Searching for outcome tools can be a challenge. In addition to the Participation and Quality of Life (PAR-QoL) tool-kit, there are other sources/repositories available that provide details on different outcome tools.
Here are some other sources that are available on-line:
Spinal Cord Injury Rehabilitation Evidence (SCIRE):
The SCIRE Website (http://www.scireproject.com/), which summarizes the evidence in spinal cord injury (SCI) rehabilitation, also has an outcome measures section, which presents common measures in SCI rehabilitation and describes their clinical utility and properties. Various tools are organized under four main categories:
Patient-reported outcome and quality of life instruments database (PROQOLID):
The purpose of PROQOLID (http://www.proqolid.org/) is to facilitate the selection process of patient-reported outcome measures in clinical research. The project’s purpose is to provide all those involved in health care evaluation with a comprehensive and unique source of information on patient-reported outcomes and health-related quality of life measures available through the Internet. This site is not SCI specific but is a valuable resource for learning about various outcome tools, and presents opportunities for obtaining them.
To read about PROQOLID, an open access article is available through PubMed:
Emery MP, Perrier LL, Acquadro C. Patient-reported outcome and quality of life instruments database (PROQOLID): frequently asked questions. Health Qual Life Outcomes. 2005 Mar 8;3:12.
Database of Instruments for Resource-Use Measurement (DIRUM):
The DIRUM project (http://www.dirum.org/), is an open-access Database of Instruments for Resource Use Measurement. This may serve as a practical resource for health economists, as well as a means to facilitate further research in the area of resource-use data collection. Although not SCI specific, this resource may be of interest for those conducting cost-effectiveness studies or assessing the burden of care.
Do you know of other available resources? Let us know!