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.

Implications for Rehabilitation

• Assessing the impact of secondary health conditions on quality of life (QoL) in persons with spinal cord injury (SCI) is a challenge.

• A number of theoretical, measurement and clinical issues should be taken into account when selecting a QoL outcome tool.

• Developing innovative approaches to knowledge transfer should be guided by an implementation strategy to maximize successful uptake by targeted stakeholders.

• The participation and quality of life (PAR-QoL) website (www.parqol.com) is an on-line educational resource for clinicians and researchers working in the SCI field to promote better practices in the QoL outcome tool selection process.

Keywords::

• Outcome assessment
• spinal cord injuries
• social participation
• quality of life

Acknowledgements

We would like to thank Jean Hum, MSc and Aliza Panjwani, BA, for their contributions to the PAR-QoL project.

Declaration of Interest: This project was supported by the Ontario Neurotrauma Foundation (ONF) and the Réseau provincial de recherche en adaptation-réadaptation (REPAR) (Grant nos. 2010-KM-SCI-QOL-825; 2008-ONF-REPAR-601; 2007-ONF-REPAR-518); Salary support to Dr. SL Hitzig is provided by the Ontario Neurotrauma Foundation and the Rick Hansen Institute (Grant no. 2010-RHI-MTNI-836); Additional support was provided by the Toronto Rehabilitation Institute, which receives funding under the Provincial Rehabilitation Research Program from the Ministry of Health and Long-Term Care in Ontario. The views expressed do not necessarily reflect those of the Ministry. The authors report no conflict of interest.