{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T09:37:21Z","timestamp":1790761041629,"version":"4.1.0"},"reference-count":59,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2021,8,13]],"date-time":"2021-08-13T00:00:00Z","timestamp":1628812800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Molec Gen &amp;amp; Gen Med"],"published-print":{"date-parts":[[2021,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Rare diseases affect the health\u2010related quality of life (HRQoL) of patients and their family caregivers (FCs). However, limited evidence is available on the HRQoL of FCs of patients with Gaucher disease (GD). This study aimed to assess HRQoL and related factors among FCs of patients with GD in China.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A cross\u2010sectional online survey was conducted with 49 FCs recruited by convenience sampling. Participants completed the Medical Outcome Study Short Form\u201036 (SF\u201036), Zung's Self\u2010Rating Anxiety Scale, Zung's Self\u2010Rating Depression Scale, the Multi\u2010dimensional Scale of Perceived Social Support, the Herth Hope Index, and a questionnaire about FCs\u2019 and patients\u2019 sociodemographic characteristics. Single\u2010sample <jats:italic>t<\/jats:italic> tests, one\u2010way analysis of variance, and multivariate linear regression analysis were used to analyze the data analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Participating FCs had significantly lower scores in all eight SF\u201036 domains compared with the general population in China (<jats:italic>p<\/jats:italic>\u00a0&lt;\u00a00.01). FCs\u2019 gender, education, daily care time, anxiety, and the perceived disease severity of patients were significant predictors of SF\u201036 physical component summary scores. Caregiving help from others, anxiety, perceived disease severity, and medical insurance type were significant predictors of SF\u201036\u00a0mental component summary scores.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The findings showed FCs of patients with GD had lower HRQoL. There is an urgent need to address the health concerns of FCs of people with rare diseases including their HRQoL.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mgg3.1760","type":"journal-article","created":{"date-parts":[[2021,8,13]],"date-time":"2021-08-13T11:22:44Z","timestamp":1628853764000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["Family caregivers of rare disease: A survey on health\u2010related quality of life in family caregivers for Gaucher disease patients in China"],"prefix":"10.1002","volume":"9","author":[{"given":"Jiao","family":"Xu","sequence":"first","affiliation":[{"name":"School of Health Management Harbin Medical University  Harbin Heilongjiang China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Han","family":"Bao","sequence":"additional","affiliation":[{"name":"Public Health College The Inner Mongolia Medical University  Hohhot Inner Mongolia China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xinye","family":"Qi","sequence":"additional","affiliation":[{"name":"School of Health Management Harbin Medical University  Harbin Heilongjiang China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jiahui","family":"Wang","sequence":"additional","affiliation":[{"name":"School of Health Management Harbin Medical University  Harbin Heilongjiang China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hang","family":"Yin","sequence":"additional","affiliation":[{"name":"School of Health Management Harbin Medical University  Harbin Heilongjiang China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chunyang","family":"Shang","sequence":"additional","affiliation":[{"name":"Department of Hepatobiliary Surgery Peking University Care Zibo Hospital  Zibo Shandong China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel Leeyin","family":"Tan","sequence":"additional","affiliation":[{"name":"Saw Swee Hock School of Public Health National University of Singapore  Singapore Singapore"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Qunhong","family":"Wu","sequence":"additional","affiliation":[{"name":"School of Health Management Harbin Medical University  Harbin Heilongjiang China"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2798-4735","authenticated-orcid":false,"given":"Weidong","family":"Huang","sequence":"additional","affiliation":[{"name":"School of Health Management Harbin Medical University  Harbin Heilongjiang China"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,8,13]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.61533"},{"key":"e_1_2_11_3_1","first-page":"206","article-title":"Family caregiver quality of life in multiple sclerosis among Kuwaitis: A controlled study","volume":"8","author":"Alshubaili A. 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