Protocol for the ‘exploration of mental well-being, health-related quality of life, and psychosocial outcomes in youths on dialysis in New Zealand: A cross-sectional methods study’

Abstract

Introduction It is well accepted that young individuals on dialysis have poor clinical outcomes, although it is increasing apparent that they have similarly poor patient-centred ones. We study these latter outcomes in the population of youths undergoing dialysis in Aotearoa New Zealand (AoNZ). This study aims to report their sociodemographic and clinical characteristics, and explore their mental well-being and health-related quality of life, and how these outcomes are influenced by factors such as self-efficacy, physical activity, mood, and social anxiety. Methods A cross-sectional survey will be conducted of youths aged 15–24 years on dialysis in AoNZ with eligible youths on dialysis across AoNZ, using validated psychometric instruments to assess daily activities, mental health, quality of life, social interactions, and self-efficacy. Open-ended questions within the survey will collect qualitative data. Clinical and demographic data will be established from clinical records and linked public health databases. Analysis Quantitative data will be analyzed using descriptive statistics and structural equation modeling to explore associations between psychometric constructs, mental well-being, and quality of life. Open-ended questions will be analysed using qualitative content analysis. Ethics and Dissemination Informed consent will be sought from all participants. The research will adhere to data protection guidelines, ensuring that participants’ rights and confidentiality are protected. Results will be disseminated through academic publications, conferences, and summary reports provided to participants and stakeholders.