The development of the spinal cord injury participation and quality of life (PAR-QoL) tool-kit

Abstract

Purpose: Accurate descriptions of the impact of spinal cord injury (SCI)-related secondary health conditions (SHCs) on quality of life (QoL) are important to help guide the direction of resources and evaluation of therapies. However, selecting an appropriate outcome tool can be a challenge due to several clinical, theoretical and measurement issues. In order to help improve practices related to QoL measurement, a web-based Participation and QoL (PAR-QoL) tool-kit was designed to support researchers and clinicians with the outcome measure selection process.

Method: The content of the PAR-QoL website ( www.parqol.com ) was developed through a series of systematic reviews of the SHC literature. Outcome tools identified in the studies were classified using Dijker's (2005) theoretical framework.

Results: A total of 199 studies were identified and categorized across eight different SHCs. Measures from the studies were extrapolated, and details regarding their [1] sensitivity to SHC impact [2], psychometric properties for SCI and [3] underlying QoL constructs were summarized onto a website.

Conclusions: A better understanding of SHC impact on QoL will improve the quality of research, which in turn may provide better evidence for securing the necessary resources to help persons with SCI manage their health.