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

ABSTRACT: 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.

SUBMITTER: Pick S

PROVIDER: S-EPMC7279198 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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

Pick Susannah S Anderson David G DG Asadi-Pooya Ali A AA Aybek Selma S Baslet Gaston G Bloem Bastiaan R BR Bradley-Westguard Abigail A Brown Richard J RJ Carson Alan J AJ Chalder Trudie T Damianova Maria M David Anthony S AS Edwards Mark J MJ Epstein Steven A SA Espay Alberto J AJ Garcin Béatrice B Goldstein Laura H LH Hallett Mark M Jankovic Joseph J Joyce Eileen M EM Kanaan Richard A RA Keynejad Roxanne C RC Kozlowska Kasia K LaFaver Kathrin K LaFrance W Curt WC Lang Anthony E AE Lehn Alex A Lehn Alex A Lidstone Sarah S Maurer Carine W CW Mildon Bridget B Morgante Francesca F Myers Lorna L Nicholson Clare C Nielsen Glenn G Perez David L DL Popkirov Stoyan S Reuber Markus M Rommelfanger Karen S KS Schwingenshuh Petra P Serranova Tereza T Shotbolt Paul P Stebbins Glenn T GT Stone Jon J Tijssen Marina Aj MA Tinazzi Michele M Nicholson Timothy R TR

Journal of neurology, neurosurgery, and psychiatry 20200228 6

<h4>Objectives</h4>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.<h4>Methods</h4>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 discu ...[more]

PMID: 32111637

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Project description:Several measurement tools commonly used in face-to-face neurological rehabilitation have been used in telerehabilitation. However, it is not known whether these tools have adequate measurement properties and clinical utility. This systematic review aims to investigate the measurement properties and the clinical utility of measurement tools used in telerehabilitation in individuals with neurological diseases. A systematic review to investigate the measurement properties and clinical utility of measurement tools used in telerehabilitation in individuals with neurological conditions will be conducted. This systematic review will follow the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) statement. this systematic review protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO) on 28 May 2021 (registration number: CRD42021257662). Electronic searches will be performed in following databases: Medical Literature Analysis and Retrieval System Online (MEDLINE Ovid), Excerpta Medica Database (Embase Classic + Embase Ovid), Physiotherapy Evidence Database (PEDro), Scientific Electronic Library Online (Scielo), and Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS). Two trained independent reviewers will select the studies according to the inclusion criteria, and will also extract the data, evaluate the clinical utility and methodological quality. The relevant data such as design, participants, settings, and mode of administration, measurement properties, and clinical utility will be summarized. Disagreements between reviewers will be resolved by consensus or by the decision of a third independent reviewer. Hand searches of other relevant studies will be employed. The COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist and the clinical utility scale will be used to assess the methodological quality and clinical utility of these tools, respectively. This systematic review will provide information regarding the measurement properties and the clinical utility of the measurement tools used in neurological telerehabilitation. This information will be useful to assist health professionals in choosing adequate measurement tools and planning new research studies.

Project description:BACKGROUND: Dupuytren's disease of the hand is a common condition affecting the palmar fascia, resulting in progressive flexion deformities of the digits and hence limitation of hand function. The optimal treatment remains unclear as outcomes studies have used a variety of measures for assessment. METHODS: A literature search was performed for all publications describing surgical treatment, percutaneous needle aponeurotomy or collagenase injection for primary or recurrent Dupuytren's disease where outcomes had been monitored using functional measures. RESULTS: Ninety-one studies met the inclusion criteria. Twenty-two studies reported outcomes using patient reported outcome measures (PROMs) ranging from validated questionnaires to self-reported measures for return to work and self-rated disability. The Disability of Arm, Shoulder and Hand (DASH) score was the most utilised patient-reported function measure (n=11). Patient satisfaction was reported by eighteen studies but no single method was used consistently. Range of movement was the most frequent physical measure and was reported in all 91 studies. However, the methods of measurement and reporting varied, with seventeen different techniques being used. Other physical measures included grip and pinch strength and sensibility, again with variations in measurement protocols. The mean follow-up time ranged from 2 weeks to 17 years. CONCLUSIONS: There is little consistency in the reporting of outcomes for interventions in patients with Dupuytren's disease, making it impossible to compare the efficacy of different treatment modalities. Although there are limitations to the existing generic patient reported outcomes measures, a combination of these together with a disease-specific questionnaire, and physical measures of active and passive individual joint Range of movement (ROM), grip and sensibility using standardised protocols should be used for future outcomes studies. As Dupuytren's disease tends to recur following treatment as well as extend to involve other areas of the hand, follow-up times should be standardised and designed to capture both short and long term outcomes.

Project description:BACKGROUND: The placenta plays a crucial role during pregnancy for growth and development of the fetus. Less than optimal placental performance may result in morbidity or even mortality of both mother and fetus. Awareness among pediatricians, however, of the benefit of placental findings for neonatal care, is limited. OBJECTIVES: To provide a systematic overview of the relation between placental lesions and neonatal outcome. DATA SOURCES: Pubmed database, reference lists of selected publications and important research groups in the field. STUDY APPRAISAL AND SYNTHESIS METHODS: We systematically searched the Pubmed database for literature on the relation between placental lesions and fetal and neonatal mortality, neonatal morbidity and neurological outcome. We conducted three separate searches starting with a search for placental pathology and fetal and neonatal mortality, followed by placental pathology and neonatal morbidity, and finally placental pathology and neurological development. We limited our search to full-text articles published in English from January 1995 to October 2013. We refined our search results by selecting the appropriate articles from the ones found during the initial searches. The first selection was based on the title, the second on the abstract, and the third on the full article. The quality of the selected articles was determined by using the Newcastle-Ottawa Quality Assessment Scale. RESULTS: Placental lesions are one of the main causes of fetal death, where placental lesions consistent with maternal vascular underperfusion are most important. Several neonatal problems are also associated with placental lesions, whereby ascending intrauterine infection (with a fetal component) and fetal thrombotic vasculopathy constitute the greatest problem. CONCLUSIONS: The placenta plays a key role in fetal and neonatal mortality, morbidity, and outcome. Pediatricians should make an effort to obtain the results of placental examinations.

Project description:BackgroundThe management of diabetes is complex. There is growing recognition of the use of patient-reported outcome measures (PROMs) as a standardized method of obtaining an outlook on patients' functional status and well-being. However, no systematic reviews have summarized the studies that investigate the measurement properties of diabetes PROMs.ObjectiveOur aims were to conduct a systematic review of studies investigating the measurement properties of diabetes PROMs by evaluating the methodological quality and overall level of evidence of these PROMs and to categorize them based on the outcome measures assessed.MethodsThis study was guided by the PRISMA (Preferred Reporting Items for Systematic Review and Meta-Analysis) guidelines. Relevant articles were retrieved from the Embase, PubMed, and PsychINFO databases. The PROMs were evaluated with the COSMIN (COnsensus-based Standards for the selection of health Measurement Instruments) guidelines.ResultsA total of 363 articles evaluating the measurement properties of PROMs for diabetes in the adult population were identified, of which 238 unique PROMs from 248 studies reported in 209 articles were validated in the type 2 diabetes population. PROMs with at least a moderate level of evidence for ≥5 of 9 measurement properties include the Chinese version of the Personal Diabetes Questionnaire (C-PDQ), Diabetes Self-Management Instrument Short Form (DSMI-20), and Insulin Treatment Appraisal Scale in Hong Kong primary care patients (C-ITAS-HK), of which the C-PDQ has a "sufficient (+)" rating for >4 measurement properties. A total of 43 PROMs meet the COSMIN guidelines for recommendation for use.ConclusionsThis study identified and synthesized evidence for the measurement properties of 238 unique PROMs for patients with type 2 diabetes and categorized the PROMs according to their outcome measures. These findings may assist clinicians and researchers in selecting appropriate high-quality PROMs for clinical practice and research.Trial registrationPROSPERO International Prospective Register of Systematic Reviews CRD42020180978; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020180978.

Project description:BackgroundA plethora of outcome measurement instruments (OMIs) are being used in port wine stain (PWS) studies. It is currently unclear how valid, responsive, and reliable these are.ObjectivesThe aim of this systematic review was to appraise the content validity and other measurement properties of OMIs for PWS treatment to identify the most appropriate instruments and future research priorities.MethodsThis study was performed using the updated Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) methodology and adhered to PRISMA guidelines. Comprehensive searches in Medline and Embase were performed. Studies in which an OMI for PWS patients was developed or its measurement properties were evaluated were included. Two investigators independently extracted data and assessed the quality of included studies and instruments to perform qualitative synthesis of the evidence.ResultsIn total, 1,034 articles were screened, and 77 full-text articles were reviewed. A total of 8 studies were included that reported on 6 physician-reported OMIs of clinical improvement and 6 parent- or patient-reported OMIs of life impact, of which 3 for health-related quality of life and 1 for perceived stigmatization. Overall, the quality of OMI development was inadequate (63%) or doubtful (37%). Each instrument has undergone a very limited evaluation in PWS patients. No content validity studies were performed. The quality of evidence for content validity was very low (78%), low (15%), or moderate (7%), with sufficient comprehensibility, mostly sufficient comprehensiveness, and mixed relevance. No studies on responsiveness, minimal important change, and cross-cultural validity were retrieved. There was moderate- to very low-quality evidence for sufficient inter-rater reliability for some clinical PWS OMIs. Internal consistency and measurement error were indeterminate in all studies.ConclusionsThere was insufficient evidence to properly guide outcome selection. Additional assessment of the measurement properties of OMIs is needed, preferentially guided by a core domain set tailored to PWS.

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

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

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