Literature DB >> 27484970

New patient-reported experience measure for children with allergic disease: development, validation and results from integrated care.

C Gore1, R Griffin2, T Rothenberg3, A Tallett4, B Hopwood4, S Sizmur4, C O'Keeffe5, J O Warner2.   

Abstract

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. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Entities:  

Keywords:  Allergy; Children's Rights; Health Service; Patient perspective; Qualitative research

Mesh:

Year:  2016        PMID: 27484970     DOI: 10.1136/archdischild-2015-309598

Source DB:  PubMed          Journal:  Arch Dis Child        ISSN: 0003-9888            Impact factor:   3.791


  5 in total

1.  Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.

Authors:  Malcolm McNeill; Samantha Noyek; Eshetu Engeda; Nora Fayed
Journal:  Qual Life Res       Date:  2020-11-06       Impact factor: 4.147

Review 2.  Asthma/Rhinitis (The United Airway) and Allergy: Chicken or Egg; Which Comes First?

Authors:  John O Warner
Journal:  J Clin Med       Date:  2020-05-14       Impact factor: 4.241

3.  How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross-sectional study.

Authors:  Anna Nordlind; Ann-Sofie Sundqvist; Agneta Anderzén-Carlsson; Ann-Charlotte Almblad; Karin Ängeby
Journal:  Health Expect       Date:  2021-12-02       Impact factor: 3.377

4.  Factors associated with parental burden among parents of children with food allergies in China: a cross-sectional study.

Authors:  Zeen Li; Lang Tian; Haiyan Liu; Siyuan Tang; Qirong Chen
Journal:  BMJ Open       Date:  2022-09-23       Impact factor: 3.006

5.  Patient-reported experience measure in sickle cell disease.

Authors:  Subarna Chakravorty; Amy Tallett; Cara Witwicki; Harriet Hay; Catherine Mkandawire; Avanelle Ogundipe; Patrick Ojeer; Antonia Whitaker; Jessica Thompson; Stephen Sizmur; Ganesh Sathyamoorthy; John O Warner
Journal:  Arch Dis Child       Date:  2018-08-04       Impact factor: 3.791

  5 in total

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