For people with chronic kidney disease (CKD), adhering to a range of self-management tasks—such as healthy eating, frequent physical activity, and non-smoking—is crucial. However, changing health... Show moreFor people with chronic kidney disease (CKD), adhering to a range of self-management tasks—such as healthy eating, frequent physical activity, and non-smoking—is crucial. However, changing health behaviors is difficult. To support patients in doing so, an eHealth care pathway was developed and evaluated. The results provide different insights into patients' priorities and care needs. Many individuals with CKD experience problems in self-management, which can be hindered by many different barriers of which a common one is psychological distress. Therefore, personalized interventions are needed with screening and treatment of both psychological distress and suboptimal self-management, tailored to the specific barriers and needs of the individual patient. The E-GOAL eHealth care pathway is an example of such a personalized intervention, combining cognitive behavioral therapy with self-management support. Patients were enthusiastic about the eHealth care pathway. However, in a randomized study, the intervention was not effective in reducing psychological distress compared with regular care only. Patients did experience improvements in areas of functioning and self-management that they prioritized themselves. These mixed results show that interventions could be implemented that are person-tailored, with personalized outcomes that reflect individually meaningful treatment goals and improvements for every patient. Show less
Tommel, J.; Evers, A.W.M.; Hamersvelt, H.W. van; Dijk, S. van; Chavannes, N.H.; Wirken, L.; ... ; Middendorp, H. van 2022
Background: Kidney failure and dialysis treatment have a large impact on a patient's life. Patients experience numerous, complex symptoms and usually have multiple comorbid conditions. Despite the... Show moreBackground: Kidney failure and dialysis treatment have a large impact on a patient's life. Patients experience numerous, complex symptoms and usually have multiple comorbid conditions. Despite the multitude of problems, patients often have priorities for improvement of specific aspects of their functioning, which would be helpful for clinicians to become informed of. This highlights a clear need for patient-centered care in this particular patient group, with routine screening as a vital element to timely recognize symptoms and tailored treatment to match individual patients' needs and priorities. By also providing feedback on patient's screening results to the patient itself, the patient is empowered to actively take control in one's mostly uncontrollable disease process. The current paper describes the study design of a multicenter randomized controlled trial evaluating the effectiveness of the "E-HEealth treatment in Long-term Dialysis" (E-HELD) intervention. This therapist-guided Internet-based cognitive-behavioral therapy (ICBT) intervention is focused on and personalized to the myriad of problems that dialysis patients experience and prioritize. Methods: After a screening procedure on adjustment problems, 130 eligible dialysis patients will be randomized to care as usual or the E-HELD intervention. Patients will complete questionnaires on distress (primary outcome measure), several domains of functioning (e.g., physical, psychological, social), potential predictors and mediators of treatment success, and the cost-effectiveness of the intervention, at baseline, 6-month follow-up, and 12-month follow-up. In addition, to take account of the personalized character of the intervention, the Personalized Priority and Progress Questionnaire (PPPQ) will be administered which is a personalized instrument to identify, prioritize, and monitor individual problems over time. Discussion: The present study design will provide insight in the effectiveness of tailored ICBT in patients with kidney failure who are treated with dialysis. When proven effective, the screening procedure and the subsequent ICBT intervention could be implemented in routine care to detect, support, and treat patients struggling with adjustment problems. Show less
