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Volume 38 Issue 2
Feb.  2022
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GAO Jia-min, MA Zheng. Status and impact factors of social support for people with rare diseases in China[J]. Chinese Journal of Public Health, 2022, 38(2): 153-156. doi: 10.11847/zgggws1126356
Citation: GAO Jia-min, MA Zheng. Status and impact factors of social support for people with rare diseases in China[J]. Chinese Journal of Public Health, 2022, 38(2): 153-156. doi: 10.11847/zgggws1126356

Status and impact factors of social support for people with rare diseases in China

doi: 10.11847/zgggws1126356
  • Received Date: 2019-10-09
    Available Online: 2021-11-16
  • Publish Date: 2022-02-10
  •   Objective  To analyze the status and correlated factors of social support for people with rare diseases in China.  Methods  We conducted an internet- or telephone-based survey among 1 771 self-reported rare disease patients recruited with snow balling sampling during February 2016 in China. The Medical Outcomes Study Social Support Survey – Chinese Version (MOS-SSS) was applied to measure the social support for the patients. Descriptive statistics and linear regression were employed in data analysis.  Results  The total score of social support for the patients was 60.37 ± 18.23 and domain scores were 13.40 ± 4.12 for tangible support, 22.99 ± 7.89 for emotional/informational support, 8.42 ± 3.11 for positive social interaction, 8.87 ± 3.21 for affectionate support, and 6.69 ± 1.92 for additional items, respectively. The results of multivariate stepwise linear regression analysis demonstrated that the rare disease patients being married, retired, and being a student were more likely to have a strong social support; while, those at elder age, with the education of primary school and below, unemployed, living in rural regions, and with disease complication were more likely to have a weak social support.  Conclusion  In China, the social support for rare disease patients is at a low level and associated with the patients' age, education, marital status, occupation, residence, and whether having complicated disease.
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  • [1]
    新华社. 中共中央国务院印发《“健康中国2030”规划纲要》[EB/OL]. (2016 – 10 – 25)[2017 – 01 – 04]. http://www.gov.cn/xinwen/2016-10/25/content_5124174.htm.
    [2]
    Schieppati A, Henter JI, Daina E, et al. Why rare diseases are an important medical and social issue[J]. The Lancet, 2008, 371(9629): 2039 – 2041. doi: 10.1016/S0140-6736(08)60872-7
    [3]
    Arno PS, Bonuck K, Davis M. Rare diseases, drug development, and AIDS: the impact of the orphan drug act[J]. The Milbank Quarterly, 1995, 73(2): 231 – 252. doi: 10.2307/3350258
    [4]
    The European Parliament and the Council of the European Union. Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products[EB/OL]. [2020 – 02 – 19]. https://ec.europa.eu/health/sites/health/files/files/eudralex/vol-1/reg_2000_141_cons-2009-07/reg_2000_141_cons-2009-07_en.pdf.
    [5]
    Ghebreyesus TA. Statement for rare disease day[EB/OL]. [2018 – 01 – 02]. https://www.who.int/mediacentre/news/statements/2018/rare-disease-day/en/.
    [6]
    House JS. Work stress and social support[M]. Reading: Addison-Wesley, 1981: 33 – 36.
    [7]
    彪巍, 肖永康, 陈任, 等. 我国罕见病患者社会支持研究[J]. 医学与社会, 2012, 25(10): 53 – 55. doi: 10.3870/YXYSH.2012.10.016
    [8]
    Yu DSF, Lee DTF, Woo J. Psychometric testing of the Chinese version of the medical outcomes study social support survey (MOS-SSS-C)[J]. Research in Nursing and Health, 2004, 27(2): 135 – 143. doi: 10.1002/nur.20008
    [9]
    王成林. 请关注罕见病研究[J]. 罕少疾病杂志, 2009, 16(2): 9 – 10. doi: 10.3969/j.issn.1009-3257.2009.02.001
    [10]
    徐昊鹏, 朱翀, 弓孟春, 等. 中国罕见病研究的现状与未来[J]. 协和医学杂志, 2018, 9(1): 5 – 9. doi: 10.3969/j.issn.1674-9081.2018.01.002
    [11]
    陈翠萍, 马桂芬, 杨春琴, 等. 医疗社会支持量表中文版应用于脑卒中病人的信效度测量[J]. 护理研究, 2015, 29(11B): 3994 – 3996.
    [12]
    何文奇, 杨晓, 乔晓丽, 等. 中文版医疗社会支持量表应用于妇科癌症病人的信效度评价[J]. 护理研究, 2017, 31(14): 1709 – 1713. doi: 10.3969/j.issn.1009-6493.2017.14.012
    [13]
    Wang WR, Lau Y, Chow A, et al. Health-related quality of life and social support among Chinese patients with coronary heart disease in mainland China[J]. European Journal of Cardiovascular Nursing, 2014, 13(1): 48 – 54. doi: 10.1177/1474515113476995
    [14]
    李慧文, 胡雁, 鲍美娟, 等. HAART治疗初期HIV感染者/AIDS病人社会支持与生存质量调查[J]. 护理研究, 2015, 29(11B): 4016 – 4018.
    [15]
    Sherbourne CD, Stewart AL. The MOS social support survey[J]. Social Science and Medicine, 1991, 32(6): 705 – 714. doi: 10.1016/0277-9536(91)90150-B
    [16]
    黎欢. 医疗社会支持量表简体中文版在艾滋病患者中的心理测量学评定及应用研究[D]. 长沙: 中南大学, 2012.
    [17]
    郭子韩, 蔡卫平, 朱亚静, 等. 广州市HIV/AIDS病人社会支持现状及影响因素分析[J]. 中国艾滋病性病, 2015, 21(6): 481 – 484.
    [18]
    孙莉莉, 高洁, 罗小虎. 血液透析患者生命质量、社会支持及影响因素[J]. 中国公共卫生, 2013, 29(11): 1600 – 1603. doi: 10.11847/zgggws2013-29-11-12
    [19]
    马晓琴. 浅析农村脑瘫儿童家庭的社会支持 —— 以宁夏G村为例[J]. 社会工作与管理, 2016, 16(5): 81 – 86. doi: 10.3969/j.issn.1671-623X.2016.05.012
    [20]
    杨雄, 程福财. 政府扶助与社会支持 —— 以闸北区为例: 上海弱势青少年生存状况[J]. 青年研究, 2002(9): 1 – 10. doi: 10.3969/j.issn.1008-1437.2002.09.001
    [21]
    Rosso AL, Taylor JA, Tabb LP, et al. Mobility, disability, and social engagement in older adults[J]. Journal of Aging and Health, 2013, 25(4): 617 – 637. doi: 10.1177/0898264313482489
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