Co-designing a patient support portal with health professionals and men with prostate cancer: an action research study. (Preprint)

Abstract

BACKGROUND The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. OBJECTIVE To determine priority issues facing men with PCa, barriers and enablers to accessing care, format and organisation of information on a portal and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool within the portal. METHODS A qualitative action research study was conducted. Data collection comprised four online focus groups with HPs recruited from four healthcare services in Victoria (3 metropolitan, 1 regional) and seven online co-design workshops with men with PCa, recruited through the Prostate Cancer Outcomes Registry – Victoria, Prostate Cancer Foundation Australia, and the Cancer Council Victoria. We invited men’s support persons to one workshop. Men were eligible to participate if they had lived experience of PCa and access to the internet. Focus groups were analysed thematically. Workshops were analysed using descriptive-content analysis. RESULTS HPs (n=39) highlighted that men had shifting priorities over time but noted the importance of providing information to men in lay terms and in a variety of formats to assist in treatment decision-making and side effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO compactor tool received mixed support from HPs with 41% (n=16) supportive, 49% (n=19) unsure and 10% (n=4) not supportive. Men involved in workshops (n=28) ranged from 55 to 82 years of age. One workshop included five female support persons. Men identified informational needs to assist in treatment decision-making and side effect management as the top priority throughout care. Similar to HPs, support groups and practice nurses were described as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool into a portal. Men reported a preference for video and audio stories to deliver portal content. CONCLUSIONS Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. While slight variations in the perspectives of HPs and men with PCa concerning the barriers and enablers to accessing care exist, these can be addressed in a portal. Men with PCa already use online support resources and would welcome the development of a portal to centralise support information and a PRO comparator tool to prompt health-seeking behaviour. Future research should implement these findings in the development of a portal, and pilot and evaluate the portal within a population-based sample.