Unitat d'Expertesa en Síndromes de Sensibilització Central, Servei de Reumatologia, Vall d'Hebron Hospital Universitari, Barcelona, Spain.
Escoles Universitàries Gimbernat, Autonomous University of Barcelona, Barcelona, Spain.
Musculoskeletal Care. 2024 Jun;22(2):e1905. doi: 10.1002/msc.1905.
To explore the experiences of individuals with fibromyalgia (FM) through written narratives (WN) and to preliminarily investigate the potential value of these narratives for healthcare professionals in assessing the overall perceived severity and disability experienced by individuals with FM.
This cross-sectional study was conducted with 46 participants with a FM diagnosis. They were asked to complete a WN task that aimed to capture their personal experiences. The degree of severity and disability expressed in their texts was assessed by researchers, and participants were also asked to complete the Revised Fibromyalgia Impact Questionnaire (FIQR), the Hospital Anxiety and Depression Scale (HAD), and the Tampa Scale for Kinesophobia.
Eight main themes were identified after qualitatively analysing the narratives provided by participants: story of their illness, FM characteristics, other illnesses, impact, coping strategies, social support, pain triggers and treatments. Pain emerges as a profound symptom affecting mental, physical, and social well-being, with diverse triggers and coping mechanisms. Participants highlighted difficulties in the diagnostic process, used multiple treatment strategies, and expressed a lack of understanding from healthcare professionals and society. There were significant correlations between researchers' assessments of severity and disability of the writings and FIQR and HAD scores. This study emphasises the value of narratives in capturing the multifaceted nature of FM experiences and hints at their potential for clinical understanding and management.
通过书面叙述（WN）探索纤维肌痛（FM）患者的体验，并初步探讨这些叙述对于医疗保健专业人员评估 FM 患者整体感知严重程度和残疾的潜在价值。
本横断面研究纳入了 46 名 FM 诊断患者。他们被要求完成一项 WN 任务，旨在捕捉他们的个人经历。研究人员评估了他们文本中表达的严重程度和残疾程度，参与者还完成了修订后的纤维肌痛影响问卷（FIQR）、医院焦虑和抑郁量表（HAD）以及恐惧运动量表（Tampa Scale for Kinesophobia）。
对参与者提供的叙述进行定性分析后，确定了 8 个主要主题：疾病故事、FM 特征、其他疾病、影响、应对策略、社会支持、疼痛触发因素和治疗。疼痛是一种深刻的症状，影响着身心和社会福祉，具有多种触发因素和应对机制。参与者强调了诊断过程中的困难，使用了多种治疗策略，并表示医疗保健专业人员和社会缺乏理解。研究人员对写作的严重程度和残疾程度的评估与 FIQR 和 HAD 评分之间存在显著相关性。本研究强调了叙述在捕捉 FM 体验的多面性方面的价值，并暗示了它们在临床理解和管理方面的潜力。
