Johnston Colleen M, Oprescu Florin I, Gray Marion
School of Health and Sports Science, Cluster for Health Improvement, University of the Sunshine Coast, Sunshine Australia.
Scand J Pain. 2015 Oct 1;9(1):30-37. doi: 10.1016/j.sjpain.2015.06.003.
Background and aims Pain is known to be a subjective experience yet the majority of pain related research does not address the lived experience of the condition. Difficult to diagnose, Complex Regional Pain Syndrome (CRPS) is often poorly managed. The aim of this paper was to identify and synthesise the currently available literature on experiences of living with chronic pain in order to understand where and how CRPS research may be best situated in the future. Methods A narrative review was performed and ProQuest, EBSCO, Informit, Scopus/Science Direct and Web of Science, Medline, CINHAL and Google Scholar were searched in order to identify the literature from 1998 until 2015. 301 papers were identified of which 197 described the lived experience of chronic pain conditions. 12 papers were examined closely to determine the experience of living with CRPS or a similar chronic pain condition that does not have a definite pain origin such as cancer or endometriosis. Results Known understandings of pain were identified and a model was developed depicting the lived experience of chronic pain starting with loss of the former healthy, pain free self and culminating in acceptance of the condition. Major themes identified were disbelief/invisibility of pain, loss, coping with a non-compliant/constant painful body, self-management and alleviating pain/treatment. The review also found that there is no peer-reviewed published literature on the lived experience of CRPS. Conclusions Little is known about the lived experience of CRPS. There appears to be a clear indication that research needs to be conducted into CRPS from a lived experience perspective in order to provide information to patients, the general public, health practitioners and policy makers of previously unknown characteristics of this condition which may improve health outcomes for this patient cohort. It has been identified that patients and their families should be active participants in education of health practitioners and in providing information to inform the development of National Pain Strategies currently being devised throughout the world. Implications Research into the lived experience of chronic pain conditions, and CRPS in particular, can help to provide information to enhance understanding enabling national pain strategies and future treatment guidelines strategies to be devised appropriately.
疼痛是一种主观体验，但大多数与疼痛相关的研究并未涉及该病症的实际生活体验。复杂性区域疼痛综合征（CRPS）难以诊断，治疗往往也不尽人意。本文旨在识别并综合当前关于慢性疼痛生活体验的文献，以了解CRPS研究未来的最佳定位及方式。方法：进行了一项叙述性综述，并检索了ProQuest、EBSCO、Informit、Scopus/科学Direct、科学网、Medline、CINHAL和谷歌学术，以识别1998年至2015年的文献。共识别出301篇论文，其中197篇描述了慢性疼痛病症的实际生活体验。仔细研究了12篇论文，以确定患有CRPS或类似慢性疼痛病症（如癌症或子宫内膜异位症等无明确疼痛根源的病症）的生活体验。结果：确定了对疼痛的已知认识，并构建了一个模型，描绘了慢性疼痛的生活体验，始于失去从前健康、无痛的自我，最终以接受病情告终。确定的主要主题包括疼痛的怀疑/不可见性、丧失、应对不顺应/持续疼痛的身体、自我管理以及缓解疼痛/治疗。综述还发现，尚无关于CRPS实际生活体验的同行评审发表文献。结论：对CRPS的实际生活体验知之甚少。显然有迹象表明，需要从实际生活体验的角度对CRPS进行研究，以便向患者、公众、医疗从业者和政策制定者提供有关该病症此前未知特征的信息，这可能改善该患者群体的健康状况。已确定患者及其家属应积极参与医疗从业者的教育，并提供信息以促进目前全球正在制定的国家疼痛策略的制定。启示：对慢性疼痛病症，尤其是CRPS的实际生活体验进行研究，有助于提供信息以增进理解，从而适当制定国家疼痛策略和未来治疗指南策略。
