Development of the International Spinal Cord Injury Basic Data Set for informal caregivers.

Study Design: Mixed-methods, including expert consensus for initial development and a multi-center repeated measures design for field testing.

Objectives: To develop an International Spinal Cord Injury Basic Data Set for caregivers of individuals with spinal cord injury/disorder (SCI/D) for use in research and clinical care settings.

Setting: International, multi-disciplinary working group with field testing in five North American pediatric rehabilitation hospitals.

Methods: The data set was developed iteratively through meetings and online surveys with a working group of experts in pediatric and adult SCI/D rehabilitation and caregivers of individuals with SCI/D. Initial reliability was examined through repeat administration of a beta form with a sample of caregivers recruited by convenience. The sample was characterized with descriptive statistics. Intra-rater reliability of variables was assessed using Intra-Class Correlations.

Results: The beta test form included 27 items, covering 3 domains: (1) demographic information for persons providing care; (2) caregiver's allocation of time and satisfaction; and (3) perceived burden of caregiving. Thirty-nine caregivers completed both administrations. Mean time for completion was 10 min. There was moderate to excellent reliability for the majority of variables, but results indicated necessary revisions to improve reliability and decrease respondent burden. The final version of the data form contains 7 items and is intended for self-administration among informal caregivers of individuals with SCI/D across the lifespan.

Conclusions: The International SCI Basic Data Set for Informal Caregivers can be used to standardize data collection and reporting about informal caregivers for individuals with SCI/D to advance our understanding of this population and the data form has additional utility to screen for caregiver needs in clinical settings.