Quality of life in paediatric eosinophilic oesophagitis: what is important to patients?

Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229-3039, USA.
Child Care Health and Development (Impact Factor: 1.83). 06/2011; 38(4):477-83. DOI: 10.1111/j.1365-2214.2011.01265.x
Source: PubMed

ABSTRACT Current research outcomes in paediatric eosinophilic oesophagitis (EoE) are directed towards histological improvement with no attention to health-related quality of life (HRQOL). The primary objective of this study was to identify key patient-reported and parent proxy outcome elements of EoE disease-specific HRQOL.
The research team comprised clinical allergists and gastroenterologists with expertise in paediatric EoE as well as two PhD psychologists with extensive experience in qualitative research. Focused interview techniques were adapted from the Pediatric Quality of Life Inventory 4.0™ methodology and the consolidated criteria for reporting qualitative research. A semi-structured interview guide of open-ended questions was developed, and extensive review of audio-taped transcripts was performed.
A total of 42 focus interviews were conducted. Child self-reports were obtained for patients in the 5-7, 8-12 and 13-18 years of age groups, and parent proxy reports were obtained in the 2-4, 5-7, 8-12 and 13-18 years of age groups. We discovered that patients and parents often had different concerns, illustrating unique aspects of EoE-specific HRQOL that were not captured in generic HRQOL instruments. Specific themes that emerged from these interviews included, but are not limited to: feelings of being different than family and peers, diet and medication adherence, difficulties with eating food and worry about symptoms and illness.
Paediatric EoE patient and parent proxy interviews revealed many EoE-specific aspects of HRQOL that are not captured in generic HRQOL instruments. Outcome measures that reflect patient- and parent proxy-reported HRQOL are a critical need in paediatric EoE.

  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Although there is an increasing number of eosinophilic gastrointestinal disorders (EGID) cases including eosinophilic esophagitis (EoE) and eosinophilic gastroenteritis (EGE), being reported globally, no systematic reviews have been conducted to elucidate the racial differences in these disorders. We aimed to show the racial differences, especially among Caucasians and Asians, in the risk of EoE and EGE.
    Allergology International 03/2015; 113. DOI:10.1016/j.alit.2015.02.003
  • Source
    [Show abstract] [Hide abstract]
    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.
    BMC Gastroenterology 09/2012; 12(1):135. DOI:10.1186/1471-230X-12-135 · 2.11 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Eosinophilic esophagitis (EoE) is a clinicopathologic, chronic esophageal inflammatory disease resistant to acid suppressive therapy and is associated with variable symptoms indicative of upper gastrointestinal dysfunction. Per current guidelines established by The International Group of Eosinophil Researchers (TIGERS), the diagnosis is made in symptomatic patients after a biopsy that confirms a peak eosinophil level of ≥15 eosinophils/high-powered field (HPF). The esophagus is distinguished by pronounced tissue eosinophilia in which dietary antigens are key inciting factors for disease pathogenesis; EoE being reversed by elimination of triggering food allergens suggests that the disease is mediated in part by allergic sensitization to foods. Moreover, experimental EoE in mice can be induced not only via food exposure but also via aeroallergen exposure. Consistent with an allergic etiology rather than an acid-induced esophagitis, swallowed glucocorticoids are effective for the treatment of EoE. Evaluation by an allergist is a recommended part of the diagnostic workup, especially for management of allergic comorbidities. Clinical practice for the evaluation of patients with EoE mainly relies on prick skin tests due to the ease and validation of these tests in the context of immediate hypersensitivity. However, both atopy patch testing and serum IgE testing have been used in EoE. Herein, we reviewed the basic clinical features of EoE with a focus on the approach to diagnosing causative food allergens and to dietary therapy.
    07/2013; 1(4):332–340. DOI:10.1016/j.jaip.2013.05.009