#5964 E-COLLECTION OF PATIENT REPORTED EXPERIENCES AND OUTCOMES IN CHILDREN AND ADULTS WITH KIDNEY DISEASE: A PILOT FEASIBILITY STUDY

Abstract

Abstract Background and Aims Patient feedback, including collection of patient-reported experience (PREMs) and outcome measures (PROMs), is an essential component of patient-centered care implementation. We performed a pilot study of an integrated electronic approach to collect PROMs and PREMs in patients with kidney diseases across all age groups. In addition, we aimed to explore potential associations between PREMs and PROMs. Method 92 parents of children with kidney disease and 134 adult patients followed in nephrology outpatient clinic at a single university hospital consented to receive automated surveys to their emails. The group consisted of patients (and parents of children) with kidney diseases that require long-term management, including chronic kidney disease, post-kidney transplantation, glomerular diseases and rare kidney diseases. Surveys consisted of an originally created PREM questionnaire and well established generic PROM questionnaires (age-dependent PedsQL for parents as proxies and EQ-5D for adults). PREM questionnaires consisted of 12 questions with 5-point Likert scale answers, encompassing experiences throughout all patient journey (including primary, secondary and tertiary care, and social/rehabilitation services). Higher scores in PREM questionnaire and in EQ-5D indicated worse experiences or worse PROMs evaluation (except for overall health), while higher score in PedsQL indicated better PROMs assessment. Surveys were generated and sent using REDCap system with the entire process integrated into hospital‘s electronic medical record system. Results 48 (52%) parents and 60 (45%) adult patients completed both questionnaires. In adult patients, median completion times of PREM and PROM surveys were 5.0 and 2.2 minutes, respectively. Among parents, median PREM survey filling time was 1.7 minutes and PROM surveys filling time ranged between 2.7 and 3.8 minutes. Adult patients, who evaluated their mobility worse, reported experiencing more problems throughout diagnosis establishment process (r = 0.3, p = 0.049) and better experiences in rehabilitation (r = −0.37, p = 0.015). Worse self-care evaluation and reporting more pain/anxiety correlated with better experiences in psychological support (r = −0.3, p = 0.049 and r = −0.34, p = 0.026). Worse overall health self-evaluation associated with worse experiences in diagnosis establishment process (r = −0.37, p = 0.035). Parents evaluating their childrens` physical health as worse reported more negative experiences in diagnosis establishment process (r = −0.31, p = 0.028), more technical difficulties in the healthcare process (r = −0.47, p = 0.001) and worse information provision (r = −0.31, p = 0.031). Similar associations with PREMs were observed with social and global PROMs domains (all p<0.05). Conclusion Electronic integrated collection of PREMs and PROMs in patients with chronic kidney disorders is feasible but attempts to promote higher patient engagement are needed. Observed associations between PROMs and PREMs point towards potential benefits of long-term integrated patient feedback collection for targeted healthcare services quality improvement.