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

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.

Fig. 1

Proportion of patient needs and financial support that respondents have received. Knowledge popularization: Such as timely understanding of the disease related medical care knowledge and policy information guidance, to assist in the development of disease course planning. Social care support: Such as implement the policy of subsidizing nursing fees and reducing the fees charged by professional nursing institutions. Emotional support: Such as activities, mutual talks and encouragements between patients' organizations. Social acceptance: Such as popularizing the knowledge of rare bone diseases to the public so as to gain the acceptance and respect of patients with rare bone diseases and reducing discrimination. Healthcare support: Such as increasing subsidies for medical expenses, formulating a scientific and effective treatment plan