Abstract Background and Aims Self-management skills can be an important asset to patients with a chronic disease. Inadequate disease-related self-management skills can lead to reduced control of the disease, which may eventually lead to poorer health outcomes and health-related quality of life (HRQoL). Self-management involves a variety of domains, such as self-efficacy (i.e., confidence in own abilities), coping (i.e., how someone deals with difficult situations) and locus of control (i.e., the extent to which individuals feel they have control over situations and experiences that affect their lives). Self-management may especially play an important role for dialysis patients, due to the chronicity of their disease, the multimorbidity and the adverse outcomes these patients may experience. Nonetheless, information remains lacking on self-management in these patients, impeding identification of patients in whom self-management may be improved. Thus, we aimed to identify barriers for self-management in dialysis patients and in which patient subgroups these barriers may play an important role. Method Individuals were included from the Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO); a multicenter cohort study comparing in-center with home dialysis. Incident dialysis patients of ≥18 years who were expected to dialyse for at least three months were eligible for inclusion. Extensive data collection was performed, including the Self-Management Screening (SeMaS) questionnaire at dialysis initiation. In this study, we included all individuals with a SeMaS questionnaire. The SeMaS questionnaire collects information on self-management barriers in 10 domains: disease burden, computer skills, group functioning, self-care, locus of control, self-efficacy, social support, coping style, anxiety and depression. For these individuals, descriptive statistics of the domains were reported. Additionally, we pre-specified six factors that could be associated with these domains: sex, age, educational level, cohabitation, treatment modality (i.e., haemodialysis [HD] vs. peritoneal dialysis) and multimorbidity (Charlson Comorbidity Index [CCI]). We determined the association between these factors and the self-management barriers using a bi-serial point correlation. Results We included 1515 individuals with a SeMaS questionnaire. Median age was 68 years (IQR 57-74) and 33.3% was female. Educational level was low for 45.8% of patients and high for 23.5% of patients. Of all patients, 75.6% of patients was treated with HD and 62.0% was cohabitating with a partner. Median CCI was 3 (2-5). Most patients had moderate disease burden (64.2%), many were at least slightly willing to engage in self-care (85.1%) and the majority also felt confident in their ability for dealing with their disease (i.e., self-efficacy; 91.8%) (Fig. 1). Additionally, most patients felt at least slightly in control regarding their own health and related outcomes (i.e., locus of control; 86.6%). Just over half of all patients had good problem-solving focused coping skills (55.1%), while only a minor part had good emotion-focused coping skills (20.0%). Regarding influencing factors (Table 1), female sex was correlated with distraction-focused and emotion-focused coping (r 0.13, 95% CI 0.08; 0.19 and r 0.16, 95% CI 0.11; 0.22, respectively). Age was correlated with all domains, most strongly with computer skills (r −0.33, 95% CI −0.38; −0.28), as was educational level (r 0.39, 95% CI 0.40; 0.44). Cohabitating was clearly correlated with social support (r 0.26, 95% CI 0.20; 0.31). Both dialysis modality and CCI were associated with self-care (r 0.23, 95% CI 0.17; 0.27 and r −0.10, 95% CI −0.16; −0.05, respectively). Conclusion We identify multiple domains in which patients starting dialysis experience barriers for self-management. These barriers are associated with multiple factors, such as sex, age, educational level, cohabitation, treatment modality and multimorbidity. Knowledge of these barriers and associations are essential for healthcare providers to support patients in their disease self-management and realise successful home dialysis.
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