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

  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.