Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study.

Abstract

We explored the experiences of treatment strategies for steroid-sensitive nephrotic syndrome (SSNS) and care priorities among children living with the condition and their caregivers. A qualitative study using semistructured interviews. Data were analysed using reflexive thematic analysis. We coded transcripts in duplicate and developed themes that integrate key concepts across roles. Southern Alberta, Canada. A purposive sample of children aged 8-18 years, with SSNS and their caregivers from a paediatric nephrotic syndrome cohort. 28 individuals (10 children and 18 caregivers) participated in this study. All had experienced a relapse after initial diagnosis and steroid treatment. Participants identified how their experiences with SSNS treatments influenced their willingness to accept further steroids and other second-line agents. Findings are elaborated across the following four themes: (1) reluctant acceptance of steroids (<i>steroid aversion</i>, <i>lack of personalised steroid dosing</i>, <i>altered self-regulation</i> and <i>acknowledging steroid effectiveness</i>); (2) coping with unexpected relapses (<i>repeating the cycle</i>, <i>restricted life participation</i> and <i>tempered optimism</i>); (3) uncertainty about second-line therapies (<i>striving for stability, cumulative burden of adverse effects</i> and <i>exploring alternatives</i>) and (4) directing attention to unmet treatment needs and priorities (<i>mechanistic approaches to therapy</i>, <i>steroid minimisation</i>, <i>child and family involvement</i> and <i>enhanced social supports</i>). Children with SSNS and their caregivers expressed a dislike of steroids and a desire for individualised treatment protocols. Investigation into therapeutic alternatives for SSNS should integrate patients' preferences, values and care priorities.