Background Psychosocial factors are known to influence access to kidney transplantation in children with stage 5 Chronic Kidney Disease (CKD) but these factors are poorly understood. An exploratory Mixed Methods (MM) study was designed to prospectively investigate these psychosocial factors by interviewing and distributing questionnaires to participants. Here we describe the process of converting the qualitative interview data for utilisation in the quantitative questionnaire phase of the MM study, with patient and public involvement (PPI).

Methods Up to 37 semi-structured interviews took place with children with CKD, their carers and their renal multi-disciplinary team. The interviews were analysed by thematic analysis as per Braun and Clarke to generate preliminary themes. An initial list of existing and validated questionnaires compiled from a systematic literature review and expert recommendations, were mapped against the preliminary themes. The questionnaires were checked for internal consistency and test re-test reliability scores. Over email correspondences and video conference calls, the questionnaires were co-reviewed for their readability, relevance and acceptability with a steering group of patients and families with lived expertise of CKD, dialysis and transplantation.

Results An initial list of 18 questionnaires were mapped against them. After steering group reviews, 8 questionnaires were removed due to their unsuitable language, onerous length, limited validated age range and irrelevance to families with CKD. Cronbach’s alpha scores of all questionnaires picked for the final distribution list ranged up to or exceeded 0.8. The final list of questionnaires successfully received ethical approval and were distributed in the next phase of the MM study.

Conclusions Distributing questionnaires that are relevant and acceptable to families with CKD is important. It not only encourages retention but ensures that the research is meaningful to the families. We described the process of engaging the voices of families with lived expertise of CKD to meet this endeavour.

Acknowledgements for funding or support This work is funded by the NIHR Academy. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.