Adapting the Australian Hospital Patient Experience Question Set (AHPEQS-Parent) for anal dilatation care.

BACKGROUND: Patient-reported experience measures (PREMs) are essential for evaluating healthcare quality from the family perspective, yet validated instruments for specific paediatric procedures are limited. Parents performing anal dilatations following anorectal malformation repair experience unique challenges that general measures may not adequately capture. PURPOSE: To adapt the Australian Hospital Patient Experience Question Set for Parents for measuring parental experience during anal dilatation protocols through stakeholder driven methodology. METHODS: This methodological study employed a four-stage sequential approach at a tertiary paediatric hospital. Parents who completed anal dilatation protocols participated in cognitive interviews to evaluate the adapted questionnaire's comprehensibility and appropriateness. Following analysis of feedback, methodological modifications were identified and tested through a second pilot round where parents completed a survey and follow-up interviews. Content analysis identified themes related to questionnaire acceptability and temporal measurement concerns. RESULTS: All parents (n = 8) demonstrated comprehension of the adapted questions and confirmed response options were appropriate. However, four parents (50%) independently identified that single timepoint measurement inadequately captured their experience, distinguishing between hospital teaching and home implementation phases. This parent driven insight led to development of a two timepoint within survey methodology. Subsequent pilot testing confirmed 100% acceptability of the revised approach, with all parents (n = 4) confirming it appropriately captured their distinct experiences across care phases. CONCLUSIONS: Authentic parental engagement drove fundamental methodological innovation in adapting the AHPEQS-Parent for anal dilatation protocols. The resulting two timepoint measurement approach provides a parent-informed tool that may have broader applications for measuring care transitions in other paediatric populations requiring complex home-based medical procedures.