Aims To develop a Patient Reported Experience Measure (PREM) for paediatric allergy patients and their parents. The PREM will be an essential tool to audit services to identify where they are performing well and where there is room for improvement, working through a cycle of evaluation and change. This will allow patient care and experience to be improved across the RCPCH allergy care pathways.
Methods An initial parent/carer allergy focused PREM was informed by the RCPCH Allergy Care Pathways key patient domains, and by an existing Picker Institute validated question bank. Three focus groups were conducted with (i) parents/carers of children with allergies; (ii) children aged 8–11 with allergies; and (iii) children and young people aged 12+ with allergies. These identified factors that are important to allergy patients and their parents/carers in terms of their healthcare. The questionnaire was refined using the findings from the focus groups. Two versions of the survey were then generated, one aimed at parents/carers of allergy patients aged 7 and under, and another for children aged 8 years + to complete themselves, with a section for their parents/carers. Both surveys were cognitively tested on 10 parents and children after which they were further refined and piloted.
Results Allergy-focused PREM tools were developed. Results from the focus groups, cognitive interviews and piloting can be presented. These final version covered various aspects of the patient experience across the allergy healthcare pathways, including initial recognition of the allergy, referral and first allergy tests, emergency care, (both hospital and ambulance), management of the allergy (treatments, appointments, tests and personal management plans), and lifestyle support.
Conclusion Two PREMs were developed: one for parents/carers of allergy patients under 8 years and the other for patients over 8 years and their parents/carers. It is essential that young patients and their parents/carers are consulted throughout the survey development process. Interestingly, cognitive interviewing suggested parents play a larger than expected role in the allergy care of young people. These findings should advise and inform further research on developing tools for measuring the experience of paediatric patients with chronic conditions.