| 1. |
- Ertzgaard, Per, et al.
(författare)
-
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
- 2020
-
Ingår i: Journal of Spinal Cord Medicine (JSCM). - : TAYLOR & FRANCIS LTD. - 1079-0268 .- 2045-7723. ; 43:6, s. 813-823
-
Forskningsöversikt (refereegranskat)abstract
- 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.
|
|
| 2. |
- Scott Burns, Anthony, et al.
(författare)
-
Optimizing the Management of Disabling Spasticity Following Spinal Cord Damage: The Ability Network-An International Initiative
- 2016
-
Ingår i: Archives of Physical Medicine and Rehabilitation. - : W B SAUNDERS CO-ELSEVIER INC. - 0003-9993 .- 1532-821X. ; 97:12, s. 2222-2228
-
Tidskriftsartikel (refereegranskat)abstract
- Optimizing the treatment of disabling spasticity in persons with spinal cord damage is hampered by a lack of consensus regarding the use of acceptable definitions of spasticity and disabling spasticity, and the relative absence of decision tools such as clinical guidelines and concise algorithms to support decision-making within the broader clinical community. Many people with spinal cord damage are managed outside specialist centers, and variations in practice result in unequal access to best practice despite equal`need. In order to address these issues, the Ability Network an international panel of clinical experts was initiated to develop management algorithms to guide and standardize the assessment, treatment, and evaluation of outcomes of persons with spinal cord damage and disabling spasticity. To achieve this, consensus was sought on common definitions through facilitated, in-person meetings. To guide patient selection, an in-depth review of the available tools was performed and expert consensus sought to develop an appropriate instrument. Literature reviews are guiding the selection and development of tools to evaluate treatment outcomes (body functions, activity, participation, quality of life) as perceived by people with spinal cord damage and disabling spasticity, and their caregivers and clinicians. Using this approach, the Ability Network aims to facilitate treatment decisions that take into account the following: the impact of disabling spasticity on health status, patient preferences, treatment goals, tolerance for adverse events, and in cases of totally dependent persons, caregiver burden. (C) 2016 by the American Congress of Rehabilitation Medicine
|
|
