The psychosocial impact of leg ulcers in patients with sickle cell disease: I don’t want them to know my little secret

BackgroundSickle cell disease (SCD) impacts millions of individuals worldwide and more than 100,000 people in the United States. Leg ulcers are the most common cutaneous manifestation of SCD. The health status of individuals living with chronic leg ulcers is not only influenced by clinical manifestations such as pain duration and intensity, but also by psychosocial factors. Garnering insights into the psychosocial impact can provide a more holistic view of their influence on quality of life.MethodsSemi-structured interviews were conducted with participants living with active SCD-associated leg ulcers or with a history of ulcers. Subjects were recruited from an ongoing study (INSIGHTS, Clin Trial.Gov NCT02156102) and consented to this qualitative phase of the study. Five areas were explored: leg ulcer pain, physical function, social-isolation, social relationships and religious support. Data was collected from 20 individuals during these interviews and a thematic analysis was performed and reported.ResultsTwenty participants with a mean age of 42.4 (SD ± 11.1years) were included in the study. Major themes identified included:1) pain (acute and chronic); 2) compromised physical function as demonstrated by decreased ability to walk, run, and play sports; 3) social isolation from activities either by others or self-induced as a means of avoiding certain emotions, such as embarrassment; 4) social relationships (family support and social network); 5) support and comfort through their religion or spirituality.ConclusionsSCD patients with leg ulcers expressed that they experience social isolation, intense and frequent ulcer pain, and difficulty in physical function. SCD-associated leg ulcers have been studied from a clinical approach, but the psychosocial factors investigated in this study informs how quality of life is impacted by the leg ulcers.背景 镰状细胞病（Sickle cell disease, SCD）影响全球数百万人群，美国境内患者数量亦超10万。腿部溃疡是镰状细胞病最常见的皮肤表现。慢性腿部溃疡患者的健康状态不仅受疼痛时长、疼痛强度等临床表现影响，同时也受到社会心理因素的作用。深入剖析此类社会心理影响，可为全面理解其对患者生活质量的影响提供更完整的视角。 方法 本研究针对活动性镰状细胞病相关性腿部溃疡患者，或有腿部溃疡病史的受试者开展半结构化访谈。研究对象招募自一项正在进行的队列研究（INSIGHTS，临床试验.gov编号NCT02156102），且已签署知情同意书参与本研究的定性阶段。本次访谈共覆盖五大研究维度：腿部溃疡疼痛、躯体功能、社交孤立、社会关系及宗教支持。研究共纳入20名受试者并完成数据采集，随后采用主题分析法开展分析并形成研究报告。 结果 本研究共纳入20名受试者，平均年龄为42.4岁（标准差±11.1岁）。最终识别出五大核心主题：1）疼痛（包括急性疼痛与慢性疼痛）；2）躯体功能受损，具体表现为行走、跑步及参与体育运动的能力下降；3）社交孤立：既可能因他人因素导致，也可能因受试者自身为规避尴尬等情绪而主动回避社交活动；4）社会关系（涵盖家庭支持与社交网络）；5）通过宗教或精神信仰获得的支持与慰藉。 结论 罹患腿部溃疡的镰状细胞病患者自述存在社交孤立、剧烈且频发的溃疡疼痛，以及躯体活动困难等问题。既往针对镰状细胞病相关性腿部溃疡的研究多聚焦于临床视角，而本研究所探讨的社会心理因素，则揭示了腿部溃疡对患者生活质量的具体影响机制。