Abstract Information


Development of the International SCI Basic Data Set for Caregivers: Capturing data beyond the person with SCI/D

1Haywood C, 2Martin R, 3Mulcahey M, 4Pediatric I
1University of Southern California, Los Angeles, CA, 90089; 2Kennedy Krieger Institute, Baltimore, MD, USA; 3Thomas Jefferson University, Philadelphia, PA, USA; 4Multiple Institutions Represented, Multiple Cities Represented, , International

Objective: The heterogeneity inherent in the spinal cord injury or disorder (SCI/D) population requires collaboration to generate meaningful research outcomes. To address barriers associated with collaboration, an International Spinal Cord Society (ISCoS) workgroup established the International SCI Basic Data Sets (ISCIBDS) beginning in 2002 (1). These documents were intended to standardize collection and reporting of minimally required data on domains central to the research and care of patients with SCI/D. This project has grown to include 21 data sets, addressing different areas, aligned with the International Classification of Functioning, Disability, and Health (ICF). The ISCIBDS share variable names and definitions with NINDS SCI Common Data Elements (CDEs) and many of the ISCIBDS are included in the CDEs in whole or part. The purpose of this presentation is to describe conceptual issues related to the development of the ISCIBDS for Caregivers and outline a plan for validation.

Design/Method: A workgroup of international experts was convened, with oversight from the ISCIBDS Steering Committee, and tasked with developing a new data set to standardize the collection and minimal reporting of data on caregivers for children with SCI/D, which could have relevance for use across the lifespan, consistent with the structure of existing data sets. The international workgroup included 18 professionals across disciplines and settings and four caregivers. A literature review of caregivers for chronic conditions and the collective experience of the workgroup informed design of the data set. Feedback was solicited from the committee for multiple iterations of the data set. The final data set will be approved by the ISCIBDS steering committee and released for field testing.

Results: The ISCISBDS for Caregivers contains demographic, socioeconomic, task-related, and experiential data specific to caregivers that can be used to better describe the population and understand needs. Specific prompts include questions to elicit information about the network of caregivers for the person with SCI/D, roles and responsibilities of caregivers, and probes for personal satisfaction and perceived burden of caregiving, which have been associated with poorer outcomes for persons with SCI/D (2,3). From a research perspective, it captures minimal basic data required for relevant study, and it is a clinical tool to screen for at-risk caregivers. Given the intent and purpose of the ISCIBDS, several other domains were also identified to be of interest and relevance, such as family functioning and personal and environmental factors (4,5), but ultimately, those were thought to be beyond the scope of the basic data set and should be considered for an Extended Data Set. It is recommended that the ISCIBDS for Caregivers is administered with other data sets to provide a more complete reflection of care dyads.

Conclusion: Development of a standardized data set for caregivers is a necessary step to understand the population and improve long-term outcomes for persons with SCI/D. Through an iterative process, the workgroup has established the ISCIBDS for Caregivers to be used in clinical and research settings.

Support: Rick Hansen Institute


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