The effective prevention and management of secondary health conditions are of paramount importance to persons living long-term with spinal cord injury (SCI) in order to enhance community participation and quality of life (QoL). To achieve this goal, it is critical that we utilize appropriate outcome tools to illustrate their impact.
Although accurate descriptions of SHC impact are important to help guide the direction of resources and evaluation of therapies, there are several clinical, theoretical and measurement issues that need to be accounted for. In addition to the lack of clarity of what constitutes QoL, one of the main challenges of examining secondary health condition impact is to help discern factors that are specifically associated with the secondary health condition (i.e., symptoms), and not necessarily with the SCI itself. A particular condition may impact globally on QoL or may only do so on a specific domain of functioning. As such, secondary health condition impact on QoL and participation should be assessed from several perspectives in order to be translated into applicable terms for service delivery. Another important consideration is to use outcome tools that are psychometrically valid for use in people with SCI (where possible).
Based on these considerations, a systematic literature review was conducted to identify which outcome tools have been used in the SCI literature to assess different secondary health conditions, and the following information was summarized:
- Whether the tools were found to be sensitive to secondary health condition impact;
- If there is psychometric data for use in the SCI population;
- Which QoL domain(s) each outcome tool assesses.
Based on these criteria, the appropriateness of tools and how to best use them to assess a specific QoL construct related to secondary health condition impact have been developed.
The purpose of the guidelines, however, is not to endorse any one outcome tool, but rather to provide prospective users with the necessary knowledge to critically appraise and select outcome tools that will best meet their research and/or clinical practice.