Khoo Thomas, Hill Catherine L, Hoon Elizabeth, Whittle Samuel
Rheumatology Unit, The Queen Elizabeth Hospital, Adelaide, South Australia, Australia.
Rheumatology Unit, The Royal Adelaide Hospital, Adelaide, South Australia, Australia.
Open Access Rheumatol. 2022 May 5;14:87-95. doi: 10.2147/OARRR.S361804. eCollection 2022.
To explore patient perspectives on disease activity and experiences, as well as medication use of a group of fibromyalgia patients attending a single-centre rheumatology public hospital outpatient setting.
Patients seen in fibromyalgia clinic within a rheumatology unit from July 2016 to December 2019 were posted a voluntary survey with questionnaires pertaining to patient-reported measures of disease impact (FIQR), fatigue (MFI-20) and psychological distress (K10). A free-text section allowed description of disease impact. Patients were also asked to record medication use and comorbidities, which were then compared to the electronic medical records (EMR) of the overall clinic cohort.
Forty-five patients responded to the survey (43/45, 95.6% female; mean age 56.5 years). Respondents had generally severe fibromyalgia (mean FIQR 67.1/100, range 23.7-92.8), moderate psychological distress (mean K10 27.5/50, range 14-45) and high fatigue (mean MFI 74.9/100, range 40-96). Free-text responses generated themes of pervasive disease impact and the necessity of adjusting life around unpredictable symptoms. Almost half reported opioid (21/45, 46.7%) and gabapentinoid (19/45, 42.2%) use. 16/41 (39%) use cannabinoids for their fibromyalgia symptoms. Comparing medication use with survey non-respondents (n=85), there was generally similar representation except for significantly greater NSAID use among survey respondents (33/45, 73.3% vs 22/85, 25.9%, p<0.001).
For patients living with fibromyalgia in this study, there were high levels of disease activity, psychological distress and fatigue. Patients described the need to accept disease-imposed limitations and life adjustments. Almost half reported opioid use, despite evidence suggesting poor efficacy and possible harm.
探讨在一家单中心风湿科公立医院门诊就诊的一组纤维肌痛患者对疾病活动度、经历以及药物使用的看法。
向2016年7月至2019年12月期间在风湿科纤维肌痛门诊就诊的患者发放一份自愿调查问卷，问卷包含与患者报告的疾病影响指标（FIQR）、疲劳（MFI - 20）和心理困扰（K10）相关的问题。一个自由文本部分允许患者描述疾病影响。患者还被要求记录药物使用情况和合并症，然后将其与整个门诊队列的电子病历（EMR）进行比较。
45名患者回复了调查（43/45，95.6%为女性；平均年龄56.5岁）。受访者普遍患有严重的纤维肌痛（平均FIQR为67.1/100，范围为23.7 - 92.8）、中度心理困扰（平均K10为27.5/50，范围为14 - 45）和高度疲劳（平均MFI为74.9/100，范围为40 - 96）。自由文本回复产生了普遍疾病影响以及围绕不可预测症状调整生活的必要性等主题。近一半的患者报告使用了阿片类药物（21/45，46.7%）和加巴喷丁类药物（19/45，42.2%）。16/41（39%）的患者使用大麻素治疗纤维肌痛症状。将药物使用情况与未回复调查的患者（n = 85）进行比较，除了调查受访者中使用非甾体抗炎药的比例显著更高外（33/45，73.3%对22/85，25.9%，p < 0.001），总体情况相似。
在本研究中，患有纤维肌痛的患者疾病活动度、心理困扰和疲劳程度较高。患者描述了接受疾病带来的限制和生活调整的必要性。近一半的患者报告使用了阿片类药物，尽管有证据表明其疗效不佳且可能有害。
