title: New patient-reported experience measure for children with allergic disease: development, validation and results from integrated care.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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 aged 8-16 years; 'Your Child's Allergy Care', for parents of children aged 0-7 years.
  
  
  METHODS
  Community event, primary/secondary/tertiary allergy care settings.
  
  
  METHODS
  Performance of PREMs in validation study; reported experience of allergy care.
  
  
  METHODS
  687 children with allergic conditions and their parents/carers.
  
  
  RESULTS
  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% of patients reported one or more allergic conditions (food allergy/eczema/hay fever/asthma), 62% required multiple visits before receiving final diagnosis. Overall, patient experience was good for communication with patient/parent, competence and confidence in ability, and 73% felt looked after 'very well' and 23% 'quite well'. Areas for improvement included communication with nurseries/schools, more information on side effects, allergic conditions and allergen/irritant avoidance. Allergy care in primary/emergency care settings was associated with higher problem-scores (worse experience) than in specialist clinics.
  
  
  CONCLUSIONS
  These new PREMs will allow allergy-specific patient experience reporting for children and parents and help identification of priority areas for improvement and commissioning of care. Efforts towards better allergy care provision must be targeted at primary and emergency care settings and underpinned by improving communication between healthcare providers and the community.
authors.affiliation: Department of Academic Paediatric Allergy, Imperial College, London, UK Department of Paediatric Allergy, Imperial College Healthcare NHS Trust, London, UK.
authors.forename: C
authors.initials: C
authors.lastname: Gore
authors.affiliation: Department of Academic Paediatric Allergy, Imperial College, London, UK.
authors.forename: R
authors.initials: R
authors.lastname: Griffin
authors.affiliation: Department of Paediatrics, Homerton University Hospital NHS Foundation Trust, London, UK.
authors.forename: T
authors.initials: T
authors.lastname: Rothenberg
authors.affiliation: Picker Institute Europe, Oxford, UK.
authors.forename: A
authors.initials: A
authors.lastname: Tallett
authors.affiliation: Picker Institute Europe, Oxford, UK.
authors.forename: B
authors.initials: B
authors.lastname: Hopwood
authors.affiliation: Picker Institute Europe, Oxford, UK.
authors.forename: S
authors.initials: S
authors.lastname: Sizmur
authors.affiliation: Department of Paediatric Allergy, Imperial College Healthcare NHS Trust, London, UK.
authors.forename: C
authors.initials: C
authors.lastname: O'Keeffe
authors.affiliation: Department of Academic Paediatric Allergy, Imperial College, London, UK.
authors.forename: J O
authors.initials: JO
authors.lastname: Warner
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D019033:Delivery of Health Care, Integrated; D005260:Female; D017144:Focus Groups; D006801:Humans; D006967:Hypersensitivity / Q000175:diagnosis / Q000628:therapy*; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010290:Parents / Q000523:psychology; D010865:Pilot Projects; D057566:Self Report; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Allergy; Children's Rights; Health Service; Patient perspective; Qualitative research