Outcome Measures for Functional Neurological Disorder: A Review of the Theoretical Complexities

Nicholson, Timothy R; Carson, Alan; Edwards, Mark J.; Goldstein, Laura H.; Hallett, Mark; Mildon, Bridget; Nielsen, Glenn; Nicholson, Clare; Perez, David L.; Pick, Susannah; Stone, Jon

doi:10.1176/appi.neuropsych.19060128

Cited by 80 publications

(75 citation statements)

References 69 publications

(57 reference statements)

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“…We included registered in progress trials, for part 2. Articles referring to core sensorimotor FND symptoms (including seizures) were included, whilst those referring to other less common symptoms (ie, speech and swallowing and cognitive) were excluded 5…”

Section: Methodsmentioning

confidence: 99%

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Outcome measurement in functional neurological disorder: a systematic review and recommendations

Pick

Anderson

Asadi‐Pooya

et al. 2020

J Neurol Neurosurg Psychiatry

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100

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ObjectivesWe 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.MethodsA 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.ResultsFive 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).ConclusionsThere 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.

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Section: Methodsmentioning

confidence: 99%

“…FND has features that make decisions regarding outcome measurement particularly complex 4 5. These include heterogeneity and variability of symptoms and the marked influence of attention, beliefs and expectations 6–8.…”

Section: Introductionmentioning

confidence: 99%

Outcome measurement in functional neurological disorder: a systematic review and recommendations

Pick

Anderson

Asadi‐Pooya

et al. 2020

J Neurol Neurosurg Psychiatry

Self Cite

100

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“…Also, different physical features, like pain or multiple somatisations make a significant impact to disease presentation and evolution. In other words, besides functional core symptoms, other key psychological and physical features are of quite relevance for chronicity and significant dysability of FMD/FND patients (4).…”

Section: Discussionmentioning

confidence: 99%

“…The clinical features of FMD, including paroxysmal onset, waxing, and waning course, migration of symptoms to different body parts, together with possible symptom replacement (the resolution of one symptom can be followed by the appearance of another) ( 3 ), speak in favor of the unpredictable and often elusive nature of such disorders, leaving both patients and their physicians in the field of uncertainty. Furthermore, additional physical features (such as pain, fatigue, bladder, or bowel problems, etc), as well as psychiatric comorbidities, are usually associated with FND/FMD and can have significant impact on outcome ( 4 ).…”

Section: Introductionmentioning

confidence: 99%

Changes of Phenotypic Pattern in Functional Movement Disorders: A Prospective Cohort Study

et al. 2020

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Introduction: Functional movement disorders (FMD) refer to a group of movement disorders that present with clinical characteristics incongruent to those due to established pathophysiologic processes, as for example in the case of neurodegeneration or lesions. The aim of this study was to assess clinical features that contribute to the specific phenotypic presentations and disease course of FMD. Methods: The study consisted of 100 patients with FMD treated at Clinic for Neurology, Clinical Center of Serbia, who were longitudinally observed. Comprehensive clinical and psychiatric assessment was performed at the baseline, when initial FMD phenotype was defined. Follow-up assessment of phenotypic pattern over the time and clinical course was done after 3.2 ± 2.5 years at average. Results: We showed that 48% of FMD patients were prone to changes of phenotypic pattern during the disease course. Dystonia had tendency to remains as single and unchanged phenotype over the time (68.2%), while patients initially presented with Tremor, Gait disorder, Parkinsonism and Mixed phenotype were more susceptible to developing additional symptoms (62.5, 50, and 100%, respectively). Higher levels of somatoform experiences (p = 0.033, Exp(B) = 1.082) and higher motor severity (p = 0.040, Exp(B) = 1.082) at baseline assessment were associated with an increased likelihood of further enriching of FMD phenotype with additional functional symptoms. Also, these patients more frequently reported pain, and had higher scores on majority of applied psychiatric scales, together with more frequent presence of major depressive disorder. Conclusion: Results from this prospective study suggested tendency for progression and enrichment of functional symptoms in FMD patients over time. Besides functional core symptoms, other key psychological and physical features (like pain or multiple somatisations) were quite relevant for chronicity and significant dysability of FMD patients.

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“…A case-control study comparing FMD with neuromuscular disorders found that quality of life was not affected by motor symptoms. 4 An important issue is the lack on validated and clinically relevant outcome measures in FNS, 5 generating uncertainty in interpreting the results of the different outcome measures in this patient group.…”

Section: Discussionmentioning

confidence: 99%

Botulinum neurotoxin (BoNT) treatment in functional movement disorders: long-term follow-up

Dreissen

Lambert

Dijk

et al. 2020

J Neurol Neurosurg Psychiatry

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Outcome Measures for Functional Neurological Disorder: A Review of the Theoretical Complexities

Cited by 80 publications

References 69 publications

Outcome measurement in functional neurological disorder: a systematic review and recommendations

Outcome measurement in functional neurological disorder: a systematic review and recommendations

Changes of Phenotypic Pattern in Functional Movement Disorders: A Prospective Cohort Study

Botulinum neurotoxin (BoNT) treatment in functional movement disorders: long-term follow-up

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