane Central Register of Controlled Trials from inception until February 2024.
Study Selection
Eligible studies included those providing clinicians’ perspectives on the use of prognostic models in acute neurologic care.
Data Extraction
Data were extracted concerning study characteristics, study aim, data collection and analysis, prognostic models, participant characteristics, facilitators, and barriers. Risk of bias was assessed using the Qualsyst tool.
Data Synthesis
Findings were structured around the Unified Theory of Acceptance and Use of Technology framework. Identified facilitators included improved communication with patients and surrogate decision makers (n = 9), reassurance of clinical judgment (n = 6) perceived improved patient outcomes (n = 4), standardization of care (n = 4), resource optimization (n = 3), and extension of clinical knowledge (n = 3). Barriers included perceived misinterpretation during risk communication (n = 3), mistrust in data (n = 3), perceived reduction of clinicians’ autonomy (n = 3), and ethical considerations (n = 2). In total, 15 studies were included, with all but 1 demonstrating good methodological quality. None were excluded due to poor quality ratings.
Limitations
This review identifies limitations, including study heterogeneity, exclusion of gray literature, and the scarcity of evaluations on model implementation.
Conclusions
Understanding facilitators and barriers may enhance prognostic model development and implementation. Bridging the gap between development and clinical use requires improved collaboration among researchers, clinicians, patients, and surrogate decision makers.
Highlights
- This is the first systematic review to summarize published facilitators and barriers affecting the use of prognostic models in acute neurologic care from the clinicians’ perspective.
- Commonly reported barriers and facilitators were consistent with several domains of the Unified Theory of Acceptance and Use of Technology model, including effort expectancy, social influence, and facilitating conditions, with the focus on the performance expectancy domain.
- Future implementation research including collaboration with researchers from different fields, clinicians, patients, and their surrogate decision makers may be highly valuable for future model development and implementation. ...
Background
Prognostic models are crucial for predicting patient outcomes and aiding clinical decision making. Despite their availability in acute neurologic care, their use in clinical practice is limited, with insufficient reflection on reasons for this scarce implementation.
Purpose
To summarize facilitators and barriers among clinicians affecting the use of prognostic models in acute neurologic care.
Data Sources
Systematic searches were conducted in Embase, Medline ALL, Web of Science Core Collection, and Cochrane Central Register of Controlled Trials from inception until February 2024.
Study Selection
Eligible studies included those providing clinicians’ perspectives on the use of prognostic models in acute neurologic care.
Data Extraction
Data were extracted concerning study characteristics, study aim, data collection and analysis, prognostic models, participant characteristics, facilitators, and barriers. Risk of bias was assessed using the Qualsyst tool.
Data Synthesis
Findings were structured around the Unified Theory of Acceptance and Use of Technology framework. Identified facilitators included improved communication with patients and surrogate decision makers (n = 9), reassurance of clinical judgment (n = 6) perceived improved patient outcomes (n = 4), standardization of care (n = 4), resource optimization (n = 3), and extension of clinical knowledge (n = 3). Barriers included perceived misinterpretation during risk communication (n = 3), mistrust in data (n = 3), perceived reduction of clinicians’ autonomy (n = 3), and ethical considerations (n = 2). In total, 15 studies were included, with all but 1 demonstrating good methodological quality. None were excluded due to poor quality ratings.
Limitations
This review identifies limitations, including study heterogeneity, exclusion of gray literature, and the scarcity of evaluations on model implementation.
Conclusions
Understanding facilitators and barriers may enhance prognostic model development and implementation. Bridging the gap between development and clinical use requires improved collaboration among researchers, clinicians, patients, and surrogate decision makers.
Highlights
- This is the first systematic review to summarize published facilitators and barriers affecting the use of prognostic models in acute neurologic care from the clinicians’ perspective.
- Commonly reported barriers and facilitators were consistent with several domains of the Unified Theory of Acceptance and Use of Technology model, including effort expectancy, social influence, and facilitating conditions, with the focus on the performance expectancy domain.
- Future implementation research including collaboration with researchers from different fields, clinicians, patients, and their surrogate decision makers may be highly valuable for future model development and implementation.
Prognostic models are crucial for predicting patient outcomes and aiding clinical decision making. Despite their availability in acute neurologic care, their use in clinical practice is limited, with insufficient reflection on reasons for this scarce implementation.
Purpose
To summarize facilitators and barriers among clinicians affecting the use of prognostic models in acute neurologic care.
Data Sources
Systematic searches were conducted in Embase, Medline ALL, Web of Science Core Collection, and Cochrane Central Register of Controlled Trials from inception until February 2024.
Study Selection
Eligible studies included those providing clinicians’ perspectives on the use of prognostic models in acute neurologic care.
Data Extraction
Data were extracted concerning study characteristics, study aim, data collection and analysis, prognostic models, participant characteristics, facilitators, and barriers. Risk of bias was assessed using the Qualsyst tool.
Data Synthesis
Findings were structured around the Unified Theory of Acceptance and Use of Technology framework. Identified facilitators included improved communication with patients and surrogate decision makers (n = 9), reassurance of clinical judgment (n = 6) perceived improved patient outcomes (n = 4), standardization of care (n = 4), resource optimization (n = 3), and extension of clinical knowledge (n = 3). Barriers included perceived misinterpretation during risk communication (n = 3), mistrust in data (n = 3), perceived reduction of clinicians’ autonomy (n = 3), and ethical considerations (n = 2). In total, 15 studies were included, with all but 1 demonstrating good methodological quality. None were excluded due to poor quality ratings.
Limitations
This review identifies limitations, including study heterogeneity, exclusion of gray literature, and the scarcity of evaluations on model implementation.
Conclusions
Understanding facilitators and barriers may enhance prognostic model development and implementation. Bridging the gap between development and clinical use requires improved collaboration among researchers, clinicians, patients, and surrogate decision makers.
Highlights
- This is the first systematic review to summarize published facilitators and barriers affecting the use of prognostic models in acute neurologic care from the clinicians’ perspective.
- Commonly reported barriers and facilitators were consistent with several domains of the Unified Theory of Acceptance and Use of Technology model, including effort expectancy, social influence, and facilitating conditions, with the focus on the performance expectancy domain.
- Future implementation research including collaboration with researchers from different fields, clinicians, patients, and their surrogate decision makers may be highly valuable for future model development and implementation.
Journal article
(2025)
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N. C.W. Kamminga, J. E.C. Kievits, M. Wakkee, S. G.W. van Loon, M. C.W. Joosen, D. Verver, K. Munte, J. A.C. Rietjens, M. Lugtenberg, More Authors...
In this article Reference 10 was incorrect as ‘van der Zwanenburg LC, Koldenhof JJ, Suijkerbuijk KPM, Schellekens MPJ (2024) What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study. Support Care Cancer 32(4):222’ and should have been ‘Zwanenburg LC, van der Lee ML, Koldenhof JJ, Suijkerbuijk KPM, Schellekens MPJ (2024) What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study. Support Care Cancer. 32(4):222. PMID: 38470541.’
...
In this article Reference 10 was incorrect as ‘van der Zwanenburg LC, Koldenhof JJ, Suijkerbuijk KPM, Schellekens MPJ (2024) What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study. Support Care Cancer 32(4):222’ and should have been ‘Zwanenburg LC, van der Lee ML, Koldenhof JJ, Suijkerbuijk KPM, Schellekens MPJ (2024) What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study. Support Care Cancer. 32(4):222. PMID: 38470541.’
Review
(2025)
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Yeray Sañudo, Canan Akoglu, J.A.C. Rietjens, H.M.J.J. Snelders, Anne M. Stiggelbout, Jorge Sierra-Pérez
Objectives
This systematic review examines how design methodologies support Shared Decision Making (SDM), identifies the most suitable for future use, explores types of methodologies used, challenges faced, and the impact on patients, clinicians, and care pathways.
Methods
Studies were searched on Medline, Web of Science, Scopus and grey literature (Google Scholar, CORDIS) up to July 2024, following PRISMA guidelines.
Results
were analysed to identify patient involvement, design strategies, SDM solutions, and their impact on care paths, professionals, and patients.
Results
Out of 2499 studies and 39 grey literature projects identified, 22 studies (reported in 35 publications) were selected, primarily from the USA and Europe (2015 onward). User-Centered Design predominated, involving health professionals more than patients. IPDAS standards were common. Evaluations showed improved patient experience and SDM role, with a potential increase in healthcare professionals' workload.
Conclusion
Although design methodologies are used in SDM implementation, improvement is needed. Service Design can enhance implementation by analysing the entire SDM process, while co-creative approaches develop patient-focused solutions that integrate smoothly into health professionals' workflows.
Practical implications
Introducing SDM in healthcare is complex, but design methodologies can help by analysing stakeholder needs, providing a broader care path view, and facilitating SDM implementation. ...
This systematic review examines how design methodologies support Shared Decision Making (SDM), identifies the most suitable for future use, explores types of methodologies used, challenges faced, and the impact on patients, clinicians, and care pathways.
Methods
Studies were searched on Medline, Web of Science, Scopus and grey literature (Google Scholar, CORDIS) up to July 2024, following PRISMA guidelines.
Results
were analysed to identify patient involvement, design strategies, SDM solutions, and their impact on care paths, professionals, and patients.
Results
Out of 2499 studies and 39 grey literature projects identified, 22 studies (reported in 35 publications) were selected, primarily from the USA and Europe (2015 onward). User-Centered Design predominated, involving health professionals more than patients. IPDAS standards were common. Evaluations showed improved patient experience and SDM role, with a potential increase in healthcare professionals' workload.
Conclusion
Although design methodologies are used in SDM implementation, improvement is needed. Service Design can enhance implementation by analysing the entire SDM process, while co-creative approaches develop patient-focused solutions that integrate smoothly into health professionals' workflows.
Practical implications
Introducing SDM in healthcare is complex, but design methodologies can help by analysing stakeholder needs, providing a broader care path view, and facilitating SDM implementation. ...
Objectives
This systematic review examines how design methodologies support Shared Decision Making (SDM), identifies the most suitable for future use, explores types of methodologies used, challenges faced, and the impact on patients, clinicians, and care pathways.
Methods
Studies were searched on Medline, Web of Science, Scopus and grey literature (Google Scholar, CORDIS) up to July 2024, following PRISMA guidelines.
Results
were analysed to identify patient involvement, design strategies, SDM solutions, and their impact on care paths, professionals, and patients.
Results
Out of 2499 studies and 39 grey literature projects identified, 22 studies (reported in 35 publications) were selected, primarily from the USA and Europe (2015 onward). User-Centered Design predominated, involving health professionals more than patients. IPDAS standards were common. Evaluations showed improved patient experience and SDM role, with a potential increase in healthcare professionals' workload.
Conclusion
Although design methodologies are used in SDM implementation, improvement is needed. Service Design can enhance implementation by analysing the entire SDM process, while co-creative approaches develop patient-focused solutions that integrate smoothly into health professionals' workflows.
Practical implications
Introducing SDM in healthcare is complex, but design methodologies can help by analysing stakeholder needs, providing a broader care path view, and facilitating SDM implementation.
This systematic review examines how design methodologies support Shared Decision Making (SDM), identifies the most suitable for future use, explores types of methodologies used, challenges faced, and the impact on patients, clinicians, and care pathways.
Methods
Studies were searched on Medline, Web of Science, Scopus and grey literature (Google Scholar, CORDIS) up to July 2024, following PRISMA guidelines.
Results
were analysed to identify patient involvement, design strategies, SDM solutions, and their impact on care paths, professionals, and patients.
Results
Out of 2499 studies and 39 grey literature projects identified, 22 studies (reported in 35 publications) were selected, primarily from the USA and Europe (2015 onward). User-Centered Design predominated, involving health professionals more than patients. IPDAS standards were common. Evaluations showed improved patient experience and SDM role, with a potential increase in healthcare professionals' workload.
Conclusion
Although design methodologies are used in SDM implementation, improvement is needed. Service Design can enhance implementation by analysing the entire SDM process, while co-creative approaches develop patient-focused solutions that integrate smoothly into health professionals' workflows.
Practical implications
Introducing SDM in healthcare is complex, but design methodologies can help by analysing stakeholder needs, providing a broader care path view, and facilitating SDM implementation.
Journal article
(2025)
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T. F. Stoop, L. W. F. Seelen, F. R. van ’t Land, A. C. van der Hout, J. C. M. Scheepens, M. Ali, A. M. Stiggelbout, J.A.C. Rietjens, M. G. Besselink, More authors...
Background
The introduction of (m)FOLFIRINOX and gemcitabine-nab-paclitaxel has changed the perspective for patients with locally advanced pancreatic cancer (LAPC). Consequently, in experienced centres 23% of patients with LAPC undergo a resection with 5-year overall survival (OS) rates of up to 25%. In the Netherlands, the nationwide resection rate for LAPC remains low at 8%. The PREOPANC-4 program aims for a nationwide implementation of the international multidisciplinary best-practice to improve patient outcome.
Methods
Nationwide program implementing the international multidisciplinary best-practice for LAPC. In the training phase, multidisciplinary and surgical webinars are given by 4 international experts, leading to a clinical protocol, followed by surgical off-site and on-site proctoring sessions. In the implementation phase, the clinical protocol will be implemented in all centres, including a nationwide expert panel (2022–2024). Healthcare professionals will be trained in shared decision-making. Consecutive patients diagnosed with pathology-proven LAPC (i.e., arterial involvement > 90° and/or portomesenteric venous > 270° involvement or occlusion [DPCG criteria]) are eligible. Primary outcomes are median and 5-year OS from diagnosis, resection rate, in-hospital/30-day mortality and major morbidity (i.e., Clavien-Dindo grade ≥ IIIa), and radical resection (R0) rate. Secondary outcomes include quality of life, functioning, side effects, and patients’ healthcare satisfaction in all included patients. Outcomes will be compared with patients with borderline resectable pancreatic cancer (BRPC) treated with neoadjuvant FOLFIRINOX in the PREOPANC-2 trial (EudraCT: 2017–002036-17) and a historical cohort of patients with LAPC from the PACAP registry (NCT03513705). The existing prospective LAPC Registry and PACAP PROMs (NCT03513705) will be used for data collection. In qualitative interviews, treatment preferences, values, and experiences of LAPC patients, their relatives, and healthcare professionals will be assessed for the development of shared decision-making supportive tools. It is hypothesized that the program will double the nationwide LAPC resection rate to 16% with major morbidity < 50% and mortality ≤ 5%, and OS following resection similar to that observed in patients with BRPC.
Discussion
The PREOPANC-4 program aims to safely implement the international multidisciplinary best-practice for LAPC leading to benchmark outcomes for both short-term morbidity, mortality, and OS.
Trial registration
PREOPANC-4 program was registered at ClinicalTrials.gov (NCT05524090) on September 1, 2022. ...
The introduction of (m)FOLFIRINOX and gemcitabine-nab-paclitaxel has changed the perspective for patients with locally advanced pancreatic cancer (LAPC). Consequently, in experienced centres 23% of patients with LAPC undergo a resection with 5-year overall survival (OS) rates of up to 25%. In the Netherlands, the nationwide resection rate for LAPC remains low at 8%. The PREOPANC-4 program aims for a nationwide implementation of the international multidisciplinary best-practice to improve patient outcome.
Methods
Nationwide program implementing the international multidisciplinary best-practice for LAPC. In the training phase, multidisciplinary and surgical webinars are given by 4 international experts, leading to a clinical protocol, followed by surgical off-site and on-site proctoring sessions. In the implementation phase, the clinical protocol will be implemented in all centres, including a nationwide expert panel (2022–2024). Healthcare professionals will be trained in shared decision-making. Consecutive patients diagnosed with pathology-proven LAPC (i.e., arterial involvement > 90° and/or portomesenteric venous > 270° involvement or occlusion [DPCG criteria]) are eligible. Primary outcomes are median and 5-year OS from diagnosis, resection rate, in-hospital/30-day mortality and major morbidity (i.e., Clavien-Dindo grade ≥ IIIa), and radical resection (R0) rate. Secondary outcomes include quality of life, functioning, side effects, and patients’ healthcare satisfaction in all included patients. Outcomes will be compared with patients with borderline resectable pancreatic cancer (BRPC) treated with neoadjuvant FOLFIRINOX in the PREOPANC-2 trial (EudraCT: 2017–002036-17) and a historical cohort of patients with LAPC from the PACAP registry (NCT03513705). The existing prospective LAPC Registry and PACAP PROMs (NCT03513705) will be used for data collection. In qualitative interviews, treatment preferences, values, and experiences of LAPC patients, their relatives, and healthcare professionals will be assessed for the development of shared decision-making supportive tools. It is hypothesized that the program will double the nationwide LAPC resection rate to 16% with major morbidity < 50% and mortality ≤ 5%, and OS following resection similar to that observed in patients with BRPC.
Discussion
The PREOPANC-4 program aims to safely implement the international multidisciplinary best-practice for LAPC leading to benchmark outcomes for both short-term morbidity, mortality, and OS.
Trial registration
PREOPANC-4 program was registered at ClinicalTrials.gov (NCT05524090) on September 1, 2022. ...
Background
The introduction of (m)FOLFIRINOX and gemcitabine-nab-paclitaxel has changed the perspective for patients with locally advanced pancreatic cancer (LAPC). Consequently, in experienced centres 23% of patients with LAPC undergo a resection with 5-year overall survival (OS) rates of up to 25%. In the Netherlands, the nationwide resection rate for LAPC remains low at 8%. The PREOPANC-4 program aims for a nationwide implementation of the international multidisciplinary best-practice to improve patient outcome.
Methods
Nationwide program implementing the international multidisciplinary best-practice for LAPC. In the training phase, multidisciplinary and surgical webinars are given by 4 international experts, leading to a clinical protocol, followed by surgical off-site and on-site proctoring sessions. In the implementation phase, the clinical protocol will be implemented in all centres, including a nationwide expert panel (2022–2024). Healthcare professionals will be trained in shared decision-making. Consecutive patients diagnosed with pathology-proven LAPC (i.e., arterial involvement > 90° and/or portomesenteric venous > 270° involvement or occlusion [DPCG criteria]) are eligible. Primary outcomes are median and 5-year OS from diagnosis, resection rate, in-hospital/30-day mortality and major morbidity (i.e., Clavien-Dindo grade ≥ IIIa), and radical resection (R0) rate. Secondary outcomes include quality of life, functioning, side effects, and patients’ healthcare satisfaction in all included patients. Outcomes will be compared with patients with borderline resectable pancreatic cancer (BRPC) treated with neoadjuvant FOLFIRINOX in the PREOPANC-2 trial (EudraCT: 2017–002036-17) and a historical cohort of patients with LAPC from the PACAP registry (NCT03513705). The existing prospective LAPC Registry and PACAP PROMs (NCT03513705) will be used for data collection. In qualitative interviews, treatment preferences, values, and experiences of LAPC patients, their relatives, and healthcare professionals will be assessed for the development of shared decision-making supportive tools. It is hypothesized that the program will double the nationwide LAPC resection rate to 16% with major morbidity < 50% and mortality ≤ 5%, and OS following resection similar to that observed in patients with BRPC.
Discussion
The PREOPANC-4 program aims to safely implement the international multidisciplinary best-practice for LAPC leading to benchmark outcomes for both short-term morbidity, mortality, and OS.
Trial registration
PREOPANC-4 program was registered at ClinicalTrials.gov (NCT05524090) on September 1, 2022.
The introduction of (m)FOLFIRINOX and gemcitabine-nab-paclitaxel has changed the perspective for patients with locally advanced pancreatic cancer (LAPC). Consequently, in experienced centres 23% of patients with LAPC undergo a resection with 5-year overall survival (OS) rates of up to 25%. In the Netherlands, the nationwide resection rate for LAPC remains low at 8%. The PREOPANC-4 program aims for a nationwide implementation of the international multidisciplinary best-practice to improve patient outcome.
Methods
Nationwide program implementing the international multidisciplinary best-practice for LAPC. In the training phase, multidisciplinary and surgical webinars are given by 4 international experts, leading to a clinical protocol, followed by surgical off-site and on-site proctoring sessions. In the implementation phase, the clinical protocol will be implemented in all centres, including a nationwide expert panel (2022–2024). Healthcare professionals will be trained in shared decision-making. Consecutive patients diagnosed with pathology-proven LAPC (i.e., arterial involvement > 90° and/or portomesenteric venous > 270° involvement or occlusion [DPCG criteria]) are eligible. Primary outcomes are median and 5-year OS from diagnosis, resection rate, in-hospital/30-day mortality and major morbidity (i.e., Clavien-Dindo grade ≥ IIIa), and radical resection (R0) rate. Secondary outcomes include quality of life, functioning, side effects, and patients’ healthcare satisfaction in all included patients. Outcomes will be compared with patients with borderline resectable pancreatic cancer (BRPC) treated with neoadjuvant FOLFIRINOX in the PREOPANC-2 trial (EudraCT: 2017–002036-17) and a historical cohort of patients with LAPC from the PACAP registry (NCT03513705). The existing prospective LAPC Registry and PACAP PROMs (NCT03513705) will be used for data collection. In qualitative interviews, treatment preferences, values, and experiences of LAPC patients, their relatives, and healthcare professionals will be assessed for the development of shared decision-making supportive tools. It is hypothesized that the program will double the nationwide LAPC resection rate to 16% with major morbidity < 50% and mortality ≤ 5%, and OS following resection similar to that observed in patients with BRPC.
Discussion
The PREOPANC-4 program aims to safely implement the international multidisciplinary best-practice for LAPC leading to benchmark outcomes for both short-term morbidity, mortality, and OS.
Trial registration
PREOPANC-4 program was registered at ClinicalTrials.gov (NCT05524090) on September 1, 2022.
Journal article
(2025)
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Doris van der Smissen, Maud A. Schreijer, Lisette J.E.W.C. van Gemert-Pijnen, Rudolf M. Verdaasdonk, Agnes van der Heide, Ida J. Korfage, Judith A.C. Rietjens
Background:
The implementation of eHealth applications often fails. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework aims to identify complexities in eHealth applications; the more complex, the more risk of implementation failure.
Objective:
This study aimed to analyze the implementation of the web-based advance care planning (ACP) program “Explore Your Preferences for Treatment and Care” using the NASSS framework.
Methods:
The NASSS framework enables a systematic approach to improve the implementation of eHealth tools. It is aimed at generating a rich and situated analysis of complexities in multiple domains, based on thematic analysis of existing and newly collected data. It also aims at supporting individuals and organizations to handle these complexities. We used 6 of 7 domains of the NASSS framework (ie, condition, technology, value proposition, adopters, external context, and embedding and adaptation over time) leaving out “organization,” and analyzed the multimodal dataset of a web-based ACP program, its development and evaluation, including peer-reviewed publications, notes of stakeholder group meetings, and interviews with stakeholders.
Results:
This study showed that the web-based ACP program uses straightforward technology, is embedded in a well-established web-based health platform, and in general appears to generate a positive value for stakeholders. A complexity is the rather broad target population of the program. A potential complexity considers the limited insight into the extent to which health care professionals adopt the program. Awareness of the relevance of the web-based ACP program may still be improved among target populations of ACP and among health care professionals. Furthermore, the program may especially appeal to those who value individual autonomy, self-management, and an explicit and direct communicative approach.
Conclusions:
Relatively few complexities were identified considering the implementation of the web-based ACP program “Explore Your Preferences for Treatment and Care.” The program is evidence-based, freestanding, and well-maintained, with straightforward, well-understood technology. The program is expected to generate a positive value for different stakeholders. Complexities include the broad target population of the program and sociocultural factors. People with limited digital literacy may need support to use the program. Its uptake might be improved by increasing awareness of ACP and the program among a wider population of potential users and among health care professionals. Addressing these issues may guide future use and sustainability of the program. ...
The implementation of eHealth applications often fails. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework aims to identify complexities in eHealth applications; the more complex, the more risk of implementation failure.
Objective:
This study aimed to analyze the implementation of the web-based advance care planning (ACP) program “Explore Your Preferences for Treatment and Care” using the NASSS framework.
Methods:
The NASSS framework enables a systematic approach to improve the implementation of eHealth tools. It is aimed at generating a rich and situated analysis of complexities in multiple domains, based on thematic analysis of existing and newly collected data. It also aims at supporting individuals and organizations to handle these complexities. We used 6 of 7 domains of the NASSS framework (ie, condition, technology, value proposition, adopters, external context, and embedding and adaptation over time) leaving out “organization,” and analyzed the multimodal dataset of a web-based ACP program, its development and evaluation, including peer-reviewed publications, notes of stakeholder group meetings, and interviews with stakeholders.
Results:
This study showed that the web-based ACP program uses straightforward technology, is embedded in a well-established web-based health platform, and in general appears to generate a positive value for stakeholders. A complexity is the rather broad target population of the program. A potential complexity considers the limited insight into the extent to which health care professionals adopt the program. Awareness of the relevance of the web-based ACP program may still be improved among target populations of ACP and among health care professionals. Furthermore, the program may especially appeal to those who value individual autonomy, self-management, and an explicit and direct communicative approach.
Conclusions:
Relatively few complexities were identified considering the implementation of the web-based ACP program “Explore Your Preferences for Treatment and Care.” The program is evidence-based, freestanding, and well-maintained, with straightforward, well-understood technology. The program is expected to generate a positive value for different stakeholders. Complexities include the broad target population of the program and sociocultural factors. People with limited digital literacy may need support to use the program. Its uptake might be improved by increasing awareness of ACP and the program among a wider population of potential users and among health care professionals. Addressing these issues may guide future use and sustainability of the program. ...
Background:
The implementation of eHealth applications often fails. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework aims to identify complexities in eHealth applications; the more complex, the more risk of implementation failure.
Objective:
This study aimed to analyze the implementation of the web-based advance care planning (ACP) program “Explore Your Preferences for Treatment and Care” using the NASSS framework.
Methods:
The NASSS framework enables a systematic approach to improve the implementation of eHealth tools. It is aimed at generating a rich and situated analysis of complexities in multiple domains, based on thematic analysis of existing and newly collected data. It also aims at supporting individuals and organizations to handle these complexities. We used 6 of 7 domains of the NASSS framework (ie, condition, technology, value proposition, adopters, external context, and embedding and adaptation over time) leaving out “organization,” and analyzed the multimodal dataset of a web-based ACP program, its development and evaluation, including peer-reviewed publications, notes of stakeholder group meetings, and interviews with stakeholders.
Results:
This study showed that the web-based ACP program uses straightforward technology, is embedded in a well-established web-based health platform, and in general appears to generate a positive value for stakeholders. A complexity is the rather broad target population of the program. A potential complexity considers the limited insight into the extent to which health care professionals adopt the program. Awareness of the relevance of the web-based ACP program may still be improved among target populations of ACP and among health care professionals. Furthermore, the program may especially appeal to those who value individual autonomy, self-management, and an explicit and direct communicative approach.
Conclusions:
Relatively few complexities were identified considering the implementation of the web-based ACP program “Explore Your Preferences for Treatment and Care.” The program is evidence-based, freestanding, and well-maintained, with straightforward, well-understood technology. The program is expected to generate a positive value for different stakeholders. Complexities include the broad target population of the program and sociocultural factors. People with limited digital literacy may need support to use the program. Its uptake might be improved by increasing awareness of ACP and the program among a wider population of potential users and among health care professionals. Addressing these issues may guide future use and sustainability of the program.
The implementation of eHealth applications often fails. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework aims to identify complexities in eHealth applications; the more complex, the more risk of implementation failure.
Objective:
This study aimed to analyze the implementation of the web-based advance care planning (ACP) program “Explore Your Preferences for Treatment and Care” using the NASSS framework.
Methods:
The NASSS framework enables a systematic approach to improve the implementation of eHealth tools. It is aimed at generating a rich and situated analysis of complexities in multiple domains, based on thematic analysis of existing and newly collected data. It also aims at supporting individuals and organizations to handle these complexities. We used 6 of 7 domains of the NASSS framework (ie, condition, technology, value proposition, adopters, external context, and embedding and adaptation over time) leaving out “organization,” and analyzed the multimodal dataset of a web-based ACP program, its development and evaluation, including peer-reviewed publications, notes of stakeholder group meetings, and interviews with stakeholders.
Results:
This study showed that the web-based ACP program uses straightforward technology, is embedded in a well-established web-based health platform, and in general appears to generate a positive value for stakeholders. A complexity is the rather broad target population of the program. A potential complexity considers the limited insight into the extent to which health care professionals adopt the program. Awareness of the relevance of the web-based ACP program may still be improved among target populations of ACP and among health care professionals. Furthermore, the program may especially appeal to those who value individual autonomy, self-management, and an explicit and direct communicative approach.
Conclusions:
Relatively few complexities were identified considering the implementation of the web-based ACP program “Explore Your Preferences for Treatment and Care.” The program is evidence-based, freestanding, and well-maintained, with straightforward, well-understood technology. The program is expected to generate a positive value for different stakeholders. Complexities include the broad target population of the program and sociocultural factors. People with limited digital literacy may need support to use the program. Its uptake might be improved by increasing awareness of ACP and the program among a wider population of potential users and among health care professionals. Addressing these issues may guide future use and sustainability of the program.
Timing of advance care planning in patients with advanced cancer
Analysis of ACTION data
Journal article
(2025)
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Tingting Zhu, Judith AC Rietjens, Johannes J.M. van Delden, Luc Deliens, Agnes van der Heide, Anna Thit Johnsen, Francesca Ingravallo, Urška Lunder, Nancy J. Preston, More Authors...
Objective
To explore the experiences of patients with advanced cancer regarding the timing of ACP.
Methods
This secondary analysis used data from the ACTION cluster-randomized clinical trial. 288 patients with advanced lung or colorectal cancer, WHO performance status 0–3, and with a minimum life expectancy of 3 months were included in this analysis.
Results
The mean time between patients’ cancer diagnosis and the first ACP conversation was 15.3 months (SD:19.4). The average duration from current cancer stage diagnosis to the first conversation was 8.9 months (SD:10.7). The timing of the conversation was perceived as “just right” by 217 (75.3 %) of the patients. Patients who perceived the timing as “too early” were more recently diagnosed with cancer (9.1 months) or with their current cancer stage (5.7 months) than those who did not. Patients perceiving the timing as “too late” had shorter estimated survival times.
Conclusion
Patients with advanced cancer may benefit from earlier ACP than what is currently typically initiated in clinical practice.
Practice implications
When initiating ACP conversations, several aspects should be considered, including patients’ gender, their socio-cultural environment, and their ability to perform daily activities, with or without limitations. ...
To explore the experiences of patients with advanced cancer regarding the timing of ACP.
Methods
This secondary analysis used data from the ACTION cluster-randomized clinical trial. 288 patients with advanced lung or colorectal cancer, WHO performance status 0–3, and with a minimum life expectancy of 3 months were included in this analysis.
Results
The mean time between patients’ cancer diagnosis and the first ACP conversation was 15.3 months (SD:19.4). The average duration from current cancer stage diagnosis to the first conversation was 8.9 months (SD:10.7). The timing of the conversation was perceived as “just right” by 217 (75.3 %) of the patients. Patients who perceived the timing as “too early” were more recently diagnosed with cancer (9.1 months) or with their current cancer stage (5.7 months) than those who did not. Patients perceiving the timing as “too late” had shorter estimated survival times.
Conclusion
Patients with advanced cancer may benefit from earlier ACP than what is currently typically initiated in clinical practice.
Practice implications
When initiating ACP conversations, several aspects should be considered, including patients’ gender, their socio-cultural environment, and their ability to perform daily activities, with or without limitations. ...
Objective
To explore the experiences of patients with advanced cancer regarding the timing of ACP.
Methods
This secondary analysis used data from the ACTION cluster-randomized clinical trial. 288 patients with advanced lung or colorectal cancer, WHO performance status 0–3, and with a minimum life expectancy of 3 months were included in this analysis.
Results
The mean time between patients’ cancer diagnosis and the first ACP conversation was 15.3 months (SD:19.4). The average duration from current cancer stage diagnosis to the first conversation was 8.9 months (SD:10.7). The timing of the conversation was perceived as “just right” by 217 (75.3 %) of the patients. Patients who perceived the timing as “too early” were more recently diagnosed with cancer (9.1 months) or with their current cancer stage (5.7 months) than those who did not. Patients perceiving the timing as “too late” had shorter estimated survival times.
Conclusion
Patients with advanced cancer may benefit from earlier ACP than what is currently typically initiated in clinical practice.
Practice implications
When initiating ACP conversations, several aspects should be considered, including patients’ gender, their socio-cultural environment, and their ability to perform daily activities, with or without limitations.
To explore the experiences of patients with advanced cancer regarding the timing of ACP.
Methods
This secondary analysis used data from the ACTION cluster-randomized clinical trial. 288 patients with advanced lung or colorectal cancer, WHO performance status 0–3, and with a minimum life expectancy of 3 months were included in this analysis.
Results
The mean time between patients’ cancer diagnosis and the first ACP conversation was 15.3 months (SD:19.4). The average duration from current cancer stage diagnosis to the first conversation was 8.9 months (SD:10.7). The timing of the conversation was perceived as “just right” by 217 (75.3 %) of the patients. Patients who perceived the timing as “too early” were more recently diagnosed with cancer (9.1 months) or with their current cancer stage (5.7 months) than those who did not. Patients perceiving the timing as “too late” had shorter estimated survival times.
Conclusion
Patients with advanced cancer may benefit from earlier ACP than what is currently typically initiated in clinical practice.
Practice implications
When initiating ACP conversations, several aspects should be considered, including patients’ gender, their socio-cultural environment, and their ability to perform daily activities, with or without limitations.
Improving shared decision-making about cancer treatment through design-based data-driven decision-support tools and redesigning care paths
An overview of the 4D PICTURE project
Journal article
(2024)
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Judith A.C. Rietjens, Ingeborg Griffioen, Jorge Sierra-Pérez, Gaby Sroczynski, Uwe Siebert, Alena Buyx, Barbara Peric, Inge Marie Svane, Jasper B.P. Brands, More Authors...
Background:
Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients’ care paths.
Aim and objectives:
The central aim of the 4D PICTURE project is to redesign patients’ care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project.
Design, methods and analysis:
In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states.
Ethics:
Through an embedded ethics approach, we will address social and ethical issues.
Discussion:
Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency. ...
Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients’ care paths.
Aim and objectives:
The central aim of the 4D PICTURE project is to redesign patients’ care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project.
Design, methods and analysis:
In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states.
Ethics:
Through an embedded ethics approach, we will address social and ethical issues.
Discussion:
Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency. ...
Background:
Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients’ care paths.
Aim and objectives:
The central aim of the 4D PICTURE project is to redesign patients’ care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project.
Design, methods and analysis:
In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states.
Ethics:
Through an embedded ethics approach, we will address social and ethical issues.
Discussion:
Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency.
Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, support personalized care, improve health outcomes and promote health equity. However, decision-support tools currently seldom consider quality of life or individual preferences, and their use in clinical practice remains limited, partly because they are not well integrated in patients’ care paths.
Aim and objectives:
The central aim of the 4D PICTURE project is to redesign patients’ care paths and develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. This article presents an overview of this international, interdisciplinary project.
Design, methods and analysis:
In co-creation with patients and other stakeholders, we will develop data-driven decision-support tools for patients with breast cancer, prostate cancer and melanoma. We will support treatment decisions by using large, high-quality datasets with state-of-the-art prognostic algorithms. We will further develop a conversation tool, the Metaphor Menu, using text mining combined with citizen science techniques and linguistics, incorporating large datasets of patient experiences, values and preferences. We will further develop a promising methodology, MetroMapping, to redesign care paths. We will evaluate MetroMapping and these integrated decision-support tools, and ensure their sustainability using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework. We will explore the generalizability of MetroMapping and the decision-support tools for other types of cancer and across other EU member states.
Ethics:
Through an embedded ethics approach, we will address social and ethical issues.
Discussion:
Improved care paths integrating comprehensive decision-support tools have the potential to empower patients, their significant others and healthcare providers in decision-making and improve outcomes. This project will strengthen health care at the system level by improving its resilience and efficiency.
Cancer experience in metaphors
Patients, carers, professionals, students - A scoping review
The use of metaphors to talk about cancer experiences has attracted much research and debate, especially in the case of military metaphors. However, questions remain about what metaphors are used by different populations for different aspects of the cancer experience. This scoping review aims to answer them.
We searched PubMed, PsycINFO, CINAHL, Scopus and Web of Science databases. Eligible sources include peer-reviewed scientific research published in English between 2013 and 2023, investigating patterns of metaphor use from adult populations (age ≥18) for cancer-related topics, such as cancer itself, the general experience of being ill, treatment, and people and relationships.
Out of 1929 articles identified, 30 met the criteria, spanning over different populations. While most papers focused on cancer in general, some focused on specific cancer types, such as breast cancer. Both spontaneous and elicited data were collected in ten languages: mostly English (N=12), Swedish (N=3) and Arabic (N=3). The identified metaphors were subsumed under various broad categories, including particularly violence and journey. Other categories include education and non-human animate entity for the cancer itself, confinement and deprivation and cleanliness for the general experience of being ill with cancer, Poison and gardening for cancer treatment, and distance for patients’ social relationships.
It was found that metaphors help to identify how patients describe experiences of vulnerability and empowerment. To provide patient-centred care, clinicians and researchers should avoid blanket conclusions about helpful or unhelpful metaphors, but consider the ways in which different metaphors are used by different populations in different contexts. ...
We searched PubMed, PsycINFO, CINAHL, Scopus and Web of Science databases. Eligible sources include peer-reviewed scientific research published in English between 2013 and 2023, investigating patterns of metaphor use from adult populations (age ≥18) for cancer-related topics, such as cancer itself, the general experience of being ill, treatment, and people and relationships.
Out of 1929 articles identified, 30 met the criteria, spanning over different populations. While most papers focused on cancer in general, some focused on specific cancer types, such as breast cancer. Both spontaneous and elicited data were collected in ten languages: mostly English (N=12), Swedish (N=3) and Arabic (N=3). The identified metaphors were subsumed under various broad categories, including particularly violence and journey. Other categories include education and non-human animate entity for the cancer itself, confinement and deprivation and cleanliness for the general experience of being ill with cancer, Poison and gardening for cancer treatment, and distance for patients’ social relationships.
It was found that metaphors help to identify how patients describe experiences of vulnerability and empowerment. To provide patient-centred care, clinicians and researchers should avoid blanket conclusions about helpful or unhelpful metaphors, but consider the ways in which different metaphors are used by different populations in different contexts. ...
The use of metaphors to talk about cancer experiences has attracted much research and debate, especially in the case of military metaphors. However, questions remain about what metaphors are used by different populations for different aspects of the cancer experience. This scoping review aims to answer them.
We searched PubMed, PsycINFO, CINAHL, Scopus and Web of Science databases. Eligible sources include peer-reviewed scientific research published in English between 2013 and 2023, investigating patterns of metaphor use from adult populations (age ≥18) for cancer-related topics, such as cancer itself, the general experience of being ill, treatment, and people and relationships.
Out of 1929 articles identified, 30 met the criteria, spanning over different populations. While most papers focused on cancer in general, some focused on specific cancer types, such as breast cancer. Both spontaneous and elicited data were collected in ten languages: mostly English (N=12), Swedish (N=3) and Arabic (N=3). The identified metaphors were subsumed under various broad categories, including particularly violence and journey. Other categories include education and non-human animate entity for the cancer itself, confinement and deprivation and cleanliness for the general experience of being ill with cancer, Poison and gardening for cancer treatment, and distance for patients’ social relationships.
It was found that metaphors help to identify how patients describe experiences of vulnerability and empowerment. To provide patient-centred care, clinicians and researchers should avoid blanket conclusions about helpful or unhelpful metaphors, but consider the ways in which different metaphors are used by different populations in different contexts.
We searched PubMed, PsycINFO, CINAHL, Scopus and Web of Science databases. Eligible sources include peer-reviewed scientific research published in English between 2013 and 2023, investigating patterns of metaphor use from adult populations (age ≥18) for cancer-related topics, such as cancer itself, the general experience of being ill, treatment, and people and relationships.
Out of 1929 articles identified, 30 met the criteria, spanning over different populations. While most papers focused on cancer in general, some focused on specific cancer types, such as breast cancer. Both spontaneous and elicited data were collected in ten languages: mostly English (N=12), Swedish (N=3) and Arabic (N=3). The identified metaphors were subsumed under various broad categories, including particularly violence and journey. Other categories include education and non-human animate entity for the cancer itself, confinement and deprivation and cleanliness for the general experience of being ill with cancer, Poison and gardening for cancer treatment, and distance for patients’ social relationships.
It was found that metaphors help to identify how patients describe experiences of vulnerability and empowerment. To provide patient-centred care, clinicians and researchers should avoid blanket conclusions about helpful or unhelpful metaphors, but consider the ways in which different metaphors are used by different populations in different contexts.
Journal article
(2024)
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Helen P.A. Driessen, Evi M. Bakker, Judith A.C. Rietjens, Khanh L.N. Luu, Marjolein Lugtenberg, Frederika E. Witkamp, Leonieke W. Kranenburg
Objective
To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer.
Methods
An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements.
Results
Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed “continuing to do the same activities as done before the disease,” “difficulty accepting the situation,” “avoiding to think about the disease,” and “living in the short term.” Accommodative strategies involved “arranging practical matters,” “thinking about the future,” “doing what is feasible,” “engaging in new activities,” “accepting the situation,” “seeking distraction,” “living in the short term,” and “focusing on what truly matters in life.” The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies.
Conclusion
When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances. ...
To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer.
Methods
An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements.
Results
Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed “continuing to do the same activities as done before the disease,” “difficulty accepting the situation,” “avoiding to think about the disease,” and “living in the short term.” Accommodative strategies involved “arranging practical matters,” “thinking about the future,” “doing what is feasible,” “engaging in new activities,” “accepting the situation,” “seeking distraction,” “living in the short term,” and “focusing on what truly matters in life.” The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies.
Conclusion
When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances. ...
Objective
To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer.
Methods
An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements.
Results
Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed “continuing to do the same activities as done before the disease,” “difficulty accepting the situation,” “avoiding to think about the disease,” and “living in the short term.” Accommodative strategies involved “arranging practical matters,” “thinking about the future,” “doing what is feasible,” “engaging in new activities,” “accepting the situation,” “seeking distraction,” “living in the short term,” and “focusing on what truly matters in life.” The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies.
Conclusion
When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances.
To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer.
Methods
An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements.
Results
Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed “continuing to do the same activities as done before the disease,” “difficulty accepting the situation,” “avoiding to think about the disease,” and “living in the short term.” Accommodative strategies involved “arranging practical matters,” “thinking about the future,” “doing what is feasible,” “engaging in new activities,” “accepting the situation,” “seeking distraction,” “living in the short term,” and “focusing on what truly matters in life.” The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies.
Conclusion
When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances.
Failed implementation of a nursing intervention to support family caregivers
An evaluation study using Normalization Process Theory
Aim
To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT).
Design
An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes.
Methods
Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its ‘normalization’, consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring.
Results
Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice.
Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages.
Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload.
Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation.
Conclusion
Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention.
Implications for the Profession and/or Patient Care
Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study.
Impact
What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care.
What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment.
Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders.
Reporting Method
This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR).
Patient or Public Contribution
There was no patient or public involved.
Trial Registration
The trial was prospectively registered on the Dutch Trial Register (NL7702). ...
To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT).
Design
An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes.
Methods
Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its ‘normalization’, consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring.
Results
Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice.
Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages.
Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload.
Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation.
Conclusion
Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention.
Implications for the Profession and/or Patient Care
Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study.
Impact
What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care.
What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment.
Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders.
Reporting Method
This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR).
Patient or Public Contribution
There was no patient or public involved.
Trial Registration
The trial was prospectively registered on the Dutch Trial Register (NL7702). ...
Aim
To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT).
Design
An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes.
Methods
Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its ‘normalization’, consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring.
Results
Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice.
Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages.
Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload.
Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation.
Conclusion
Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention.
Implications for the Profession and/or Patient Care
Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study.
Impact
What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care.
What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment.
Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders.
Reporting Method
This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR).
Patient or Public Contribution
There was no patient or public involved.
Trial Registration
The trial was prospectively registered on the Dutch Trial Register (NL7702).
To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT).
Design
An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes.
Methods
Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its ‘normalization’, consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring.
Results
Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice.
Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages.
Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload.
Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation.
Conclusion
Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention.
Implications for the Profession and/or Patient Care
Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study.
Impact
What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care.
What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment.
Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders.
Reporting Method
This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR).
Patient or Public Contribution
There was no patient or public involved.
Trial Registration
The trial was prospectively registered on the Dutch Trial Register (NL7702).
“There is a life before and after cancer”
Experiences of resuming life and unmet care needs in stage I and II melanoma survivors
Journal article
(2024)
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N. C.W. Kamminga, J.E.C. Kievits, M. Lugtenberg, M. Wakkee, S.G.W.van Loon, M.C.W. Joosen, D. Verver, K. Munte, P. W.P. Plaisier, J. A.C. Rietjens, T. E.C. Nijsten
Although the largest increase in melanoma incidence is observed for localised melanoma, little research has been done on its impact. Despite favourable prognoses and relatively short treatment trajectories, diagnosis and treatment may significantly impact life post-treatment. Therefore, the aim of this study was to gain an in-depth understanding of stage I and II melanoma survivors’ experiences resuming life after treatment and their associated survivorship care (SSC) needs. A qualitative focus group study was conducted with 18 stage I or II melanoma survivors, divided over three focus groups with 6 survivors each. Transcripts were analysed through thorough thematic content analysis, using multiple phases of coding. In resuming life, survivors experienced profound initial impacts of disease and treatment, fed by a perceived lack of knowledge and underestimation of melanoma. They faced unexpected physical and emotional effects post-surgery, experiencing mixed feelings from relief to fear and uncertainty. Survivors felt misunderstood, had to adjust their lives, and managed personal and external expectations while experiencing a positive shift in life perspective, leading to a notable difference in life before and after cancer. In terms of SSC needs, survivors stressed the need for tailored information, accessible resources, patient-centered follow-up, and supportive care addressing the total impact of disease and treatment. These findings highlight the importance of improving melanoma awareness and providing holistic SSC not only to advanced, but also to localised melanoma survivors. A tailored survivorship care plan could facilitate access to information and supportive care, helping patients resume their lives.
...
Although the largest increase in melanoma incidence is observed for localised melanoma, little research has been done on its impact. Despite favourable prognoses and relatively short treatment trajectories, diagnosis and treatment may significantly impact life post-treatment. Therefore, the aim of this study was to gain an in-depth understanding of stage I and II melanoma survivors’ experiences resuming life after treatment and their associated survivorship care (SSC) needs. A qualitative focus group study was conducted with 18 stage I or II melanoma survivors, divided over three focus groups with 6 survivors each. Transcripts were analysed through thorough thematic content analysis, using multiple phases of coding. In resuming life, survivors experienced profound initial impacts of disease and treatment, fed by a perceived lack of knowledge and underestimation of melanoma. They faced unexpected physical and emotional effects post-surgery, experiencing mixed feelings from relief to fear and uncertainty. Survivors felt misunderstood, had to adjust their lives, and managed personal and external expectations while experiencing a positive shift in life perspective, leading to a notable difference in life before and after cancer. In terms of SSC needs, survivors stressed the need for tailored information, accessible resources, patient-centered follow-up, and supportive care addressing the total impact of disease and treatment. These findings highlight the importance of improving melanoma awareness and providing holistic SSC not only to advanced, but also to localised melanoma survivors. A tailored survivorship care plan could facilitate access to information and supportive care, helping patients resume their lives.
Definition and recommendations of advance care planning
A Delphi study in five Asian sectors
Journal article
(2024)
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Masanori Mori, Helen Y.L. Chan, Cheng-Pei Lin, Sun-Hyun Kim, Raymond Ng Han Lip, Diah Martina, Kwok Keung Yuen, Shao-Yi Cheng, Judith A.C. Rietjens, More authors...
Background:
In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning.
Aim:
To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia.
Design:
A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0–1 were considered very strong agreement and very strong consensus, respectively.
Setting/participants:
The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan).
Results:
Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as “a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate.” Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus.
Conclusions:
Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care. ...
In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning.
Aim:
To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia.
Design:
A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0–1 were considered very strong agreement and very strong consensus, respectively.
Setting/participants:
The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan).
Results:
Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as “a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate.” Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus.
Conclusions:
Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care. ...
Background:
In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning.
Aim:
To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia.
Design:
A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0–1 were considered very strong agreement and very strong consensus, respectively.
Setting/participants:
The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan).
Results:
Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as “a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate.” Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus.
Conclusions:
Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care.
In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning.
Aim:
To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia.
Design:
A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0–1 were considered very strong agreement and very strong consensus, respectively.
Setting/participants:
The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan).
Results:
Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as “a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate.” Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus.
Conclusions:
Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care.
Coping Strategies of Patients With Advanced Lung or Colorectal Cancer Over Time
Insights From the International ACTION Study
Journal article
(2024)
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K. L. Luu, P. Mager, D. Nieboer, F. E. Witkamp, L. J. Jabbarian, S. Payne, K. Pollock, G. Miccinesi, J. A.C. Rietjens, More authors...
OBJECTIVE: A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors. METHODS: Data from 675 patients of the control group from the ACTION cluster-randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem-focused coping (COPE, Brief COPE inventory; scores 4-16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies. RESULTS: At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem-Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem-Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem-Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%). CONCLUSIONS: Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories.
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OBJECTIVE: A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors. METHODS: Data from 675 patients of the control group from the ACTION cluster-randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem-focused coping (COPE, Brief COPE inventory; scores 4-16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies. RESULTS: At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem-Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem-Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem-Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%). CONCLUSIONS: Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories.
Consensus definition of advance care planning in dementia
A 33-country Delphi study
Journal article
(2023)
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Jenny T. van der Steen, Miharu Nakanishi, Lieve Van den Block, Paola Di Giulio, Silvia Gonella, Jürgen in der Schmitten, Rebecca L. Sudore, Karen Harrison Dening, Judith A.C. Rietjens, More authors...
INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.
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INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.
Unmet care needs of patients with advanced cancer and their relatives
Multicentre observational study
Journal article
(2023)
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Helen P.A. Driessen, Jan J.V. Busschbach, Carin C.D. Van Der Rijt, Erna J. Elfrink, Natasja J.H. Raijmakers, Janneke Van Roij, Judith Rietjens, Leonieke W. Kranenburg
Objectives: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support. Methods: This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients' and relatives' care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected. Results: 1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of â € psychological issues'. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was â € worrying about the future of my loved ones' (22.0%); for relatives this was â € fear for physical suffering of the patient' (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs. Conclusions: The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics.
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Objectives: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support. Methods: This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients' and relatives' care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected. Results: 1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of â € psychological issues'. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was â € worrying about the future of my loved ones' (22.0%); for relatives this was â € fear for physical suffering of the patient' (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs. Conclusions: The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics.
MetroMapping
Development of a methodology to redesign care paths to support Shared Decision Making
Abstract
(2023)
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I.P.M. Griffioen-Van Dijk, M. Melles, J.A.C. Rietjens, Marion Van der Kolk, H.M.J.J. Snelders, Anne Stiggelbout
To support shared decision-making (SDM), in- itiatives are often focussed mainly on communication in the en- counter and the use of decision aids. Our previous research (Griffioen et al. Cancer Med 2021) revealed: decision-making as a sequence of (un)planned moments before, during, after the con- sultation; work for patients and relatives to acquire/understand/re- call information; often unclear roles and tasks, and unexpected energy drains (due to, e.g., changes in the trajectory). We aimed to develop a service design methodology to improve SDM. The entire patient journey is considered a service. All ‘touch points’ (leaflets, devices, etc.) become parts of a consistent service, supporting stakeholders’ decision making. We used oncology as a case.
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To support shared decision-making (SDM), in- itiatives are often focussed mainly on communication in the en- counter and the use of decision aids. Our previous research (Griffioen et al. Cancer Med 2021) revealed: decision-making as a sequence of (un)planned moments before, during, after the con- sultation; work for patients and relatives to acquire/understand/re- call information; often unclear roles and tasks, and unexpected energy drains (due to, e.g., changes in the trajectory). We aimed to develop a service design methodology to improve SDM. The entire patient journey is considered a service. All ‘touch points’ (leaflets, devices, etc.) become parts of a consistent service, supporting stakeholders’ decision making. We used oncology as a case.