Patient perspectives of a young adult renal clinic: a mixed-methods evaluation

Abstract

Aim: We aimed to evaluate a young adult renal clinic (YAC) intervention that included a multidisciplinary clinic and social programme. Methods: Semi-structured interviews and surveys (Kidney Disease Quality of Life (KDQOL)-36, Time Trade-Off (TTO) and Morisky 8-Item Medication Adherence Questionnaire) were conducted with 15 patients aged 18 to 26 years with chronic kidney disease Stages 1–5, 5D and 5T before and after they attended two YACs. Results: We identified six themes: gaining confidence (encouraging self-expression, exchanging experiential knowledge, helping others, positive reflection and optimism); social connectedness; appreciating a welcoming environment; competing priorities; avoiding the sick identity; and relational boundaries. There were no significant improvements in the overall utility-based quality of life (QOL) scores (TTO: 0.72 (standard deviation (SD): 0.34) and 0.76 (SD: 0.30), P = 0.70) and the proportion of participants achieving medium to high medication adherence (n = 7, 46.7% vs n = 8, 53.3%, P = 0.72). Similar findings were observed for KDQOL domains. Conclusion: The impact of the YAC on QOL and adherence is unclear. However, patients can develop coping mechanisms and derive psychosocial benefits such as optimism. Some are conscious about respecting the privacy of others or want to disassociate themselves from the ‘disease’. Strategies to strengthen rapport, confidence and sense of ‘normality’ and to destigmatize the illness may enhance the effectiveness of a YAC.