背景:造血干细胞移植(HSCT)后的慢性移植物抗宿主病(GVHD)与不良的健康相关生活质量(HRQoL)和功能状态有关。然而,很少有研究从患者角度评估慢性GVHD相关残疾和特定活动限制.这项分析的目的是评估身体,认知,和工作残疾,并描述潜在可就业的普通劳动力中慢性GVHD患者残疾的预测因素。
方法:横截面,在线,患有慢性GVHD的患者调查于2020年对报告患有活动性慢性GVHD的成年美国患者进行了调查(即,在过去的5年内)遵循HSCT。数据包括人口统计,诊断,工作状态,根据Lee症状量表(LSS)的慢性GVHD症状,以及对日常生活活动的影响。描述性和相关性分析知情复合残疾定义:(1)严重认知障碍,(2)严重的身体残疾,(3)残疾。
结果:在本分析中包括的137名GVHD受访者中,47.0%报告了严重的认知障碍,大约三分之二的人报告了严重的身体残疾(67.4%)和工作残疾(62.8%)。慢性GVHD严重程度/持续时间,症状(Lee症状量表),所咨询的移植专家数量与所有类型的残疾相关(单变量分析).严重的认知障碍与所咨询的移植专家的数量有关,女性的严重身体残疾,和非白种人的工作残疾。
结论:在此分析中,我们发现,特定症状的存在和所咨询的移植专家的数量与所有类型的严重残疾相关;女性可以预测严重的身体残疾和非白种人的工作残疾.这些发现增加了对慢性GVHD相关残疾的理解,建议需要改善患者的社会支持,并强调最需要帮助的人的潜在指标。
慢性移植物抗宿主病(GVHD)是一种可能的严重并发症,可能发生在某人接受另一个人的骨髓或干细胞移植后。慢性GVHD的症状可能很严重,并可能影响生活质量。为了更好地了解慢性GVHD如何影响生活质量,我们要求美国患有慢性GVHD的成年人填写一项调查。这项研究的目的是找出慢性GVHD如何影响日常活动和工作。调查询问了包括个人卫生在内的体育活动,吃,购物,和使用洗手间的能力,调查询问了心理任务,包括管理个人财务和与他人的互动。调查还询问了有关工作的问题,例如需要休残疾假或因慢性GVHD而离职。许多完成调查的慢性GVHD患者表示,他们在心理和/或身体任务方面存在严重困难,许多人都有与工作有关的残疾。与许多移植专家会面的患有更严重的慢性GVHD的人更有可能在精神和身体任务上遇到困难,并且也有工作残疾。完成调查的女性比男性更有可能报告严重的身体残疾,非白人参与者更有可能报告工作残疾.这项调查的结果强调了慢性GVHD患者需要改善社会支持。
BACKGROUND: Chronic graft-versus-host disease (GVHD) following hematopoietic stem cell transplantation (HSCT) is associated with poor health-related quality of life (HRQoL) and functional status. However, few studies have evaluated chronic GVHD-related disability and specific activity limitations from a patient perspective. The objective of this analysis was to assess physical, cognitive, and work disability, and describe factors predictive of disability in patients with chronic GVHD in the potentially employable general workforce.
METHODS: The cross-sectional, online, Living With Chronic GVHD Patient Survey was administered in 2020 to adult US patients who reported an active chronic GVHD diagnosis (i.e., within the previous 5 years) following HSCT. Data included demographics, diagnosis, work status, chronic GVHD symptoms per the Lee Symptom Scale (LSS), and effects on daily living activities. Descriptive and correlational analyses informed composite disability definitions: (1) severe cognitive disability, (2) severe physical disability, and (3) work disability.
RESULTS: Of 137 respondents with GVHD included in this analysis, 47.0% reported severe cognitive disability, and approximately two-thirds each reported severe physical disability (67.4%) and work disability (62.8%). Chronic GVHD severity/duration, symptoms (Lee Symptom Scale), and number of transplant specialists consulted were associated with all types of disability (univariable analyses). Severe cognitive disability was associated with the number of transplant specialists consulted, severe physical disability with female sex, and work disability with nonwhite race.
CONCLUSIONS: In this analysis, we found that the presence of specific symptoms and the number of transplant specialists consulted were associated with all types of severe disability; female sex was predictive of severe physical disability and nonwhite race of work disability. These findings add to the understanding of chronic GVHD-associated disability, suggest a need for improved social support for patients, and highlight potential indicators for those most in need.
Chronic graft-versus-host disease (GVHD) is a possible serious complication that can occur after someone has received a bone marrow or stem cell transplant from another person. Symptoms of chronic GVHD can be severe and can affect quality of life. To better understand exactly how chronic GVHD affects quality of life, we asked adults in the USA with chronic GVHD to fill out a survey. The objective of this research was to find out how chronic GVHD affects daily activities and work. The survey asked about physical activities including personal hygiene, eating, shopping, and ability to use the restroom, and the survey asked about mental tasks including managing personal finances and interactions with other people. The survey also asked questions about work, such as the need to take disability leave or to leave a job due to chronic GVHD. Many people with chronic GVHD who completed the survey said they had severe difficulty with mental and/or physical tasks, and many had work-related disability. People with more severe chronic GVHD who had met with many transplant specialists were more likely to have difficulty with mental and physical tasks and also to have work disability. Women who completed the survey were more likely to report severe physical disability than men, and nonwhite participants were more likely to report work disability. The results of this survey highlight a need for improved social support for patients with chronic GVHD.