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Open Access Research article

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

James P Franciosi1*, Kevin A Hommel2, Allison B Greenberg3, Charles W DeBrosse4, Alexandria J Greenler4, J Pablo Abonia4, Marc E Rothenberg4 and James W Varni5

Author Affiliations

1 Division of Gastroenterology, Hepatology and Nutrition, Nemours Children’s Hospital, 13535 Nemours Parkway, Orlando, FL 32827, USA

2 Center for the Promotion of Treatment Adherence and Self-Management, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

3 Clinical Trials Office, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

4 Division of Allergy and Immunology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

5 Department of Pediatrics, College of Medicine, Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, TX, USA

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BMC Gastroenterology 2012, 12:135  doi:10.1186/1471-230X-12-135

Published: 25 September 2012

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.

Keywords:
Quality of life; Eosinophilic Esophagitis; Children; PedsQL™; Pediatrics