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How are we measuring health-related quality of life in patients with a Barrett Esophagus? A systematic review on patient-reported outcome measurements.
van der Ende-van Loon, Mirjam C M; Stoker, A; Nieuwkerk, P T; Curvers, W L; Schoon, E J.
Afiliación
  • van der Ende-van Loon MCM; Department of Gastroenterology and Hepatology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands. mirjam.vd.ende@catharinaziekenhuis.nl.
  • Stoker A; Department of Gastroenterology and Hepatology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.
  • Nieuwkerk PT; Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands.
  • Curvers WL; Department of Gastroenterology and Hepatology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.
  • Schoon EJ; Department of Gastroenterology and Hepatology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.
Qual Life Res ; 31(6): 1639-1656, 2022 Jun.
Article en En | MEDLINE | ID: mdl-34748137
PURPOSE: Barrett esophagus (BE) is associated with a significant decrease of health-related quality of life (HRQoL). Too often, patient-reported outcome measures (PROMs) are applied without considering what they measure and for which purposes they are suitable. With this systematic review, we provide researchers and physicians with an overview of all the instruments previously used for measuring HRQoL in BE patients and which PROMs are most appropriate from the patient's perspective. METHODS: A comprehensive search was performed to identify all PROMs used for measuring HRQoL in BE patients, to identify factors influencing HRQoL according to BE patients, and to evaluate each PROM from a patients' perspective. RESULTS: Among the 27 studies, a total of 32 different HRQoL instruments were identified. None of these instruments were designed or validated for use in BE patients. Four qualitative studies were identified exploring factors influencing HRQoL in the perceptions of BE patients. These factors included fear of cancer, anxiety, trust in physician, sense of control, uncertainty, worry, burden of endoscopy, knowledge and understanding, gastrointestinal symptoms, sleeping difficulties, diet and lifestyle, use of medication, and support of family and friends. CONCLUSION: None of the quantitative studies measuring HRQoL in BE patients sufficiently reflected the perceptions of HRQoL in BE patients. Only gastrointestinal symptoms and anxiety were addressed in the majority of the studies. For the selection of PROMs, we encourage physicians and researchers measuring HRQoL to choose their PROMs from a patient perspective and not strictly based on health professionals' definitions of what is relevant.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Esófago de Barrett / Neoplasias Tipo de estudio: Prognostic_studies / Qualitative_research / Systematic_reviews Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Qual Life Res Asunto de la revista: REABILITACAO / TERAPEUTICA Año: 2022 Tipo del documento: Article País de afiliación: Países Bajos Pais de publicación: Países Bajos
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Esófago de Barrett / Neoplasias Tipo de estudio: Prognostic_studies / Qualitative_research / Systematic_reviews Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Qual Life Res Asunto de la revista: REABILITACAO / TERAPEUTICA Año: 2022 Tipo del documento: Article País de afiliación: Países Bajos Pais de publicación: Países Bajos