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A review and evaluation of patient-reported outcome measures for spasticity in persons with spinal cord damage: Recommendations from the Ability Network - an international initiative
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Department of Rehabilitation Medicine.ORCID iD: 0000-0001-6464-9130
Roessingh Res & Dev, Netherlands.
KU Leuven Univ Leuven, Belgium; Univ Hosp Leuven, Belgium.
Univ Toronto, Canada.
2020 (English)In: Journal of Spinal Cord Medicine (JSCM), ISSN 1079-0268, E-ISSN 2045-7723, Vol. 43, no 6, p. 813-823Article, review/survey (Refereed) Published
Abstract [en]

Context: Patient-reported outcome measures (PROMs) are valuable for capturing the impact of spasticity on health-related quality of life (HRQoL) in persons with spinal cord damage (SCD) and evaluating the efficacy of interventions. Objective: To provide practical guidance for measuring HRQoL in persons with spasticity following SCD. Methods: Literature reviews identified measures of HRQoL and caregiver burden, utilized in studies addressing spasticity in SCD. Identified measures were evaluated for clinical relevance and practicality for use in clinical practice and research. The PRISM, SCI-SET, EQ-5D and SF-36 instruments were mapped to the International Classification of Functioning, Disability and Health (ICF). The PRISM and SCI-SET were evaluated using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist. Results: Two spasticity-specific, five generic, and four preference-based measures were identified. ICF mapping and the COSMIN checklist supported the use of the PRISM and SCI-SET in SCD. The SF-36 is considered the most useful generic measure; disability-adapted versions may be more acceptable but further studies on psychometric properties are required. The SF-36 can be converted to a preference-based measure (SF-6D), or alternatively the EQ-5D can be used. While no measures specific to caregivers of people with SCD were identified, the Caregiver Burden Scale and the Zarit Burden Interview are considered suitable. Conclusion: Recommended measures include the PRISM and SCI-SET (condition-specific), SF-36 (generic), and Caregiver Burden Scale and Zarit Burden Interview (caregiver burden). Consideration should be given to using condition-specific and generic measures in combination; the PRISM or SCI-SET combined with SF-36 is recommended.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD , 2020. Vol. 43, no 6, p. 813-823
Keywords [en]
Muscle spasticity; Spinal cord diseases; Spinal cord injuries; Patient reported outcome measures; Health-related quality of life
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-173082DOI: 10.1080/10790268.2019.1575533ISI: 000607097100004PubMedID: 30758270OAI: oai:DiVA.org:liu-173082DiVA, id: diva2:1524151
Note

Funding Agencies|Medtronic, Inc.Medtronic

Available from: 2021-01-31 Created: 2021-01-31 Last updated: 2021-01-31

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Division of Prevention, Rehabilitation and Community MedicineFaculty of Medicine and Health SciencesDepartment of Rehabilitation Medicine
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