ePROMs are Best Used Alongside 'A High-Quality Conversation' as Part of a Therapeutic Relationship. A Qualitative Study of Children with Life-Altering Skin Conditions.

purposeThe benefits and barriers of using patient-reported outcome measures (PROMs) in routine clinical practice have been examined extensively, but there has been limited in-depth exploration of the experience of PROMs by stakeholders and consumers. This study sought to understand the experiences of children with life-altering skin conditions, their caregivers and treating health professionals regarding the routine use of electronic PROMs.

methodsUsing interpretive description, data were gathered through qualitative interviews and researcher observations in two outpatient clinics within a major metropolitan paediatric hospital. In total, 48 interviews were conducted with children (aged 11-16 years) attending burn scar or vascular anomalies clinics, their caregivers (children of all ages) and treating health professionals.

resultsThe therapeutic relationship was a central organising concept and crucial for providing person-centred care. Within the therapeutic relationship, ePROMs were used to prioritise where to start alongside a high-quality conversation. Study themes identified were shaping (or not shaping) care, taking a considered approach to the use of ePROMs, and aligning values and priorities with the everyday reality. ePROMs did not shape care or capture the priorities of all children and caregivers. A spectrum of sentiment from negative to positive was expressed by families regarding the routine use of ePROMs, differing to the predominantly positive sentiment by health professionals.

conclusionsePROMs should be used alongside high-quality conversations to assist in eliciting, understanding and evaluating what matters to children and caregivers but must be used within a therapeutic relationship.