{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T18:20:25Z","timestamp":1787509225582,"version":"build-2736575974"},"reference-count":24,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2011,6,15]],"date-time":"2011-06-15T00:00:00Z","timestamp":1308096000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Child"],"published-print":{"date-parts":[[2012,7]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>\n                    <jats:bold>Background and aims\u2003<\/jats:bold>\n                    Current research outcomes in paediatric eosinophilic oesophagitis (EoE) are directed towards histological improvement with no attention to health\u2010related quality of life (HRQOL). The primary objective of this study was to identify key patient\u2010reported and parent proxy outcome elements of EoE disease\u2010specific HRQOL.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:bold>Methods\u2003<\/jats:bold>\n                    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\u2122 methodology and the consolidated criteria for reporting qualitative research. A semi\u2010structured interview guide of open\u2010ended questions was developed, and extensive review of audio\u2010taped transcripts was performed.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:bold>Results\u2003<\/jats:bold>\n                    A total of 42 focus interviews were conducted. Child self\u2010reports were obtained for patients in the 5\u20137, 8\u201312 and 13\u201318 years of age groups, and parent proxy reports were obtained in the 2\u20134, 5\u20137, 8\u201312 and 13\u201318 years of age groups. We discovered that patients and parents often had different concerns, illustrating unique aspects of EoE\u2010specific 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.\n                  <\/jats:p>\n                  <jats:p>\n                    <jats:bold>Conclusion\u2003<\/jats:bold>\n                    Paediatric EoE patient and parent proxy interviews revealed many EoE\u2010specific aspects of HRQOL that are not captured in generic HRQOL instruments. Outcome measures that reflect patient\u2010 and parent proxy\u2010reported HRQOL are a critical need in paediatric EoE.\n                  <\/jats:p>","DOI":"10.1111\/j.1365-2214.2011.01265.x","type":"journal-article","created":{"date-parts":[[2011,6,15]],"date-time":"2011-06-15T05:44:34Z","timestamp":1308116674000},"page":"477-483","source":"Crossref","is-referenced-by-count":69,"title":["Quality of life in paediatric eosinophilic oesophagitis: what is important to patients?"],"prefix":"10.1111","volume":"38","author":[{"given":"J. P.","family":"Franciosi","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K. A.","family":"Hommel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C. W.","family":"DeBrosse","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A. B.","family":"Greenberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A. J.","family":"Greenler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. P.","family":"Abonia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. E.","family":"Rothenberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. W.","family":"Varni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2011,6,15]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-8-14"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2007.08.017"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.ajkd.2007.09.021"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00467-009-1174-1"},{"key":"e_1_2_7_6_1","first-page":"981","article-title":"The Preamble of the Constitution of the World Health Organization","volume":"80","author":"Grad F. P.","year":"2002","journal-title":"Bulletin of the World Health Organization"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2009.11.008"},{"key":"e_1_2_7_8_1","volume-title":"Focus Groups: A Practical Guide for Applied Research","author":"Kruger R. 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