Department of Orthopaedic Surgery and Musculoskeletal Medicine, University of Otago, Christchurch 8011, New Zealand.
Pain Med. 2023 Dec 1;24(12):1355-1363. doi: 10.1093/pm/pnad111.
Complex Regional Pain Syndrome (CRPS) most frequently affects the upper limb, with high associated disability. Delays to diagnosis and appropriate treatment can adversely impact prognosis and quality of life, but little is known about the healthcare experiences of people with CRPS. This study aimed to explore lived experiences of diagnosis and treatment for people with upper limb CRPS.
Participants were recruited through online support groups and multiple public and private healthcare settings in the Greater Wellington Region, New Zealand. Semi-structured interviews were conducted with participants who had experienced upper limb CRPS for more than three months and less than three years. Interviews were transcribed verbatim and analysed using reflexive thematic analysis.
Thirteen participants (11 female, 2 male) aged between 43 and 68 years were interviewed. Duration of CRPS ranged from 7 months to 2.5 years. Five themes were identified. Participants initially engaged in healthcare out of a desire to return to being the person they were before having CRPS. Three interacting experiences epitomised the overall healthcare experience: (1) not knowing what is going on, (2) not being taken seriously, and (3) healthcare as adding another layer of load. Meanwhile, participants used multiple approaches in an attempt to not let CRPS stop them from continuing to live their lives.
Participants in this study felt that credible information, validation, and simplification from healthcare providers and systems would support their process of navigating towards a meaningful life and self-concept in the presence of CRPS.
复杂性区域疼痛综合征（CRPS）最常影响上肢，伴随高残疾率。诊断和适当治疗的延误会对预后和生活质量产生不利影响，但人们对 CRPS 患者的医疗保健体验知之甚少。本研究旨在探讨上肢 CRPS 患者的诊断和治疗体验。
通过新西兰惠灵顿地区的在线支持团体以及多个公共和私人医疗保健机构招募参与者。对上肢 CRPS 患病时间超过 3 个月但少于 3 年的参与者进行半结构化访谈。访谈内容逐字转录，并使用反思性主题分析进行分析。
共对 13 名参与者（11 名女性，2 名男性）进行了访谈，年龄在 43 至 68 岁之间。CRPS 的持续时间从 7 个月到 2.5 年不等。确定了五个主题。参与者最初寻求医疗保健是为了恢复患 CRPS 之前的自我。三种相互作用的体验概括了整体医疗保健体验：（1）不知道发生了什么，（2）不被重视，（3）医疗保健增加了另一层负担。同时，参与者尝试了多种方法，试图不让 CRPS 阻止他们继续生活。
本研究中的参与者认为，医疗保健提供者和系统提供可信的信息、验证和简化将支持他们在 CRPS 存在的情况下，朝着有意义的生活和自我概念发展的过程。
