Wormgoor Marjon E A, Rodenburg Sanne C
Vestfold Hospital Trust, Division of Mental Health and Addiction, Tønsberg, Norway.
Neuroscience and Cognition, Graduate School of Life Sciences, Faculty of Medicine, Utrecht University, Utrecht, Netherlands.
Front Neurol. 2023 Dec 1;14:1247698. doi: 10.3389/fneur.2023.1247698. eCollection 2023.
Post-exertional malaise (PEM) is considered a hallmark characteristic of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This may also apply to subgroups of patients with long COVID-induced ME/CFS. However, it is uncertain to what extent PEM is acknowledged in routine specialist healthcare for ME/CFS patients, and how this affects patient outcomes.
This study aims to evaluate to what extent ME/CFS patients experienced focus on PEM in specialist healthcare practice and its significance for outcome and care quality.
Data from two online cross-sectional surveys covering specialist healthcare services for ME/CFS patients at rehabilitation institutes in Norway and two regional hospitals, respectively, were analyzed. Evaluations of 788 rehabilitation stays, 86 hospital consultations, and 89 hospital interventions were included. Logistic regression models and Mann-Whitney U-tests were used to quantify the impact of addressing PEM on health and functioning, care satisfaction, or benefit. Spearman's rank correlation and Cronbach's alpha of focus on PEM with the respondents' perception of healthcare providers' knowledge, symptom acknowledgment, and suitability of intervention were assessed as measures for care quality and their internal consistency, respectively.
PEM was addressed in 48% of the rehabilitation stays, 43% of the consultations, and 65% of the hospital interventions. Failure to address PEM roughly doubled the risk of health deterioration, following rehabilitation (OR = 0.39, 95% CI 0.29-0.52; 40.1% vs. 63.2% = <0.001) and hospital intervention (OR = 0.34, 95% CI 0.13-0.89; 22.4% vs. 45.2%, = 0.026). The focus on PEM (PEM-focus) during the clinical contact was associated with significantly higher scores on patients' rated care satisfaction and benefit of both consultation and intervention. Furthermore, addressing PEM was (inter)related to positive views about healthcare providers' level of knowledge of ME/CFS, their acknowledgment of symptoms, obtained knowledge, and the perceived suitability of intervention (Cronbach's alpha ≥0.80).
PEM is still frequently not acknowledged in specialist healthcare practice for ME/CFS patients in Norway. Not addressing PEM substantially increased the probability of a decline in health and functioning following the intervention and was strongly associated with reduced perceived care quality, satisfaction, and benefit. These findings may be related to the applied explanatory models for ME/CFS and are most likely of relevance to long COVID.
运动后不适（PEM）被认为是肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的一个标志性特征。这可能也适用于长期新冠病毒感染引发的ME/CFS患者亚组。然而，在针对ME/CFS患者的常规专科医疗保健中，PEM在多大程度上得到认识，以及这如何影响患者预后，尚不确定。
本研究旨在评估ME/CFS患者在专科医疗实践中对PEM的关注程度及其对预后和护理质量的意义。
分别分析了来自挪威两家康复机构以及两家地区医院针对ME/CFS患者的专科医疗服务的两项在线横断面调查数据。纳入了对788次康复住院、86次医院会诊和89次医院干预的评估。使用逻辑回归模型和曼-惠特尼U检验来量化关注PEM对健康和功能、护理满意度或益处的影响。分别评估了对PEM的关注与受访者对医疗服务提供者的知识、症状认知以及干预适宜性的看法之间的斯皮尔曼等级相关性和克朗巴哈系数，以此作为护理质量及其内部一致性的衡量指标。
在48%的康复住院、43%的会诊以及65%的医院干预中提到了PEM。未提及PEM使康复后（比值比[OR]=0.39，95%置信区间[CI]0.29 - 0.52；40.1%对63.2%，P<0.001）以及医院干预后（OR = 0.34，95% CI 0.13 - 0.89；22.4%对45.2%，P = 0.026）健康恶化的风险大致增加了一倍。临床接触期间对PEM的关注（PEM关注）与患者对会诊和干预的护理满意度评分及益处显著更高相关。此外，提及PEM与对医疗服务提供者对ME/CFS的知识水平、对症状的认知、所获知识以及干预适宜性的积极看法相关（克朗巴哈系数≥0.80）。
在挪威，针对ME/CFS患者的专科医疗实践中，PEM仍然经常未得到认识。未提及PEM大幅增加了干预后健康和功能下降的可能性，并且与护理质量、满意度和益处的感知降低密切相关。这些发现可能与应用的ME/CFS解释模型有关，并且很可能与长期新冠病毒感染相关。
