ABSTRACT
BACKGROUND AND AIMS: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Subject(s)
Attitude to Health , Eosinophilic Esophagitis/rehabilitation , Quality of Life , Activities of Daily Living , Adolescent , Child , Child, Preschool , Communication , Eosinophilic Esophagitis/physiopathology , Eosinophilic Esophagitis/psychology , Eosinophilic Esophagitis/therapy , Feeding Behavior , Female , Humans , Interpersonal Relations , Male , Ohio , Psychometrics , Schools , Treatment OutcomeABSTRACT
Cochlear implants are being applied to an ever widening patient population, including children in whom lifetime use of these devices is anticipated. Replacement of implants can be expected for reasons of device failure as well as future upgrading. This investigation was undertaken to examine the effect of cochlear electrode explanation and reimplantation on spiral ganglion cell survival. Guinea pigs with normal ears were initially implanted and either explanted or explanted and reimplanted (at 2 months) with a single wire ball-tip intracochlear electrode or a silastic carrier (each remaining for an additional 2 months). Little loss of hair cells or auditory nerve was observed across experimental groups and normal controls. Restricted basal turn cochlear and spiral ganglion cell loss was observed in a few animals in each group and was likely associated with mechanical damage from initial implantation. Likewise the scattered organ of Corti damage and hair cell loss observed was noted in only a few cochleae in each experimental group. Therefore, no significant differences in the average pathology across experimental groups and controls were observed. Thus, explantation or explantation with subsequent reimplantation does not appear to constitute an additional significant pathological risk compared to implantation alone.
