Development of the Pediatric Quality of Life Inventory™ Eosinophilic Esophagitis module items: qualitative methods.

Abstract:

BACKGROUND:Currently there is no disease-specific outcome measure to assess the health-related quality of life (HRQOL) of pediatric patients with Eosinophilic Esophagitis (EoE). Therefore, the objective of this qualitative study was to further develop and finalize the items and support the content validity for the new Pediatric Quality of Life Inventory™ (PedsQL™) Eosinophilic Esophagitis Module. METHODS:Multiphase qualitative methodology was utilized in the development of the PedsQL™ EoE Module conceptual model. Focus interview transcripts of pediatric patients with EoE and their parents and expert review were previously used to develop the initial items and domains for the PedsQL™ EoE Module. In the current investigation, utilizing the respondent debriefing methodology, cognitive interviewing was conducted individually with pediatric patients with EoE and their parents on each newly developed item. RESULTS:Information from a total of 86 participants was obtained in combination from the previous investigation and the current study. From the previous 42 focus interviews, items were developed around the domain themes of symptoms, difficulties with eating food, treatment adherence, worry about symptoms and illness, feelings of being different than family and peers, and problems discussing EoE with others. In the current study's cognitive interviewing phase, a separate cohort of 44 participants systematically reviewed and provided feedback on each item. Items were added, modified or deleted based on this feedback. Items were finalized after this feedback from patients and parents. CONCLUSIONS:Using well-established qualitative methods, the content validity of the new PedsQL™ Eosinophilic Esophagitis Module items was supported in the current investigation. In the next iterative instrument development phase, the PedsQL™ Eosinophilic Esophagitis Module is now undergoing multisite national field testing.

journal_name

BMC Gastroenterol

journal_title

BMC gastroenterology

authors

Franciosi JP,Hommel KA,Greenberg AB,DeBrosse CW,Greenler AJ,Abonia JP,Rothenberg ME,Varni JW

doi

10.1186/1471-230X-12-135

subject

Has Abstract

pub_date

2012-09-25 00:00:00

pages

135

issn

1471-230X

pii

1471-230X-12-135

journal_volume

12

pub_type

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