Roberts Deb
Liverpool CFS Therapy Service, Royal Liverpool and Broadgreen University Hospitals, Liverpool, UK,
Patient Relat Outcome Meas. 2018 Aug 1;9:253-262. doi: 10.2147/PROM.S155642. eCollection 2018.
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient's perspective. One indicator of impact can be gained by measuring quality of life (QoL). By applying a patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned. Such a tool can act therapeutically tool to promote holistic and individualized professional interventions and interval measurement can inform commissioning of specialist services. Standard practice appears not fully to capture the experience of CFS, while a search of the literature turned up QoL patient-reported outcome tools, but failed to reveal a CFS/ME-specific measure. The author explores a valid and reliable PROM that can monitor change and evaluate the UK National Institute of Clinical Excellence rehabilitation program, as delivered by specialist National Health Service units. An alternative, the World Health Organization's quality-of life instrument (WHOQoL)-Bref26, is reviewed for relevance to the condition, measuring treatment outcomes and the wider debate of measuring QoL in LTCs.
慢性疲劳综合征(CFS),也称为肌痛性脑脊髓炎(ME),是一种具有挑战性的长期病症(LTC),症状复杂且波动。其临床表现具有异质性,缺乏诊断指标;因此,在医疗保健过程中,必须从患者的角度去了解情况。通过测量生活质量(QoL)可以获得一个影响指标。通过应用患者报告结局测量(PROM),专业人员可以收集与被询问患者直接相关的见解。这样一种工具可以作为一种治疗手段,促进全面和个性化的专业干预,而定期测量可以为专科服务的委托提供参考。标准做法似乎未能充分体现CFS患者的经历,虽然对文献的检索发现了生活质量患者报告结局工具,但未能找到针对CFS/ME的特定测量方法。作者探索了一种有效且可靠的PROM,它可以监测变化并评估由英国国家医疗服务体系(NHS)专科单位实施的英国国家临床优化研究所康复计划。还对另一种工具,即世界卫生组织生活质量量表(WHOQoL)-Bref26进行了审查,以评估其与该病症的相关性、测量治疗结果以及在长期病症中测量生活质量这一更广泛的讨论。