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New patient-reported experience measure for children with allergic disease: development, validation and results from
C Gore1, R Griffin2, T Rothenberg3
1Department of Academic Paediatric Allergy, Imperial College, London, UK Department of Paediatric Allergy, Imperial College Healthcare NHS Trust, London, UK.
Insights
New patient-reported experience measures (PREMs) were developed for children and parents to assess allergy care. Findings highlight areas for improvement, particularly in primary and emergency settings, emphasizing better communication for enhanced allergy care.
Area of Science:
- Pediatric Allergy and Immunology
- Patient Experience Research
- Healthcare Quality Improvement
Background:
- Assessing patient experience is crucial for improving healthcare delivery, especially in specialized fields like pediatric allergy care.
- Existing measures may not adequately capture the unique experiences of children and their parents within the allergy care pathway.
- Integrated care settings require tailored tools to evaluate patient-reported outcomes effectively.
Purpose of the Study:
- To develop and validate novel allergy-specific patient-reported experience measures (PREMs) for children and their parents.
- To gather feedback on the patient experience within an integrated pediatric allergy care system.
- To identify key areas for enhancing the quality of allergy care provided to pediatric patients.
Main Methods:
- Two distinct allergy-specific PREMs, 'Your Allergy Care' (children 8-16 years) and 'Your Child's Allergy Care' (parents of children 0-7 years), were developed.
- Development involved focus groups, cognitive testing, and two prospective validation studies.
- Data were collected from 687 children with allergic conditions and their parents/carers across various care settings.
Main Results:
- Validated PREMs were established, with 503 questionnaires completed for final analysis.
- While overall communication and competence were rated positively, significant areas for improvement were identified, including communication with schools/nurseries and information provision on allergen avoidance.
- A notable finding was that 62% of patients required multiple visits before diagnosis, and allergy care in primary/emergency settings yielded worse experiences compared to specialist clinics.
Conclusions:
- The newly developed PREMs provide a robust method for reporting allergy-specific patient experiences in children and parents.
- These tools will aid in identifying and prioritizing areas for improvement in allergy care services and commissioning.
- Future efforts to improve allergy care should focus on primary and emergency settings, with a strong emphasis on enhancing communication between healthcare providers and the community.
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 aged 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/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.
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