Prevalence of depression and anxiety, and their relationship to social support among patients and family caregivers of rare bone diseases

Xuefeng Lai; Yuling Jiang; Yue Sun; Zhijun Zhang; Shengfeng Wang

doi:10.1186/s13023-022-02611-3

Prevalence of depression and anxiety, and their relationship to social support among patients and family caregivers of rare bone diseases

Orphanet J Rare Dis. 2023 Jan 26;18(1):18. doi: 10.1186/s13023-022-02611-3.

Authors

Xuefeng Lai¹, Yuling Jiang², Yue Sun³, Zhijun Zhang³, Shengfeng Wang⁴

Affiliations

¹ Department of Epidemiology and Biostatistics, School of Public Health, Peking University, 38 Xueyuan Road, Haidian District, Beijing, 100191, China.
² School of Public Health, Peking University, 38 Xueyuan Road, Haidian District, Beijing, 100191, China.
³ Lingyi Foundation for Rare Bone Diseases, 1A801, Gaofa West Bund Garden, 5th Avenue, Anbao District, Shenzhen, 518133, China.
⁴ Department of Epidemiology and Biostatistics, School of Public Health, Peking University, 38 Xueyuan Road, Haidian District, Beijing, 100191, China. shengfeng1984@126.com.

Abstract

Background: Rare bone diseases (RBDs) are a set of inherited rare diseases that can cause disability and have a devastating impact on families affected, which may lead to a particular high prevalence of psychological disorders in patients and caregivers. Social support plays a role in the well-being of families with rare disease patients, but its effect on psychology of RBD families remains unclear. The purpose of the current cross-sectional quantitative study was to investigate the frequency of depression and anxiety, and their relationship with social support among RBD patients and family caregivers.

Results: A total of 196 participants responded to the questionnaire, including 72 patients and 124 caregivers. Depression was detected among 33.8% of patients and 57% of caregivers, and anxiety disorder was presented in 28.6% of patients and 50% of caregivers. Higher depression scores and anxiety scores were found in both patients and caregivers with an education level of ≤ middle school and monthly income of ≤ ￥2000 (all P < 0.05). The mean (SD) scores of Social Support Rating Scales in patients and caregivers were 37.06 (8.05) and 38.31 (5.76), respectively. After adjusting for gender, age, monthly income, education, employment and marital status, the reverse associations between depression scores, anxiety scores and social support were found merely in caregivers (depression & social support: β = - 0. 46, P < 0.001, anxiety & social support: β = - 0. 44, P < 0.001), specifically for subjective support (depression & subjective support: β = - 0.94, P < 0.001, anxiety & subjective support: β = - 0.87, P < 0.001).

Conclusions: The study identified a high prevalence of depression and anxiety among RBD patients and caregivers, and pointed out the significance of social support in alleviating psychological distress. In order to provide RBD families with comprehensive assistance, the government should actively develop programs aimed at psychological aid, policy advocacy and tangible support.

Keywords: Anxiety; Depression; Rare bone diseases; Social support.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Anxiety / epidemiology
Anxiety Disorders
Bone Diseases*
Caregivers* / psychology
Cross-Sectional Studies
Depression / etiology
Humans
Prevalence
Rare Diseases
Social Support
Surveys and Questionnaires