Introduction Kidney failure negatively affects opportunities for work participation. Little is known about work functioning of employed CKD patients. This study investigates work-related outcomes,... Show moreIntroduction Kidney failure negatively affects opportunities for work participation. Little is known about work functioning of employed CKD patients. This study investigates work-related outcomes, and examines associations between patient characteristics and employment status. Methods We performed a cross-sectional survey study in nine nephrology outpatient clinics in the Netherlands among working age (18-67 years) CKD Stage G3b-G5, dialysis and transplant patients (n = 634; mean age 53.4 years (SD 10); 53% male; 47% Stage G3b-G5, 9% dialysis, 44% transplantation). We assessed employment status, work disability, work-related characteristics (i.e., work situation, working hours, job demands), work functioning (i.e., perceived ability to work, productivity loss, limitations in work), work environment (i.e., work accommodations, psychosocial work environment), as well as health status and fatigue. Results Sixty-five percent were employed reporting moderate work ability. Of those, 21% received supplementary work disability benefits, 37% were severely fatigued, 7% expected to drop out of the workforce, and 49% experienced CKD-related work limitations. Work accommodations included reduced working hours, working at a slower pace, adjustment of work tasks or work schedule, and working from home. Multivariable analysis of sustained employment showed associations with younger age, male gender, higher level of education, better general and physical health and pre-emptive transplantation. Transplant patients had the highest work ability and highest expectation to maintain work. Dialysis patients had the highest productivity loss and perceived the most limitations regarding functioning in work. Stage G3b-G5 patients reported the lowest social support from colleagues and highest conflict in work and private life. Conclusions Employed CKD patients experience difficulties regarding functioning in work requiring adjustment of work or partial work disability. In addition to dialysis patients, stage G3b-G5 patients are vulnerable concerning sustained employment and work functioning. Show less
Background: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making ... Show moreBackground: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making (SDM). These outcomes can be presented over time in a clear way by the means of dashboarding. We aimed to systematically develop a Chronic Kidney Disease (CKD) dashboard designed to support consultations, test its usability and explore conditions for optimal use in practice. Methods: For development a participatory approach with patients and healthcare professionals (HCPs) from three hospitals was used. Working groups and patient focus groups were conducted to identify needs and inform the dashboard's design. Usability was tested in patient interviews. A focus group with HCPs was held to identify conditions for optimal use of the dashboard in daily practice. Results: A dashboard was developed for CKD patients stage 3b-4 visualizing both clinical and patient-reported outcomes over time for use during consultations and accessible for patients at home. Both HCPs and patients indicated that the dashboard can: motivate patients in their treatment by providing feedback on outcomes over time; improve consultation conversations by enhanced preparation of both HCPs and patients; better inform patients, thereby facilitating shared decision making. HCPs and patients both stated that setting a topic agenda for the consultation together is important in effectively discussing the dashboard during consultations. Moreover, the dashboard should not dominate the conversation. Lastly, findings of the usability tests provided design requirements for optimal user-friendliness and clarity. Conclusions: Dashboarding can be a valuable way of reporting individual outcome information to patients and their clinicians as findings suggest it may stimulate patient activation and facilitate decision making. Co-creation with patients and HCPs was essential for successful development of the dashboard. Gained knowledge from the co-creation process can inform others wishing to develop similar digital tools for use in clinical practice. Show less
Sexual health and fertility does not come naturally for men and women suffering chronic kidney disease (CKD); sexual dysfunction and fertility issues are common throughout all stages of disease,... Show moreSexual health and fertility does not come naturally for men and women suffering chronic kidney disease (CKD); sexual dysfunction and fertility issues are common throughout all stages of disease, including dialysis and transplantation. These issues, alongside with other side-effects of CKD, affect patients social and relation life as well. Besides, their partners often fulfill an important and supportive role during intensive treatments or a lingering sickbed. As a result, the disease and the accompanying burdens affect also their partners’ well-being on several levels.Since CKD patients and their partners face multiple challenges in the area of sexuality, fertility, and relationships one could assume awareness about these difficulties exist among their care providers. Unfortunately, this thesis shows that renal care providers do not routinely discuss sexuality with their patients, underlying reasons varied between the different renal care providers. Whereas the results imply that providing an opportunity to discuss sexuality during is preferred by patients and their partners, especially after renal transplantations.As for fertility, most nephrologists include this subject in their consultation. However nurses of the nephrology department could also play an important role in addressing this part of renal care, however, insufficient knowledge is a retaining factor for them. Show less
