{"title":"复杂区域疼痛综合征患者的生活经验视角：他们的病情，治疗和功能结果的历史调查研究。","authors":"Alexander Cd Smith, Benjamin H Miranda","doi":"10.1177/20494637251336636","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Complex Regional Pain Syndrome (CRPS) is a rare, chronic pain disorder that can have a devastating impact. Its cause remains unclear and debate over treatment strategies continues. The aim of the study was to utilise patient-reported outcomes to aid in the further evaluation of treatment options.</p><p><strong>Method: </strong>An online survey was distributed with ethical approval to members of a CRPS charity. The Checklist for Reporting Results of Internet E-Surveys was implemented. Adults who met the patient-reported aspect of the Budapest Criteria were included (non-validated). Functional scores were reported using the shortened Disabilities of the Arm, Shoulder and Hand outcome measurement tool (QuickDASH) and Lower Extremity Functional Scale (LEFS). Participants completed a pre-injury score, a score related to injury and a score related specifically to CRPS symptoms. Respondents were also asked to rate a number of pharmacological and non-pharmacological treatments for CRPS.</p><p><strong>Results: </strong>Respondents were mostly female (87%, 447/514) with a mean age of 49 years (SD 13). 69% (354/514) reported trauma as the inciting event. Anxiety (55%, 283/514) was the most commonly reported co-morbidity. Opioids (72%, 258/358) and Physical Therapy/Rehabilitation (63%, 281/444) were reported as the most beneficial (used by >10% of respondents) pharmacological and non-pharmacological therapies respectively. Median CRPS functional scores were significantly worse than scores relating to the injury alone, for both QuickDASH (56 (IQR 36-77) versus 77 (IQR 61-91), <i>p</i> < .001) and LEFS (20 (IQR 8-40) versus 7 (IQR 3-17), <i>p</i> < .001).</p><p><strong>Conclusion: </strong>We present the first study using validated patient-reported outcome measures of limb-specific function in a solely CRPS population. These data quantify the devastating impact of CRPS and help make its prevention and treatment a priority amongst those who encounter it. The treatment data should inform future research, especially in successful therapies that were less commonly utilised.</p>","PeriodicalId":46585,"journal":{"name":"British Journal of Pain","volume":" ","pages":"20494637251336636"},"PeriodicalIF":1.3000,"publicationDate":"2025-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12003334/pdf/","citationCount":"0","resultStr":"{\"title\":\"Lived experience perspectives of persons with complex regional pain syndrome: a survey study of the history of their condition, treatments and functional outcomes.\",\"authors\":\"Alexander Cd Smith, Benjamin H Miranda\",\"doi\":\"10.1177/20494637251336636\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Complex Regional Pain Syndrome (CRPS) is a rare, chronic pain disorder that can have a devastating impact. Its cause remains unclear and debate over treatment strategies continues. The aim of the study was to utilise patient-reported outcomes to aid in the further evaluation of treatment options.</p><p><strong>Method: </strong>An online survey was distributed with ethical approval to members of a CRPS charity. The Checklist for Reporting Results of Internet E-Surveys was implemented. Adults who met the patient-reported aspect of the Budapest Criteria were included (non-validated). Functional scores were reported using the shortened Disabilities of the Arm, Shoulder and Hand outcome measurement tool (QuickDASH) and Lower Extremity Functional Scale (LEFS). Participants completed a pre-injury score, a score related to injury and a score related specifically to CRPS symptoms. Respondents were also asked to rate a number of pharmacological and non-pharmacological treatments for CRPS.</p><p><strong>Results: </strong>Respondents were mostly female (87%, 447/514) with a mean age of 49 years (SD 13). 69% (354/514) reported trauma as the inciting event. Anxiety (55%, 283/514) was the most commonly reported co-morbidity. Opioids (72%, 258/358) and Physical Therapy/Rehabilitation (63%, 281/444) were reported as the most beneficial (used by >10% of respondents) pharmacological and non-pharmacological therapies respectively. Median CRPS functional scores were significantly worse than scores relating to the injury alone, for both QuickDASH (56 (IQR 36-77) versus 77 (IQR 61-91), <i>p</i> < .001) and LEFS (20 (IQR 8-40) versus 7 (IQR 3-17), <i>p</i> < .001).</p><p><strong>Conclusion: </strong>We present the first study using validated patient-reported outcome measures of limb-specific function in a solely CRPS population. These data quantify the devastating impact of CRPS and help make its prevention and treatment a priority amongst those who encounter it. The treatment data should inform future research, especially in successful therapies that were less commonly utilised.</p>\",\"PeriodicalId\":46585,\"journal\":{\"name\":\"British Journal of Pain\",\"volume\":\" \",\"pages\":\"20494637251336636\"},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2025-04-16\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12003334/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"British Journal of Pain\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1177/20494637251336636\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"British Journal of Pain","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/20494637251336636","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
摘要
背景：复杂区域疼痛综合征（CRPS）是一种罕见的慢性疼痛障碍，可以有毁灭性的影响。其原因尚不清楚，关于治疗策略的争论仍在继续。该研究的目的是利用患者报告的结果来帮助进一步评估治疗方案。方法：一份在线调查问卷在伦理批准下分发给CRPS慈善机构的成员。实施网上电子调查报告结果核对表。符合布达佩斯标准患者报告方面的成年人被纳入（未经验证）。使用缩短的手臂、肩膀和手的残疾结果测量工具（QuickDASH）和下肢功能量表（LEFS）报告功能评分。参与者完成了损伤前评分、与损伤相关的评分和与CRPS症状相关的评分。受访者还被要求对CRPS的一些药理学和非药理学治疗进行评分。结果：受访者以女性居多（87%,447/514），平均年龄49岁（SD 13）。69%（354/514）报告创伤为诱发事件。焦虑（55%,283/514）是最常见的合并症。阿片类药物（72%,258/358）和物理治疗/康复（63%,281/444）分别被报告为最有益的药物和非药物治疗（bbb10 %的受访者使用）。CRPS功能评分中位数明显低于单纯损伤相关的评分，QuickDASH（56分（IQR 36-77） vs 77分（IQR 61-91）， p < 0.001）和LEFS（20分（IQR 8-40） vs 7分（IQR 3-17）， p < 0.001）。结论：我们提出了第一个在单独的CRPS人群中使用经过验证的患者报告的肢体特异性功能结果测量的研究。这些数据量化了CRPS的破坏性影响，并有助于使其预防和治疗成为患者的优先事项。治疗数据应该为未来的研究提供信息，特别是在不太常用的成功疗法中。
Lived experience perspectives of persons with complex regional pain syndrome: a survey study of the history of their condition, treatments and functional outcomes.
Background: Complex Regional Pain Syndrome (CRPS) is a rare, chronic pain disorder that can have a devastating impact. Its cause remains unclear and debate over treatment strategies continues. The aim of the study was to utilise patient-reported outcomes to aid in the further evaluation of treatment options.
Method: An online survey was distributed with ethical approval to members of a CRPS charity. The Checklist for Reporting Results of Internet E-Surveys was implemented. Adults who met the patient-reported aspect of the Budapest Criteria were included (non-validated). Functional scores were reported using the shortened Disabilities of the Arm, Shoulder and Hand outcome measurement tool (QuickDASH) and Lower Extremity Functional Scale (LEFS). Participants completed a pre-injury score, a score related to injury and a score related specifically to CRPS symptoms. Respondents were also asked to rate a number of pharmacological and non-pharmacological treatments for CRPS.
Results: Respondents were mostly female (87%, 447/514) with a mean age of 49 years (SD 13). 69% (354/514) reported trauma as the inciting event. Anxiety (55%, 283/514) was the most commonly reported co-morbidity. Opioids (72%, 258/358) and Physical Therapy/Rehabilitation (63%, 281/444) were reported as the most beneficial (used by >10% of respondents) pharmacological and non-pharmacological therapies respectively. Median CRPS functional scores were significantly worse than scores relating to the injury alone, for both QuickDASH (56 (IQR 36-77) versus 77 (IQR 61-91), p < .001) and LEFS (20 (IQR 8-40) versus 7 (IQR 3-17), p < .001).
Conclusion: We present the first study using validated patient-reported outcome measures of limb-specific function in a solely CRPS population. These data quantify the devastating impact of CRPS and help make its prevention and treatment a priority amongst those who encounter it. The treatment data should inform future research, especially in successful therapies that were less commonly utilised.
期刊介绍：
British Journal of Pain is a peer-reviewed quarterly British journal with an international multidisciplinary Editorial Board. The journal publishes original research and reviews on all major aspects of pain and pain management. Reviews reflect the body of evidence of the topic and are suitable for a multidisciplinary readership. Where empirical evidence is lacking, the reviews reflect the generally held opinions of experts in the field. The Journal has broadened its scope and has become a forum for publishing primary research together with brief reports related to pain and pain interventions. Submissions from all over the world have been published and are welcome. Official journal of the British Pain Society.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
