Patient and Public Involvement: Gathering Patient and Carer Insights to Inform Future Research into Permanent Radiation-Induced Alopecia (pRIA)

Abstract

Objectives

Radiation-induced alopecia has significant psychological sequelae. We aimed to understand aspects of pRIA important to patients and carers to inform future research.

Methods

A multidisciplinary team including clinical oncology, dermatology, paediatric nursing, youth cancer support, and PPI specialists was established. Separate face-to-face focus groups were conducted for (1) parents/guardians of children aged 0-16 years and (2) teenagers and young adults aged 16-30 years, currently receiving cranial proton therapy and at risk of pRIA. All potential participants were approached by telephone or in-person and provided with an age-appropriate participant information sheet. Discussions explored three hair loss topics: perception and impact; support; future research.

Results

Seven participants were invited to each group. Two declined and three were unable to attend due to travel constraints, resulting in six participants in Group 1 and three participants in Group 2.

All participants in both groups highlighted the importance of individualised risk assessment and recommended information on supportive care (wigs, caps) be consolidated and communicated via a pictorial leaflet or short videos. They also preferred virtual follow up for research and were willing to complete questionnaires and provide regular photographs to monitor interventions.

Parents/guardians expressed concerns about children undergoing punch biopsy or receiving unlicensed or investigational treatments (oral, topical, hair transplant). Parents/guardians do not want to travel significant distances for dermatology or research appointments.

In contrast, teenagers and young adults favoured pro-active involvement in research including scalp-cooling pre-treatment each day, use of unlicensed or investigational treatments to improve pRIA (preference for oral instead of topical) and would accept associated minimal side effects.

Conclusion

PPI provided valuable insight into acceptability and relevance of pRIA research. Clear differences in opinions between patient groups were identified that should be considered when designing future research.