A new self-management engagement scale for haemodialysis patients (PRIESM CKD-HD): development and validation

Background Self-management should be better defined within kidney research and clinical practice. A focus on dialysis related tasks and adherence continues to be central to current measures. PRIESM CKD-HD (Patient Reported Instrument for Engagement in Self-Management for people with Chronic Kidney Disease, receiving Haemodialysis) aligns with a biopsychosocial model and measures engagement in self-management by people receiving haemodialysis (HD). This provides the opportunity to identify gaps and foster discussion about targeted support. Methods Scale development was undertaken using a sequential mixed-methods approach, comprising literature review, qualitative interviews with HD patients (n = 27), expert consensus (n = 19) and cognitive testing (n = 11). A large-scale survey (n = 363) across three kidney centres was conducted to validate the scale, with subgroup follow-up 4–6 weeks later. Exploratory factor analyses were conducted to assess model fit, reliability and validity. Results PRIESM CKD-HD is a valid and reliable measurement. Exploratory factor analysis indicated a three-factor model consisting of daily managing and impact (α = 0.91), communication (α = 0.84) and clinical care (α = 0.66). Model statistics, χ2 = 703, 296 df, P < .001, CFI = 0.87, TLI = 0.86, RMSEA = 0.07, SRMR = 0.07, overall α = 0.92. Correlation with measures of depression [r(328) = –0.74, P < .001] and self-efficacy [r(337) = 0.75, P < .001] provided further evidence of validity. Test–retest reliability r = 0.84, P < .001, indicates good linear agreement over time (n = 95). Conclusions PRIESM CKD-HD is the first measure of self-management that reframes the concept from the patient perspective and incorporates the psychosocial aspects of treatment impact and daily managing for HD patients. Findings suggest the perception that not all individuals wish to self-manage should be refuted.