Objectives: To develop and validate a new allergy-specific Patient-Reported Experience Measure (PREM) for children and their parents, and to collect feedback in an integrated care setting.Design: Two allergy-specific PREMs were produced using focus-groups, cognitive testing, two prospective validation-studies (collaboration: Royal College of Paediatrics and Child Health, Picker Institute Europe, Imperial College/London): "Your Allergy Care", for children age 8-16 years; "Your Child's Allergy Care", for parents of children aged 0-7 years.Setting: Community event, primary/secondary/tertiary allergy care-settings.
Main outcome measures:Performance of PREMs in validation-study; reported experience of allergy care.
Participants: 687 children with allergic conditions and their parents/carersResults: In total 687 questionnaires were completed; 503/687 (253 child; 250 parent) for the final survey. In both surveys demographic variations were not associated with differences in results.Although 71% reported ≥1 allergic condition (food allergy/eczema/hayfever/asthma), 62% of patients required multiple visits before receiving final diagnosis. Overall, patient experience was good for communication with patient/parent, competence, confidence in ability and 73% felt looked after "very well", 23% "quite well". Areas for improvement included communication with nurseries/schools, more information on side-effects, allergic conditions, allergen/irritant-avoidance. Allergy care in primary/emergency caresettings was associated with higher problem-scores (worse experience) than in specialist clinics. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 Allergic conditions affect up to a third of children in the United Kingdom at some point during childhood making them the most common chronic childhood ailment(1). Many children suffer from multiple allergic co-morbidities, such as eczema, asthma, food allergies and hayfever. Access to specialist allergy care is difficult due to under-provision of services, as outlined in successive national reports(2-5). Once accessed, there is evidence of considerable variability in the quality of allergy care, which is likely to negatively impact on clinical outcomes, patients' experiences and safety(6, 7).In response, the Department of Health commissioned the Royal College of Paediatrics and Child Health (RCPCH) to define care-pathways for children with allergic conditions, including the development of allergy-specific Patient Reported Experience Measures (PREMs)(8).PREMs allow patients to report on their experience of care rather than health outcomes (Patient Reported Outcome Measures, PROMs, e.g. ...
