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PAR-QoL Blog

Aug 03, 2012 at 1:36 PM

Outcome Measure Resources

Pen and paper

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: 

Body Function / Structure;

Activity;

Participation;

Quality of Life;

Environment

 

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!

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Aug 08, 2012 at 10:23 AM

August - Monthly Quality of Life (QoL) and Spinal Cord Injury (SCI) Articles

1) Beauregard, L., Guindon, A., Noreau, L., Lefebvre, H., & Boucher, N. (2012). Community Needs of People Living With Spinal Cord Injury and Their Family. Topics in Spinal Cord Injury Rehabilitation, 18(2), 122-125.

2) Brown, S., Saunders, L., & Krause, J. (2012). Racial disparities in depression and life satisfaction after spinal cord injury: A mediational model. Topics in Spinal Cord Injury Rehabilitation, 18(3), 232-240.

3) Cook, K. F., Bamer, A. M., Amtmann, D., Molton, I. R., & Jensen, M. P. (2012). Six patient-reported outcome measurement information system short form measures have negligible age- or diagnosis-related differential item functioning in individuals with disabilities. Archives of Physical Medicine and Rehabilitation, 93(7), 1289-1291

4) Dickson, A., O'Brien, G., Ward, R., Flowers, P., Allan, D., & O'Carroll, R. (2012). Adjustment and coping in spousal caregivers following a traumatic spinal cord injury: an interpretative phenomenological analysis. Journal of Health Psychology, 17(2), 247-257.

5) Glassel, A., Raucha, A., Selb, M., Emmenegger, K., Luckenkemper, M., & Escorpizo, R. (2012). A case study on the application of International Classification of Functioning, Disability and Health (ICF)-based tools for vocational rehabilitation in spinal cord injury. Work: Journal of Prevention, Assessment & Rehabilitation, 41(4), 465-474.

6) Griffiths, H. C., & Kennedy, P. (2012). Continuing with life as normal: Positive psychological outcomes following spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 18(3), 241-252.

7) Kennedy, P., Smithson, E. F., & Blakey, L. C. (2012). Planning and Structuring Spinal Cord Injury Rehabilitation: The Needs Assessment Checklist. Topics in Spinal Cord Injury Rehabilitation, 18(2), 135-137.

8) Kosma, M., Ellis, R., & Bauer, J. J. (2012). Longitudinal changes in psychosocial constructs and physical activity among adults with physical disabilities. Disability and Health Journal, 5(1), 1-8.

9) Lindwall, J., Russell, H., Kelly, E., Klaas, S., Mulcahey, M., Betz, R., & Vogel, L. (2012). Coping and participation in youth with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 18(3), 220-231.

10) Marti, A., Reinhardt, J. D., Graf, S., Escorpizo, R., & Post, M. W. M. (2012). To work or not to work: Labour market participation of people with spinal cord injury living in Switzerland. Spinal Cord, 50(7), 521-526.

11) Nicholls, E., Lehan, T., Plaza, S. L., Deng, X., Romero, J. L., Pizarro, J. A., & Carlos Arango-Lasprilla, J. (2012). Factors influencing acceptance of disability in individuals with spinal cord injury in Neiva, Colombia, South America. Disability and rehabilitation, 34(13), 1082-1088.

12) Perrier, M. J., Latimer-Cheung, A. E., & Ginis, K. A. M. (2012). An investigation of seasonal variation in leisure-time physical activity in persons with spinal cord injury. Spinal Cord, 50(7), 507-511.

13) Phang, S. H., Martin Ginis, K. A., Routhier, F., & Lemay, V. (2012). The role of self-efficacy in the wheelchair skills-physical activity relationship among manual wheelchair users with spinal cord injury. Disability & Rehabilitation, 34(8), 625-632

14) Sakellariou, D. (2012). Sexuality and disability: A discussion on care of the self. Sexuality and Disability, 30(2), 187-197.

15) Westerkam, D., Saunders, L. L., & Krause, J. S. (2011). Association of spasticity and life satisfaction after spinal cord injury. Spinal Cord, 49(9), 990-994.

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Aug 23, 2012 at 1:48 PM

The Paralympics! 6 Days to Go!

6 days to the 2012 Paralympic Games in London! 

Keep track at the official London 2012 website - here.

Profiles of athletes competing this year will become available soon but the page has highlighted some famous paralympic athletes.

Some examples of famous Canadian paralympians (we are a canadian site after all ;) include:

 

 

Paul Tingley - Sailing: Medal Tally - 1 gold, 1 silver

Chantal Benoit - Wheelchair basketball; Medal Tally - 3 gold, 1 bronze

Arnold Boldt - Athletics; Medal Tally - 7 gold, 1 silver

Viviane Forest - Goalball; Medal Tally - 2 gold

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