Person-centred care in chronic kidney disease: a cross-sectional study of patients’ desires for self-management support

BACKGROUND: People with chronic kidney disease (CKD) must self-manage their illness to assist with slowing disease-progression, but this is a complex task requiring support from healthcare professionals. Despite the established importance of person-centred care, people with CKD are rarely consulted regarding their desires for self-management support (SMS). METHODS: A cross-sectional survey was conducted face-to-face in a Queensland primary care clinic and distributed Australia-wide via an online interface promoted by Kidney Health Australia during 2015. Participants were ≥18 years old and had a self-reported doctor’s diagnosis of CKD (any stage; N = 97). The survey was based upon existent literature which identified 10 areas that those with CKD believe require additional support. Descriptive data were generated and Mann-Whitney U tests were performed to compare the desires of different groups of participants. RESULTS: Of the 97 participants, 36 completed a hardcopy survey in clinic, and 61 completed the online version. Just over half (60.8%) were female, age ranged from 16–89 (M = 56.44), and time since diagnosis ranged from just diagnosed to 60 years (Mdn = 8.08 years). Strong interest in receiving additional support across all 10 areas was reported (Mdns = 8.00–10.00), with “keeping a positive attitude and taking care of mental and physical health” receiving the highest rating. Those who were: younger (p < .001); more highly educated (p < .001); working (p < .001); diagnosed longer ago (p = .015); and women (p = .050) expressed stronger overall desire for additional support. CONCLUSIONS: In addition to information about CKD and medications, everyday strategies ought to be prioritised in patient education. Varying levels of engagement and eagerness to learn more about self-management highlight the need for a person-centred approach to SMS. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12882-016-0416-2) contains supplementary material, which is available to authorized users.