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Outcome measurement in functional neurological disorder: a systematic review and recommendations.
Journal of Neurology, Neurosurgery, and Psychiatry ( IF 11.0 ) Pub Date : 2020-02-28 , DOI: 10.1136/jnnp-2019-322180
Susannah Pick 1 , David G Anderson 2 , Ali A Asadi-Pooya 3, 4 , Selma Aybek 5 , Gaston Baslet 6 , Bastiaan R Bloem 7 , Abigail Bradley-Westguard , Richard J Brown 8 , Alan J Carson 9 , Trudie Chalder 1 , Maria Damianova 2 , Anthony S David 10 , Mark J Edwards 11 , Steven A Epstein 12 , Alberto J Espay 13 , Béatrice Garcin 14 , Laura H Goldstein 1 , Mark Hallett 15 , Joseph Jankovic 16 , Eileen M Joyce 17 , Richard A Kanaan 18 , Roxanne C Keynejad 1 , Kasia Kozlowska 19 , Kathrin LaFaver 20 , W Curt LaFrance 21 , Anthony E Lang 22 , Alex Lehn 23 , Sarah Lidstone 22 , Carine W Maurer 24 , Bridget Mildon 25 , Francesca Morgante 11 , Lorna Myers 26 , Clare Nicholson 27 , Glenn Nielsen 11 , David L Perez 28 , Stoyan Popkirov 29 , Markus Reuber 30 , Karen S Rommelfanger 31 , Petra Schwingenshuh 32 , Tereza Serranova 33 , Paul Shotbolt 1 , Glenn T Stebbins 34 , Jon Stone 9 , Marina Aj Tijssen 35 , Michele Tinazzi 36 , Timothy R Nicholson 37
Affiliation  

OBJECTIVES We aimed to identify existing outcome measures for functional neurological disorder (FND), to inform the development of recommendations and to guide future research on FND outcomes. METHODS A systematic review was conducted to identify existing FND-specific outcome measures and the most common measurement domains and measures in previous treatment studies. Searches of Embase, MEDLINE and PsycINFO were conducted between January 1965 and June 2019. The findings were discussed during two international meetings of the FND-Core Outcome Measures group. RESULTS Five FND-specific measures were identified-three clinician-rated and two patient-rated-but their measurement properties have not been rigorously evaluated. No single measure was identified for use across the range of FND symptoms in adults. Across randomised controlled trials (k=40) and observational treatment studies (k=40), outcome measures most often assessed core FND symptom change. Other domains measured commonly were additional physical and psychological symptoms, life impact (ie, quality of life, disability and general functioning) and health economics/cost-utility (eg, healthcare resource use and quality-adjusted life years). CONCLUSIONS There are few well-validated FND-specific outcome measures. Thus, at present, we recommend that existing outcome measures, known to be reliable, valid and responsive in FND or closely related populations, are used to capture key outcome domains. Increased consistency in outcome measurement will facilitate comparison of treatment effects across FND symptom types and treatment modalities. Future work needs to more rigorously validate outcome measures used in this population.

中文翻译:

功能性神经系统疾病的结果测量:系统评价和建议。

目的我们旨在确定功能性神经疾病(FND)的现有结果指标,为建议的制定提供信息并指导有关FND结果的未来研究。方法进行了系统的审查,以确定现有的FND特定的结局指标,以及先前治疗研究中最常见的指标领域和指标。在1965年1月至2019年6月之间对Embase,MEDLINE和PsycINFO进行了搜索。在FND核心成果度量小组的两次国际会议上讨论了这些发现。结果确定了五种针对FND的特定措施-三名临床医生评级和两名患者评级-但尚未对其评估特性进行严格评估。在成人的FND症状范围内,未发现可使用的任何单一措施。在随机对照试验(k = 40)和观察性治疗研究(k = 40)中,结局指标最常评估核心FND症状变化。通常测量的其他领域是其他生理和心理症状,生活影响(即生活质量,残疾和一般功能)和卫生经济学/成本效用(例如医疗资源的使用和质量调整的生命年)。结论很少有经过充分验证的针对FND的结局指标。因此,目前,我们建议使用已知在FND或密切相关的人群中可靠,有效且反应迅速的结果指标来捕获关键的结果域。结果测量结果一致性的提高将有助于比较FND症状类型和治疗方式的治疗效果。
更新日期:2020-05-15
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