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

The Journal of Spinal Cord Medicine, 2020 · DOI: 10.1080/10790268.2019.1575533 · Published: January 1, 2020

Spinal Cord Injury Patient Experience Neurology

Simple Explanation

This review focuses on spasticity in individuals with spinal cord damage (SCD) and aims to provide guidance on measuring health-related quality of life (HRQoL) in this population. The use of patient-reported outcome measures (PROMs) is important to fully understand the impact of spasticity on an individual's daily life and well-being, as there can be discrepancies between a patient's perception of spasticity and a clinician's findings. HRQoL measures and caregiver burden assessments are valuable for evaluating treatment effectiveness and are increasingly important to healthcare payers in determining the merits of new and existing treatments.

Study Duration

Not specified

Participants

Persons with spinal cord damage

Evidence Level

Review Article

Key Findings

1
Two spasticity-specific measures (PRISM and SCI-SET), five generic measures, and four preference-based measures were identified for assessing HRQoL in persons with spasticity following SCD.
2
The SF-36 is considered the most useful generic measure, but disability-adapted versions may be more suitable, although further research is needed.
3
The Caregiver Burden Scale and the Zarit Burden Interview are considered suitable for assessing caregiver burden in caregivers of people with SCD, although no measures are specifically designed for this population.

Research Summary

This review identified and evaluated patient-reported outcome measures (PROMs) suitable for assessing the impact of spasticity following spinal cord damage (SCD). Condition-specific (PRISM, SCI-SET), generic (SF-36), and preference-based (SF-6D, EQ-5D) measures were considered, along with measures of caregiver burden (Caregiver Burden Scale, Zarit Burden Interview). The review recommends considering a combination of condition-specific and generic HRQoL measures to comprehensively capture the patient's perspective, with the choice of instruments depending on the research question, available translations, and costs.

Practical Implications

Clinical Practice

Clinicians should consider using PROMs, especially condition-specific ones like PRISM or SCI-SET, alongside generic measures like SF-36, to get a comprehensive view of spasticity's impact on patients with SCD.

Research

Researchers should utilize a combination of condition-specific and generic HRQoL measures, considering preference-based measures if economic evaluation is needed. Further research is needed to validate adapted versions of SF-36 and caregiver burden measures specific to SCD.

Health Policy

Healthcare payers should consider HRQoL data from PROMs when evaluating new and existing spasticity treatments to ensure funding for interventions that demonstrate clear patient benefit.

Study Limitations

1
The review did not conduct a full systematic review of all aspects of HRQoL measures used in spasticity in SCD.
2
A formal Delphi process was not conducted to reach formal recommendations.
3
The evaluation was limited to adults with SCD, and findings cannot be extended to children with SCD or other etiologies of spasticity.

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