Scholarlink

Background <p>Literature suggests that rare disease (RD) have adverse effects on patients’ physical and psychosocial well-being. RD patients also face various challenges in their daily lives. This study aims to quantify the impact of RDs on patients in Hong Kong in terms of their sociodemographic characteristics, health-related conditions, patient experience, psychosocial support, illness perception, and self-esteem.</p> Methods <p>We conducted a cross-sectional survey of RD patients in Hong Kong. A mixed-mode survey approach, which included purposive, opportunity, and snowball sampling, was adopted. Participants were recruited through Rare Disease Hong Kong (RDHK) and completed a face-to-face, interviewer-administered survey(<i>n</i> = 176). The 127-item survey instrument covered aspects on sociodemographic characteristics, health-related conditions, patient experience, psychosocial support, illness perception, and self-esteem. Health-related quality of life (HRQL) was assessed using 12-item Short-Form Health Survey version 2 (SF-12 v2), from which a Physical Component Summary was derived for physical health, and a Mental Component Summary for psychological health. Univariate analyses and multivariate linear regression analyses were conducted subsequently to examine the associations between HRQL and sample characteristics.</p> Results <p>RD patients in this study were found to have poor physical and psychological HRQL compared with population norms. They also faced challenges and difficulties in their daily lives, including but not limited to economic activities, ability to work, sleep quality, activities of daily living, patient experience, psychosocial support, outlook on life, and self-esteem.</p> Conclusions <p>To our knowledge, this is the first study in Hong Kong that quantifies the impact of RDs on patients’ HRQL, and their experience throughout the disease journey. Due to the multi-faceted impact of RD on their patients, we opine that it is critical to adopt a capability approach that does not merely emphasize on the resourcist right and entitlement of the patients, but also ensures equality in capabilities in converting resources to outcomes they value by focusing on the social determinants of health beyond healthcare policies.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

Health and social challenges faced by rare disease patients in Hong Kong: a cross-sectional study

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年7月24日

查看全文
  • Roger Yat-Nork Chung,
  • Alvin Yik-Kiu Hui,
  • Dong Dong,
  • Jonathan Ka-Long Mak,
  • Cheryl Shu Ming Chia

摘要

Background

Literature suggests that rare disease (RD) have adverse effects on patients’ physical and psychosocial well-being. RD patients also face various challenges in their daily lives. This study aims to quantify the impact of RDs on patients in Hong Kong in terms of their sociodemographic characteristics, health-related conditions, patient experience, psychosocial support, illness perception, and self-esteem.

Methods

We conducted a cross-sectional survey of RD patients in Hong Kong. A mixed-mode survey approach, which included purposive, opportunity, and snowball sampling, was adopted. Participants were recruited through Rare Disease Hong Kong (RDHK) and completed a face-to-face, interviewer-administered survey(n = 176). The 127-item survey instrument covered aspects on sociodemographic characteristics, health-related conditions, patient experience, psychosocial support, illness perception, and self-esteem. Health-related quality of life (HRQL) was assessed using 12-item Short-Form Health Survey version 2 (SF-12 v2), from which a Physical Component Summary was derived for physical health, and a Mental Component Summary for psychological health. Univariate analyses and multivariate linear regression analyses were conducted subsequently to examine the associations between HRQL and sample characteristics.

Results

RD patients in this study were found to have poor physical and psychological HRQL compared with population norms. They also faced challenges and difficulties in their daily lives, including but not limited to economic activities, ability to work, sleep quality, activities of daily living, patient experience, psychosocial support, outlook on life, and self-esteem.

Conclusions

To our knowledge, this is the first study in Hong Kong that quantifies the impact of RDs on patients’ HRQL, and their experience throughout the disease journey. Due to the multi-faceted impact of RD on their patients, we opine that it is critical to adopt a capability approach that does not merely emphasize on the resourcist right and entitlement of the patients, but also ensures equality in capabilities in converting resources to outcomes they value by focusing on the social determinants of health beyond healthcare policies.