Person centred care provision and care planning in chronic kidney disease: which outcomes matter? A systematic review and thematic synthesis of qualitative studies

Rationale & Objective Explore priorities related to outcomes and barriers of adults with chronic kidney disease (CKD) regarding person centred care and care planning. Study design Systematic review of qualitative studies. Search Strategy & Sources In July 2018 six bibliographic databases, and reference lists of included articles were searched for qualitative studies that included adults with CKD stages 1–5, not on dialysis or conservative management, without a previous kidney transplantation. Analytical Approach Three independent reviewers extracted and inductively coded data using thematic synthesis. Reporting quality was assessed using the COREQ and the review reported according to PRISMA and ENTREQ statements. Results Forty-six studies involving 1493 participants were eligible. The period after diagnosis of CKD is characterized by feelings of uncertainty, social isolation, financial burden, resentment and fear of the unknown. Patients show interest in ways to return to normality and remain in control of their health in order to avoid further deterioration of kidney function. However, necessary information is often unavailable or incomprehensible. Although patients and healthcare professionals share the predominant interest of whether or not dialysis or transplantation is necessary, patients value many more outcomes that are often unrecognized by their healthcare professionals. We identified 4 themes with 6 subthemes that summarize these findings: ‘pursuing normality and control’ (‘pursuing normality’; ‘a search for knowledge’); ‘prioritizing outcomes’ (‘reaching kidney failure’; ‘experienced health’; ‘social life’; ‘work and economic productivity’); ‘predicting the future’; and ‘realising what matters’. Reporting quality was moderate for most included studies. Limitations Exclusion of non-English articles. Conclusions The realisation that patients’ priorities do not match those of the healthcare professionals, in combination with the prognostic ambiguity, confirms fatalistic perceptions of not being in control when living with CKD. These insights may contribute to greater understanding of patients’ perspectives and a more person-centred approach in healthcare prioritization and care planning within CKD care.