Health-related quality of life and patient-reported outcome measures in NASH-related cirrhosis
| العنوان: | Health-related quality of life and patient-reported outcome measures in NASH-related cirrhosis |
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| المؤلفون: | Yemi Oluboyede, Gulnar Fattakhova, Lorraine McSweeney, Luke Vale, Lynda C. Doward, Fiona Beyer, Clifford A. Brass, Quentin M. Anstee, Matthew Breckons, Laura Ternent, Maria-Magdalena Balp, Arun J. Sanyal |
| المصدر: | JHEP Reports JHEP Reports, Vol 2, Iss 3, Pp-(2020) |
| بيانات النشر: | Elsevier BV, 2020. |
| سنة النشر: | 2020 |
| مصطلحات موضوعية: | medicine.medical_treatment, Disease, Liver disease, 0302 clinical medicine, Immunology and Allergy, 030212 general & internal medicine, Non-alcoholic steatohepatitis, education.field_of_study, Gastroenterology, PRO, patient-reported outcome, LDSI, liver disease symptom index, 3. Good health, health-related quality of life, Cirrhosis, 030211 gastroenterology & hepatology, Patient-reported outcome, SF-36, short form health profile 36, Research Article, FDA, United States Food and Drug Administration, RI, researcher interpretation, HRQoL, health-related quality of life, NAFLD, non-alcoholic fatty liver disease, medicine.medical_specialty, SF-36, NASH, non-alcoholic steatohepatitis, Population, liver, digestive system, Support group, MS, multiple sclerosis, 03 medical and health sciences, Quality of life (healthcare), NAFLD, PHAQ, patient-reported outcome measurement information system health assessment questionnaire, Internal Medicine, medicine, NAFL, non-alcoholic fatty liver, CLDQ, chronic liver disease questionnaire, lcsh:RC799-869, Intensive care medicine, education, patient-reported outcome measures, Hepatology, business.industry, nutritional and metabolic diseases, medicine.disease, QoL, quality of life, Mental health, digestive system diseases, FIS, fatigue impact scale, PROM, patient-reported outcome measure, EMA, European Medicines Agency, COSMIN, The COnsensus-based Standards for the selection of health Measurement INstruments, lcsh:Diseases of the digestive system. Gastroenterology, business, LDQoL, liver disease quality of life questionnaire |
| الوصف: | Background & Aims Non-alcoholic steatohepatitis (NASH) is known to have a negative impact on patients' health-related quality of life (HRQoL), even before progression to cirrhosis has occurred. The burden of NASH-related cirrhosis from the patient perspective remains poorly understood. Herein, we aimed to identify the burden of disease and HRQoL impairment among patients with NASH-related compensated cirrhosis. Methods This targeted literature review sought first to identify the humanistic burden of disease from the perspective of patients with diagnosed NASH-cirrhosis and, secondly, to identify generic or disease-specific patient-reported outcome measures (PROMs) used to assess the impact of NASH-cirrhosis. Searches were conducted in bibliographical databases, grey or unpublished literature, liver disease websites, support group websites and online blogs. A quality assessment of specific PROMs was conducted. Results Patients with NASH-cirrhosis are reported to suffer from lower HRQoL than patients with non-cirrhotic NASH and the general population with respect to physical health/functioning, emotional health and worry, and mental health. Thirteen PROMs were identified, of which 4 were liver-disease specific: CLDQ, CLDQ-NAFLD, LDQoL and LDSI. The most commonly used measures do not comply with current industry or regulatory standards for PROMs and/or are not validated for use in a cirrhotic NASH population. Conclusions Patients with NASH-cirrhosis have lower HRQoL and poorer physical health than patients with non-cirrhotic NASH. However, the literature lacked detail of the everyday impact on patients' lives. Currently, a number of PROMs are available to measure the impact of the disease in patients with chronic liver conditions. The lack of studies that include qualitative insights in this population mandates further exploration and research. Lay summary It is not well understood how having non-alcoholic fatty liver disease (NAFLD)-related cirrhosis affects a person's everyday wellbeing and quality of life. Some research has been done with patients who have early stages of liver disease but not people with cirrhosis. We found that patients with NAFLD-related cirrhosis tended to have poorer health than patients without cirrhosis. But there was not very much information from patients themselves and there were no tools or questionnaires just for this group of patients. Graphical abstract Highlights • The burden of cirrhotic NASH from the patient perspective remains poorly understood. • Patients with NASH-related compensated cirrhosis are reported to suffer from lower HRQoL. • Most commonly used PROMs are not validated for use in a cirrhotic NASH population. |
| تدمد: | 2589-5559 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ee751f2b6ffd99b10142118b951f0fcdTest https://doi.org/10.1016/j.jhepr.2020.100099Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....ee751f2b6ffd99b10142118b951f0fcd |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 25895559 |
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