Barriers and benefits to the routine use of electronic patient-reported outcome measures in treating children with lifealtering skin conditions

Abstract

Aims: To advance understanding of the barriers and benefits to the use of electronic patient-reported outcome measures (ePROMs) in the routine treatment of children with life-altering skin conditions, from multiple stakeholder perspectives. Methods: Stakeholder groups were children with life-altering conditions (burn scars, infantile hemangiomas and dermatological conditions), receiving treatment at three outpatient clinics at a major metropolitan children's hospital in Australia; their caregivers and treating clinicians. Data were collected using semi-structured interviews and field notes before and during a pragmatic pilot randomized controlled trial of the implementation of ePROMs of health-related quality of life (HRQoL). Qualtrics was used to administer the ePROMs. Barriers and benefits to the routine completion of ePROMS were mapped to the Consolidated Framework for Implementation Research pre- A nd post-implementation, for each stakeholder group and clinic. Results: Thirty interviews have been completed (14 children and caregivers, 16 clinicians) and field notes have involved 51 child and caregiver participants. Barriers at a clinic level included: Safety and privacy concerns in two busy clinics; completing measures for initial consultations where natural communication was identified as a higher priority in one clinic; and a lack of capacity of the health care team to respond to some issues identified. Barriers to the completion of ePROMs included: A lack of appropriate technology at families' homes; the need for assistance; and inability to prioritize ePROM completion due to the competing burden of caring for family members during COVID-19. Benefits included: Being asked about topics that were important to families but not typically raised in consultations (i.e., financial impact of the condition, sleep); the perception of HRQoL as a relatively 'safe' topic; and the high value placed on ePROMs by caregivers who felt they would not typically feel comfortable raising the issues identified. Mapping of the barriers and benefits to the Consolidated Framework for Implementation Research covers leadership engagement and organizational culture which will be discussed. Conclusion: Diverse methods are needed to overcome barriers and build on benefits to capture information on HRQoL routinely prior to consultations. This includes telephone and face-to-face assisted e-PROM completion, and paper and electronic methods of administering patient-reported outcome measures.L6344121392021-03-15 <br />