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: 1.69). 06/2011; 38(4):477-83. DOI: 10.1111/j.1365-2214.2011.01265.x
Source: PubMed


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.

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    • "Items that emerged from the individual focus interviews were integrated into an initial draft of the PedsQL™ EoE Module [4]. Local (authors) and national (listed in acknowledgements) EoE experts in the fields of Allergy, Gastroenterology, and Psychology then reviewed this draft. "
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    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.
    Full-text · Article · Sep 2012 · BMC Gastroenterology
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    ABSTRACT: To characterize caregiver stress (CS) in parents of children with Eosinophilic Gastrointestinal Disorders (EGIDs) and understand relationships with psychological functioning and child behavior. Caregivers with a child (0-17 years) with EGID completed questionnaires for demographics, EGID severity, treatments, CS, psychological distress, self-efficacy, and child behaviors. A total of 163 caregivers (98% mother, 94% Caucasian) participated. CS correlated with psychological distress, income, child behavioral problems, treatments, and disease severity. Children were rated higher than age-specific norms for emotional difficulties. Behavioral difficulties associated with gender, age, EGID severity, and duration. Parent psychological distress was most strongly associated with CS. Parental self-efficacy, dietary treatments, and child emotional difficulties were also related to stress. Mothers reported stress and psychological distress from caring for a child with EGID. The relationship between these variables suggests these parents may benefit from supportive psychotherapy interventions. Evaluation of parental self-efficacy and child behavior is also warranted.
    Full-text · Article · Jan 2012 · Journal of Pediatric Psychology
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    ABSTRACT: Eosinophilic esophagitis is a chronic, immune-mediated inflammatory disorder that responds to dietary therapy; however, data evaluating the effectiveness of dietary therapeutic strategies are limited. This study compared the effectiveness of 3 frequently prescribed dietary therapies (elemental, 6-food elimination, and skin prick and atopy patch-directed elimination diets) and assessed the remission predictability of skin tests and their utility in directing dietary planning. A retrospective cohort of proton-pump inhibitor-unresponsive, non-glucocorticoid-treated patients with eosinophilic esophagitis who had 2 consecutive endoscopic biopsy specimens associated with dietary intervention was identified. Biopsy histology and remissions (<15 eosinophils/high-power field) after dietary therapy and food reintroductions were evaluated. Ninety-eight of 513 patients met the eligibility criteria. Of these 98 patients, 50% (n= 49), 27% (n= 26), and 23% (n= 23) received elemental, 6-food elimination, and directed diets, respectively. Remission occurred in 96%, 81%, and 65% of patients on elemental, 6-food elimination, and directed diets, respectively. The odds of postdiet remission versus nonremission were 5.6-fold higher (P= .05) on elemental versus 6-food elimination diets and 12.5-fold higher (P= .003) on elemental versus directed diets and were not significantly different (P= .22) on 6-food elimination versus directed diets. After 116 single-food reintroductions, the negative predictive value of skin testing for remission was 40% to 67% (milk, 40%; egg, 56%; soy, 64%; and wheat, 67%). All 3 dietary therapies are effective; however, an elemental diet is superior at inducing histologic remission compared with 6-food elimination and skin test-directed diets. Notably, an empiric 6-food elimination diet is as effective as a skin test-directed diet. The negative predictive values of foods most commonly reintroduced in single-food challenges are not sufficient to support the development of dietary advancement plans solely based on skin test results.
    Full-text · Article · Apr 2012 · The Journal of allergy and clinical immunology
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