Rationale & Objective: Patients with chronic kidney disease (CKD) not receiving dialysis, including kidney transplant recipients, often experience difficulties regarding self-management. An important barrier for adherence to self-management recommendations may be the presence of psychological distress, consisting of depressive and anxiety symptoms. We investigated relationships between psychological distress and adherence to self-management recommendations. Study Design: Cross-sectional online questionnaire data as part of the E-GOAL study. Setting & Participants: Patients with CKD (estimated glomerular filtration rate, 20-89 mL/min/1.73 m²) were recruited from April 2018 to October 2020 at 4 hospitals in The Netherlands and completed online screening questionnaires. Exposures: Psychological distress, depressive symptoms, and anxiety symptoms. Outcomes: Dietary adherence, physical activity, medication adherence, smoking, body mass index, and a CKD self-management index (ie, the sum of 5 binary indicators of nonadherence to the recommended self-management factors). Analytical Approach: Adjusted multivariable regression and ordinal logistic regression analyses. Results: In our sample (N = 460), 27.2% of patients reported psychological distress, and 69.8% were nonadherent to 1 or more recommendations. Higher psychological distress was significantly associated with poorer dietary adherence (β^adj, −0.13; 95% CI, −0.23 to −0.04), less physical activity (β^adj, −0.13; 95% CI, −0.22 to −0.03), and lower medication adherence (β^adj, −0.15; 95% CI, −0.24 to −0.05), but not with smoking and body mass index. Findings were similar for depressive symptoms, whereas anxiety was only associated with poorer dietary and medication adherence. Every 1-point higher psychological distress was also associated with a higher likelihood of being nonadherent to an accumulating number of different recommendations (adjusted OR, 1.04; 95% CI, 1.02-1.07). Limitations: Cross-sectional design, possible residual confounding, and self-report. Conclusions: Many people with CKD experience psychological distress, of whom most have difficulties self-managing their CKD. Given the relationship between psychological distress and adherence to CKD self-management recommendations, behavioral interventions are needed to identify and treat psychological distress as a potential barrier to CKD self-management. Plain-Language Summary: This online questionnaire study investigated relationships between psychological distress and self-management among 460 people with chronic kidney disease. Over a quarter of them reported mild-to-severe psychological distress. Alarmingly, 4 out of 5 patients with psychological distress were also nonadherent to 1 or more self-management recommendations, and higher levels of psychological distress were associated with poorer dietary and medication adherence and lower physical activity. Moreover, patients who suffered from moderate-to-severe distress were relatively more often nonadherent to 3 or more recommendations compared with patients with no or mild distress symptoms. So, it seems that psychological distress can be a barrier for self-management. To support patients in managing chronic kidney disease, researchers and health professionals should not overlook patients’ mental health.

Objective Psychological distress is common among patients with chronic kidney disease and can interfere with disease self-management. We assessed the effectiveness of the personalized E-GOAL electronic health care pathway with screening and cognitive-behavioral therapy including self-management support, aimed to treat psychological distress and facilitate self-management among people with chronic kidney disease not on dialysis (N = 121). Methods Primary outcome of the open two-arm parallel randomized controlled trial in four Dutch hospitals was psychological distress at posttest directly after the intervention and at 3-month follow-up. Secondary outcomes were physical and mental health-related quality of life, self-efficacy, chronic disease self-management, and personalized outcomes, that is, perceived progress compared with the previous time point on functioning (e.g., mood or social functioning) and self-management (e.g., dietary or medication adherence) outcomes that were prioritized by each individual. Results Linear mixed-effects analyses showed no significant time-by-group interaction effects for psychological distress, health-related quality of life, self-efficacy, and chronic condition self-management, whereas analyses of covariance showed significantly more perceived progress in the intervention group at posttest on personally prioritized areas of functioning (b = 0.46, 95% confidence interval = 0.07-0.85) and self-management (b = 0.55, 95% confidence interval = 0.16-0.95), with Cohen d values of 0.46 and 0.54 (medium effects), respectively. Effects on personalized outcomes were maintained at follow-up. Conclusions Compared with regular care only, the electronic health intervention did not reduce psychological distress, whereas personalized outcomes did improve significantly after intervention. Future studies could consider personalized outcomes that reflect individually relevant areas and treatment goals, matching person-tailored treatments.

Personalization of eHealth systems is a promising technique for improving patients’ adherence. This paper explores the possibility of personalisation based on the patients’ medical health situation and on their health literacy. The study is set within the context of a self-management support system (SMSS) for renal transplant patients. A SMSS is designed with layering, nudging, emphaticizing, and focusing principles. It has two communication styles: (1) a guided style that provided more interpretation support and addressed emotional needs; and (2) a factual style that showed only measurement history, medical information, and recommendations. To evaluate the design, 49 renal transplant patients with three different experience levels participated in a lab study, in which they used the system in imaginary scenarios to deal with three medical health situations (alright, mild concern, and concern). A 96% understanding and 87% adherence rate was observed, with a significant interaction effect on adherence between patient group and health situation. Furthermore, compared to recently transplanted patients, not recently transplanted patients were relatively more positive towards the factual than the guided communication style in the “alright” condition. Furthermore, additional medical information was searched more often in health situations that causes mild concern and a majority of patients did not change the communication style to their preferred styles. By attuning the communication style to patient’s experience and medical health situation according to the applied principles and acquired insights, SMSSs are expected to be better used.

Background: The high frequency of outpatient visits after kidney transplantation is burdensome to both the recovering patient and health care capacity. Self-monitoring kidney function offers a promising strategy to reduce the number of these outpatient visits. Objective: The objective of this study was to investigate whether it is safe to rely on patients’ self-measurements of creatinine and blood pressure, using data from a self-management randomized controlled trial. Methods: For self-monitoring creatinine, each participant received a StatSensor Xpress-i Creatinine Meter and related test material. For self-monitoring blood pressure, each participant received a Microlife WatchBP Home, an oscillometric device for blood pressure self-measurement on the upper arm. Both devices had a memory function and the option to download stored values to a computer. During the first year post transplantation, 54 patients registered their self-measured creatinine values in a Web-based Self-Management Support System (SMSS) which provided automatic feedback on the registered values (eg, seek contact with hospital). Values registered in the SMSS were compared with those logged automatically in the creatinine device to study reliability of registered data. Adherence to measurement frequency was determined by comparing the number of requested with the number of performed measurements. To study adherence to provided feedback, SMSS-logged feedback and information from the electronic hospital files were analyzed. Results: Level of adherence was highest during months 2-4 post transplantation with over 90% (42/47) of patients performing at least 75% of the requested measurements. Overall, 87.00% (3448/3963) of all registered creatinine values were entered correctly, although values were often registered several days later. If (the number of) measured and registered values deviated, the mean of registered creatinine values was significantly lower than what was measured, suggesting active selection of lower creatinine values. Adherence to SMSS feedback ranged from 53% (14/24) to 85% (33/39), depending on the specific feedback. Conclusions: Patients’ tendency to postpone registration and to select lower creatinine values for registration and the suboptimal adherence to the feedback provided by the SMSS might challenge safety. This should be well considered when designing self-monitoring care systems, for example by ensuring that self-measured data are transferred automatically to an SMSS.

Purpose of this study was to assess whether living (LD) and deceased donor (DD) kidney transplant recipients differ in health-related quality of life (HRQoL), fatigue and societal participation, depending on time since transplantation and after adjustment for clinical and demographic variables. A questionnaire study was performed among 309 LD and 226 DD recipients (response rate 74% and 61%) transplanted between 1997 and 2009. After adjustment for age, sex, and education, LD recipients transplanted less than or equal to five yr ago experienced better HRQoL than DD recipients on the domains' role limitations due to physical problems, general health perception, and on the physical component summary score (all p < 0.05) and a better societal participation (all subscales, p < 0.05). No differences were found in the mental health domains. The LD recipients also had better renal clearance than DD recipients (62.1 vs. 55.9 mL/min, p = 0.01). After additional adjustment for renal clearance, the differences in HRQoL and societal participation between LD and DD recipients remained. No differences were found in recipients transplanted more than five yr ago. We conclude that LD recipients on average have better HRQoL and societal participation than DD recipients, in the first years after transplantation.

Health related quality of life (HRQoL) of living kidney donors on average is good, but some donors experience a low HRQoL after donation. This study assessed the prevalence of reduced HRQoL and explored associations with pre- and post-donation variables. 316 donors (response rate 74%) who donated a kidney between 1997 and 2009 filled in a questionnaire. HRQoL was measured using the Short-Form 36; fatigue using the Multidimensional Fatigue Inventory; societal participation using the Utrecht Scale for Evaluation of Rehabilitation- Participation. Donors on average had better HRQoL than the general population. However, 12% had a reduced physical (PCS) and 18% a reduced mental (MCS) HRQoL. Donors with reduced HRQoL reported greater fatigue (P < 0.01), lower societal participation (P < 0.01) and showed a trend towards statistical significance in experiencing more donor-recipient relationship changes (P = 0.07). Prior to donation, donors with reduced PCS had a higher BMI (P < 0.05) and more often smoked (P < 0.05). Donors with reduced MCS had higher expectations (P < 0.05). Reduced HRQoL is associated with higher BMI, smoking and higher expectations prior to donation. These results may be used to develop a screening instrument to select donors at high risk for reduced HRQoL.

Background: Limited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced. Methods. We conducted 6 focus groups in 47 of 114 invited individuals (41%), asking retrospectively about motivations and decision making around transplantation. We used qualitative and quantitative methods to analyze the focus group transcripts. Results: Most deceased donor kidney recipients had a potential living donor available which they refused or did not want. They mostly waited for a deceased donor because of concern for the donors health (75%). They more often expected negative relationship changes than living donor kidney recipients (75% vs. 27%, p=0.01) who also expected positive changes. Living donor kidney recipients mostly accepted the kidney to improve their own quality of life (47%). Donors mostly donated a kidney because transplantation would make the recipient less dependent (25%). After transplantation both positive and negative relationship changes are experienced. Conclusion: Expected relationship changes and concerns about the donors health lead some kidney patients to wait for a deceased donor, despite having a potential living donor available. Further research is needed to assess whether this concerns a selected group.