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Evelien S. van Hoorn

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Review (2025) - 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. ...

A Qualitative Study on Caregivers’ and Healthcare Providers’ Perspectives

Journal article (2025) - Caroline M.A. Mussert, Nadia C.W. Kamminga, Evelien S. van Hoorn, Tjaisha M. Eekelaar, Silje R. Dehli, Carolien van der Velden-van ‘t Hoff, Sasja Andeweg, Armaĝan Albayrak, Marjon H. Cnossen, More authors...
Introduction
In haemophilia, ever more effective treatment options leading to minimal bleeding make information provision about the disease and its symptoms and when to alert the treatment team increasingly important. However, little is known about how current information provision is perceived and what the needs are.

Aim
Gain in-depth insights into experiences and needs regarding information provision of caregivers of young children with haemophilia, and the perspectives of their healthcare providers (HCPs).

Methods
A qualitative study was conducted including 15 semi-structured interviews with caregivers and seven interviews with HCPs. Purposive sampling ensured a varied sample regarding the child's age, type and severity of haemophilia, and treatment strategy. A comprehensive thematic content analysis was subsequently conducted using several phases of coding.

Results
Three main themes were identified. First, caregivers and HCPs indicated that current disease knowledge and information provision regarding haemophilia varies and could be improved. Both groups underlined the importance of adequate information provision to support decision-making and alleviate anxiety. Second, the need for standardized, centralized and tailored information was expressed, preferably digital. Current information is experienced as fragmented and incomplete, leading to lack of structure and uncertainties. Lastly, information provision cannot exist without additional coaching by the multidisciplinary treatment team and peers.

Conclusion
Both caregivers and HCPs experience unmet needs regarding information provision as currently performed. Empowerment can be provided by standardized, centralized information tailored to disease severity and phase of life. A digital information platform with visual support, could provide a complete, up-to-date, readily available and reliable resource. ...