Blog Archives

PAR-QoL Blog

Jan 04, 2012 at 4:57 PM

Welcome to our blog!

Welcome to the Par-QoL site's first blog entry! 

We hope this blog will serve as an informative source on exciting developments in the field of spinal cord injury (SCI).  This may include commenting on research articles, conferences and other important meetings, or on stories that have hit the mainstream media.

If you have something that you would like to share related to advancements in our field (upcoming conference, research findings, etc.), please send us an email.  We want to hear from you.

Thank you for your interest and hope that you will visit often and explore our site!

Sincerely yours,

The Par-QoL team

   

 

 

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Jan 10, 2012 at 3:09 PM

RNL Index Validated for SCI

The Reintegration to Normal Living (RNL) Index [1] has been validated for Spinal Cord Injury (SCI).

Members of our Par-QoL team have just published an article in the Archives of Physical Medicine and Rehabilitation validating the RNL Index for community-dwelling persons with traumatic SCI [2]. 

The RNL is a subjective measure of community participation, which has been validated for multiple impairment groups, such as stroke [3]. 

The RNL is used by the Canadian Institute for Health Information (CIHI), which is an independent not-forprofit organization that provides essential data and analysis of Canada’s health system and the health of Canadians. It is a part of their National Rehabilitation Reporting System (NRS) follow-up data set.

We feel that the RNL is a promising tool for both clinicians and researchers.

References:

  1. Wood-Dauphinée SL, Opzoomer MA, Williams JI, Marchand B, Spitzer WO. Assessment of global function: the Reintegration to Normal Living Index. Arch Phys Med Rehabil 1988;69:583-90

  2. Hitzig SL, Romero Escobar EM, Noreau L, Craven BC. Validation of the Reintegration to Normal Living Index for community-dwelling persons with chronic spinal cord injury. Arch Phys Med Rehabil 2012; 93: 108-14

  3. Daneski K, Coshall C, Tilling K, Wolfe CDA. Reliability and validity of a postal version of the Reintegration to Normal Living Index, modified for use with stroke patients. Clin Rehabil 2003;17:835-9.

 

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Jan 19, 2012 at 3:34 PM

Spotlight on Canadian Researcher

 

Came across this interesting media report on a Canadian Researcher working in the field of spinal cord injury.

This excerpt and video taken from the Brock University Website:

Spinal cord injuries alter lives; maximizing independence through the little things can make a big difference. 

David Ditor, associate professor of Kinesiology, and his lab was featured in a CHCH TV segment “Spinal rehab lab helps Brock researchers.”

His research focuses on the incremental improvements to physical conditioning for people with spinal cord injuries to reduce the prescence of secondary ailments. 

Through his research in spinal cord injuries he has developed numerous ties to Rick Hansen, which earned him a spot as a medal bearer on the St. Catharines stretch of the Rick Hansen 25th Anniversary Relay. 

His dedication to spinal cord research has also gained recognition, and will see him featured by CTV as one of 25 difference makers in spinal cord research. 

 

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Jan 24, 2012 at 10:48 AM

Interesting Paper on Secondary Health Conditions

Recommended Read!

An interesting advance online publication [1] has come out in the journal 'Spinal Cord' - which provides a definition and model for understanding factors that are related to secondary health conditions (SHC)s as individuals age with a disability and discusses the implications of the model for the assessment of SHCs.  It also discusses implications for developing interventions that minimize their frequency, severity and negative effects on the quality of life of individuals aging with SCI and other disabilities. 

As with quality of life, there is a need for some clarity on what constitutes a SHC after SCI, and this article provides some good suggestions for consensus.

  1. Jensen MP, Molton IR, Groah SL, Campbell ML, Charlifue S, Chiodo A, Forchheimer M, Krause JS, Tate D. Secondary health conditions in individuals aging with SCI: Terminology, concepts and analytic approaches. Spinal Cord 2011; 1-6.
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Jan 30, 2012 at 2:53 PM

Aging with SCI

As one ages with a spinal cord injury (SCI), there is some decline in physical functioning, which can partly arise from having to deal with secondary health conditions (SHC).

This video reports on some personal stories of aging with SCI, and illustrates how these individuals cope with SHCs in order to maintain good health and well-being.

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Feb 06, 2012 at 4:28 PM

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

Every month, we will provide you with a list of new articles that specifically covers topics surrounding QoL! A special thanks goes out to Maureen Pakosh, Information Resources Specialist at Toronto Rehab - University Health Network, who compiles a monthly list of relevant SCI journal articles for us.

Here are this month's articles relating to QoL and SCI:

  1. Bassett RL, Ginis KA. Risky business: the effects of individualized health information intervention on health risk perceptions and leisure time physical activity among people people with spinal cord injury. Disabil Health J 2011;3:165-76.

  2. Bergmark L, Westgren N, Asaba E. Returning to work after spinal cord injury: exploring young adults' early expectations and experience. Disabil Rehabili 2011;33:2553-8.

  3. Dajpratham P, Kongkasuwan R. Quality of life among the traumatic spinal cord injured patients. J Med Assoc Thai 2011;94:1252-9.

  4. Dickson A, Ward R, O'Brien G, Allan D, O'Carroll R. Difficulties adjusting to post-discharge life following a spinal cord injury: an interpretative phenomenological analysis. Psychol Health Med 2011;16:463-74.

  5. Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord 2011;49:928-34.

  6. Ginis KA, Latimer AE, Arbour-Nicitopoulos KP, Bassett RL, Wolfe DL, Hanna SE. Determinants of physical activity among people with spinal cord injury: a test of social cognitive theory. Ann Behav Med 2011;42:127-33.

  7. Hastings J, Robins H, Griffiths Y, Hamilton C. The differences in self-esteem, function, and participation between adults with low cervical motor tetraplegia who use power or manual wheelchairs. Arch Phys Med Rehabil 2011;92:1785-8.

  8. Hirsh AT, Braden AL, Craggs JG, Jensen MP. Psychometric properties of the community integration questionnaire in a heterogeneous sample of adults with physical disability. Arch Phys Med Rehabil 2011;92:1602-10.

  9. Krause JS, Saunders LL. Health, secondary conditions, and life expectancy after spinal cord injury. Arch Phys Med Rehabil 2011;92:1770-5.

  10. Murphy GC, Middleton J, Quirk R, De Wolf A, Cameron ID. Predicting employment status at 2 years' postdischarge from spinal cord injury rehabilitation. Rehabil Psychol 2011;56:251-6.

  11. Pernot HF, Lannem AM, Geers RP, Ruijters EF, Bloemendal M, Seelen HA. Validity of the test-table-test for Nordic skiing for classification of paralympic sit-ski sports participants. Spinal Cord 2011;49:935-41.

  12. Ramakrishnan K, Mazlan M, Julia PE, Abdul Latif L. Return to work after spinal cord injury: factors related to time to first job. Spinal Cord 2011;49:924-7.

  13. Weitzner E, Surca S, Wiese S, Dion A, Roussos Z, Renwick R, Yoshida K. Getting on with life: positive experiences of living with a spinal cord injury. Qual Health Res 2011;21:1455-68.

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Feb 20, 2012 at 10:06 PM

Measuring Depression in the Spinal Cord Injury (SCI) population

We are planning to update the PARQoL website (in the near future!) by adding depression as one of the secondary health conditions that presents challenges for people with SCI. In the meanwhile, click here to take a look at an article put forth by the Model Systems Knowledge Translation Centre (MSKTC) that highlights a few measures that have some evidence of reliability and validity for use within this population.

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Mar 05, 2012 at 2:33 PM

GTA Rehab Network - Best Practices Day, 2012

On Monday, February 28, our group presented a poster on the development of the PAR-QoL site at the GTA Rehab Network's Best Practices Day. This conference was hosted by the GTA Rehab Network, a conglomeration of both public- and community-based organizations involved in the provision and planning of rehabilitation services.

The theme for this year's conference was Building the Case for Rehab: Unlocking the Evidence. Many knowledgeable speakers took the stage and prompted the audience to think about what steps we, as healthcare professionals, should be taking right now to better our services for our consumers.  From the keynote panel discussion, a few important points were raised:

- Adequate access: Is the system providing enough rehab services based on what is needed?

- Evidence based care: Are rehabilitation interventions and treatments based on best evidence? Are they standardized?

- Timelines: Are rehabilitation services accessed in a timely way?

- What is the role of rehabilitation in substituting for acute care?

Overall, the conference was extremely informative, and we were glad to have the opportunity to present to raise awareness of our site. Click here to learn more about the wonderful speakers and view some of the presentations that were given!

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Mar 07, 2012 at 11:30 AM

The Importance of Wheelchair Skills Training - New Article!

Members of the Community Living and Quality of Life (COM-QoL) team, an inter-provincial research team of Quebec and Ontario researchers, have just published a new study on wheelchair skills. The study describes the manual wheelchair skill profiles of experienced users with spinal cord injury and their wheeled mobility (distance and speed) while considering their level of injury and age. Skill levels were evaluated using the wheelchair skills test (WST) and their mobility was measured in the participants’ own environment over a 7-day period, using a Cateye cycle computer.

The findings of this study illustrates that wheelchair skills training is associated with better mobility, which in turn can lead to improved community participation.

Lemay V, Routhier F, Noreau L, Phang SH, Ginis KA. Relationships between wheelchair skills, wheelchair mobility and level of injury in individuals with spinal cord injury. Spinal Cord. 2012;50:37–41.

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Mar 12, 2012 at 1:21 PM

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

Here is this month's list of monthly articles relating to QoL and SCI:

1) Balcazar FE, Kelly, EH, Christopher BK; Balfanz-Vertiz K. Using peer mentoring to support the rehabilitation of individuals with violently acquired spinal cord injuries. J Appl Rehabil Counsel 2011;42:3-11.

2) Chlan KM, Zebracki K, Vogel LC. Spirituality and life satisfaction in adults with paediatric onset spinal cord injury. Spinal Cord 2011;49:371-5.

3) Dasch KB, Russell HF, Kelly EH, Gorzkowski JA, Mulcahey MJ, Betz RR, Vogel LC. Coping in caregivers of youth with spinal cord injury. J Clin Psychol Med Settings 2011;18:361-371.


4) Dolbow DR, Gorgey AS, Cifu DX, Moore JR, Gater DR. Feasibility of home-based functional electrical stimulation cycling: Case report. Spinal Cord 2012;50:170-1.

5) Froehlich-Grobe K, Aaronson LS, Wasburn RA, et al. An exercise trial for wheelchair users: Project workout on wheels. Contemp Clin Trials 2012;33:351-63.

6) Groah SL, Charlifue S, Tate D, et al. Spinal cord injury and aging: challenges and recommendations for future research. Am J Phys Med Rehabil 2012;91:80-93.

7) Kelly EH, Mulcahey MJ, et al. Psychosocial outcomes among youth with spinal cord injury and their primary caregivers. Top Spinal Cord Inj Rehabil 2012;18:67-72.

8) Kennedy P, Lude P, Elfström ML, Smithson E. Appraisals, coping and adjustment pre and post SCI rehabilitation: A 2-year follow-up study. Spinal Cord 2012;50:112-8.

9) Knight KH, Buchholz AC, Martin Ginis KA, Goy RE, SHAPE-SCI Research Group. Leisure-time physical activity and diet quality are not associated in people with chronic spinal cord injury. Spinal Cord 2011;49:381-5.

10) Krause JS, Terza JV, Erten M, Focht KL, Dismuke CE. Prediction of postinjury employment and percentage of time worked after spinal cord injury. Arch Phys Med Rehabil 2012;93:373-5.

11) Lemay V, Routhier F, Noreau L, Phang SH, Ginis KA. Relationships between wheelchair skills, wheelchair mobility and level of injury in individuals with spinal cord injury. Spinal Cord 2012;50:37-41.

12) Lin MR, Yu WY, Wang SC. Examination of assumptions in using time tradeoff and standard gamble utilities in individuals with spinal cord injury. Arch Phys Med Rehabil   2012;93:245-52.

13) Livneh HE, Martz E. The impact of perceptions of health control and coping modes on negative affect among individuals with spinal cord injuries. J Clin Psychol Med Settings;18:243-56.

14) Migliorini CE, New PW, Tonge BJ. Quality of life in adults with spinal cord injury living in the community. Spinal Cord 2010;49:365-70.

15) Ottomanelli L, Sippel JL, Cipher D, Goetz L. Factors associated with employment among veterans with spinal cord injury. J Vocat Rehabil 2011;34:141-50.

16) Saebu M, Sorensen M. Factors associated with physical activity among young adults with a disability. Scand J Med Sci Sports 2011;21:730-8.

17) Saunders LL, Krause JS. Behavioral factors related to fatigue among persons with spinal cord injury. Arch Phys Med Rehabil 2012;93:313-8.

18) Saunders LL, Krause JS, Focht KL. A longitudinal study of depression in survivors of spinal cord injury. Spinal Cord 2012;72-7.

19) Stroud MW, Bombardier CH, Dyer JR, Rimmele CT, Esselman PC. Preinjury alcohol and drug use among persons with spinal cord injury: implications for rehabilitation. J Spinal Cord Med 2011;34:461-72.

20) Vall J, Costa CM, Pereira LF, Friesen TT. Application of International Classification of Functioning, Disability and Health (ICF) in individuals with spinal cord injury. Arq Neuropsiquiatr 2011;69:513-8.

21) Weitzner E, Surca S, Wiese S, et al. Getting on with life: positive experiences of living with a spinal cord injury. Qual Health Res 2011;21:1455-68.

22) Wessels KK, Broglio SP, Sosnoff JJ. "Concussions in wheelchair basketball. Arch Phys Med Rehabil 2012;93:275-8.

23) Wijesuriya N, Tran Y, Middleton J, Craig A. Impact of fatigue on the health-related quality of life in persons with spinal cord injury. Arch Phys Med Rehabil 2012;93:319-24.

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Mar 19, 2012 at 3:26 PM

Quantitative or Qualitative? How to ask, that is the question!

A brief one-page summary has just been published in the Academic Medicine: Journal of the Association of American Medical Colleges, which provides a concise overview of the differences between quantitative and qualitative methodologies.

Question mark Question markQuestion mark

This one pager is a handy starting point to help you make decisions on how to frame your next research study or program evalutation activity.

Reference:

Castillo-Page L, Bodilly S, Bunton SA. AM Last Page: Understanding Qualitative and Quantitative Research Paradigms in Academic Medicine. Acad Med. 2012 Mar;87:386.

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Mar 26, 2012 at 4:33 PM

SCI in Nepal - Follow-up of outcomes following initial rehabilitation

A new article in Spinal Cord details the challenges of living with a spinal cord injury (SCI) in Nepal, which is a less resourced country in terms of infrastructure and medical facilities.  Not surprisingly, community participation was a challenge for most of those who were using mobility devices.

 

 

Scovil CY, Ranabhat MK, Craighead IB, Wee J. Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord (2012) 50, 232–7;

 

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Apr 02, 2012 at 3:14 PM

Aging and Quality of Life - New Systematic Review


People with spinal cord injury (SCI), who are now living an average of 30–40 years post injury, face a unique array of physical, functional and environmental stressors.  Given that more people with SCI are living longer, a greater understanding of the changes in QoL over time is important to ensure that people with SCI are not only living longer but also living well.

The Spinal Cord Injury Rehabilitation Evidence (SCIRE) group has just published a systematic review on the influence of aging on subjective QoL after SCI, with a specific objective to identify changes in QoL as one ages with a SCI.

This advance online publication is now available on the journal 'Spinal Cord'.

Reference:

Sakakibara BM, Hitzig SL, Miller WC, Eng JJ and the SCIRE Research Team. An evidence-based review on the influence of aging with a spinal cord injury on subjective quality of life. Spinal Cord advance online publication, March 27, 2012; doi:10.1038/sc.2012.19

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Apr 11, 2012 at 12:48 PM

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

Here is this April's list of monthly articles relating to QoL and SCI

1) Augutis M, Anderson CJ. Coping strategies recalled by young adults who sustained a spinal cord injury during adolescence. Spinal Cord 2012;50:213-9.

2) Böthig R, Hirschfeld S, Thietje R. Quality of life and urological morbidity in tetraplegics with artificial ventilation managed with suprapubic or intermittent catheterisation. [Review]. Spinal Cord. 2012;50:247-51.

3) Cooper RA, Ferretti E, Oyster M, Kelleher A, Cooper, R. The relationship between wheelchair mobility patterns and community participation among individuals with spinal cord injury. Assistive Technology 2011;23:177-83.

4) de Groot S, Post MW, Bongers-Janssen HM, Bloemen-Vrencken JH, van der Woude LH. Is manual wheelchair satisfaction related to active lifestyle and participation in people with a spinal cord injury? Spinal Cord 2011;49:560-5.

5) Franceschini M, Pagliacci MC, Russo T, Felzani G, Aito S, Marini C; Italian Group for the Epidemiological Study of Spinal Cord Injuries. Occurrence and predictors of employment after traumatic spinal cord injury: The GISEM Study. Spinal Cord 2012;50:238-42.

6) Ginis KA, Hicks AL, Latimer AE, Warburton DE, Bourne C, Ditor DS, et al. The development of evidence-informed physical activity guidelines for adults with spinal cord injury. [Research Support, Non-U.S. Gov't Review]. Spinal Cord 2011;49:1088-96.

7) Othman AS, Engkasan, JP. Sexual dysfunction following spinal cord injury: The experiences of Malaysian women. Sex Disabil 2011;29:329-37.

8) Scovil CY, Ranabhat MK, Craighead IB, Wee J. Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord 2012;50:   232-37.

9) Shem K, Medel R, Wright J, Kolakowsky-Hayner SA, Duong T. Return to work and school: a model mentoring program for youth and young adults with spinal cord injury. [Research Support, Non-U.S. Gov't]. Spinal Cord 2011;49:544-48.

10) Tasiemski T, Brewer BW. Athletic identity, sport participation, and psychological adjustment in people with spinal cord injury.  Adapt Phys Activ Q 2011;28:233-50.

11) van Leeuwen CM, Post MW, Westers P, van der Woude LH, de Groot S, Sluis T, et al. Relationships between activities, participation, personal factors, mental health, and life satisfaction in persons with spinal cord injury. [Comparative Study Research Support, Non-U.S. Gov't]. Arch Phys Med Rehabil 2012;93:82-9

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Apr 18, 2012 at 11:20 AM

PLANAT - Accessibility at Your Fingertips (The Rick Hansen Foundation)

The Rick Hansen Foundation is an organization that regularly contributes to improving accessibility for people with disabilities through research and other initiatives.  Furthering the foundation's vision of a more 'inclusive world' is Planat, an easy-to-use online tool that allows you to discover and find ratings for accessible restaurants, shops, accommodations, attractions (and more!). It focuses on accessibility features from a mobility, sight and hearing perspective. To get started, all you need to do is create a free account or log in through Facebook on your desktop or mobile phone!

Some amazing features of Planat are:
- Activate location services on your phone in order to look up venues nearby
- Look up accessibility information around the world
- Filter results according to location, venue type and rating

accessibility icon

 Click here to learn more about Planat and its features! To access Planat, visit Planat.com.

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Apr 25, 2012 at 12:36 PM

Knowledge Translation: Turning Research Into Application

The importance of knowledge translation (KT) in healthcare is profound. In much the same way as thinking is not the same as doing, knowing the best practices guidelines for chronic disease management, for example, is not the same as applying them.  This gap between the literature and practical application at a patient’s bedside refers to a need for specialized resources and a group of experts to come together in order to put knowledge into action.

Knowledge Translation Canada (KT Canada) is a ‘network of Canadian experts in knowledge translation’ that joined forces to do exactly that. Their goals involve improving the communication of research results, developing a consensus on KT terminology and methods, and ensuring that KT efforts have a lasting impact across the continuum of care by engaging health professionals, community members and various other targeted stakeholders.

Check out their website and become more educated on the tools and resources available to help you learn more about the KT process!

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May 07, 2012 at 1:40 PM

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

May, 2012's List of Monthly Articles Examining QoL in Relation to SCI:

1) Atkins D, Noonan VK, et al. Secondary Complications in SCI Across the Continuum: Using Operations Research to Predict the Impact and Optimize Management Strategies. 2011 International Conference on Spinal Cord Medicine and Rehabilitation, Washington, DC. Topics in Spinal Cord Injury Rehabilitation 2012;18:57-60.

2) Bryden A, Bezruczko N. An ADL measure for spinal cord injury. J Appl Measure 2011;12:279-97.
 
3) Dickson A, O'Brien G, et al. Adjustment and coping in spousal caregivers following a traumatic spinal cord injury: An interpretative phenomenological analysis. J of Health Psychol 2012;17:247-57.
 
4) Fliess-Douer, O,  Vanlandewijck YC, et al. Most essential wheeled mobility skills for daily life: An international survey among paralympic wheelchair athletes with spinal cord injury. Arch Phys Med Rehabil 2012;93:629-35.

 
5) Gelis A, Daures JP, et al. Evaluating self-reported pressure ulcer preventive measures in persons with spinal cord injury using the revised Skin Management Needs Assessment Checklist: reliability study. Spinal Cord 2011; 49:653-8.
 
6) Martin Ginis KA,  Phang SH, Latimer AE, Arbour-Nicitopoulos KP. Reliability and validity tests of the leisure time physical activity questionnaire for people with spinal cord injury. Arch Phys Med Rehabil 2012;93:677-82.
 
7) Kavanagh E. Affirmation through disability: One athlete's personal journey to the London Paralympic Games. Perspect Public Health 2012;132:68-74.
 
8) Ketchum JM, Getachew MA. Early predictors of employment outcomes 1 year post traumatic brain injury in a population of Hispanic individuals. Neurorehabilitation 2012;30: 13-22.
 
9) Luthi H, Geyh S. The individual experience of functioning and disability in Switzerland--patient perspective and person-centeredness in spinal cord injury. Spinal Cord 2011;49: 1173-81.
 
10) Nooijen, C. F. J., S. De Groot, et al. A more active lifestyle in persons with a recent spinal cord injury benefits physical fitness and health. Spinal Cord 2012;50:320-23.
 
11) Parker M, Yau M. Sexuality, Identity and Women with Spinal Cord Injury. Sex Disabil 2012;30:15-27.

12)  Rutherford Owen T, and Marini I. Attendant Care and Spinal Cord Injury: Usage Patterns and Perspectives for Those with Life Care Plans. J Life Care Plan 2012;10:33-43.
 
13) Rutherford-Owen T, Marini, I. Life Care Plan Implementation Among Adults with Spinal Cord Injuries. J of Life Care Plan 2012;10: 5-20.

14) van Leeuwen, CM, Post MW, et al. Life satisfaction in people with spinal cord injury during the first five years after discharge from inpatient rehabilitation. Disabil Rehabil 2012;34: 76-83.

15)  Vassend O, Quale AJ, et al. Predicting the long-term impact of acquired severe injuries on functional health status: the role of optimism, emotional distress and pain. Spinal Cord 2011;49:1193-7.
 
16) Wu JC, Chen YC, et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: An assessment using the eleven-year comprehensive nationwide database of Taiwan. J Neurotrauma 2012;29:889-97.

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May 23, 2012 at 4:06 PM

PAR-QoL at the Rick Hansen Foundation I2012 Meeting

Members of the PAR-QoL team attended the Rick Hansen Foundation's Interdependence (I) 2012 meeting this past week in Vancouver, British Columbia (Canada). I2012 presented the latest findings from peer-reviewed researchers and clinicians in a comprehensive range of SCI-related subjects. Research teams and organizations from Denmark, Switzerland, Australia, China, UK, Belgium, USA and Canada shared their work and presented the newest treatments and technologies in the field.  Our group presented the findings from our pressure ulcer section in a poster format.  The conference abstracts and wrap-up are still available online at the Rick Hansen Foundation website and can be found here.

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Jun 04, 2012 at 5:09 PM

New Animal Studies Providing Promising Findings for Curing Paralysis

A few recent animal studies have come out recently providing some promising results for curing paralysis after spinal cord injury. 

One study has looked at the ability of zebra fish to heal their spinal cords after injury - Read here for more details, and another study has found a promising electrochemical treatment for helping to heal the spine and has been demonstrated in a rat model - Read here for more details.

 

Although this is preliminary work and may not be applied in humans in the immediate future, it is exciting to see that important basic research such as this is being highlighted in the mainstream media.

 

 

 

 

 

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Jun 15, 2012 at 2:49 PM

Small Sample Size? There's a Method for That!

A challenge that many of us face working in the field of spinal cord injury (SCI) is getting a large sample size for our projects.  This can especially be challenging for persons working on program evaluation activities, where the size of the sample may be determined by the number of people that the program can sustain.  A special communication has just come out in the in Archives of Physical Medicine and Rehabilitation about research designs for studies with small N's.  Given that conducting randomized controlled trials are not always feasible in a rehabilitation setting, it is important to be aware of available alternative methods that can supplement findings from traditional research designs and improve our ability to evaluate the effectiveness of treatments for individual patients.

Reference: Graham JE, Karmarkar AM, Ottenbacher KJ. Small sample research designs for evidence-based rehabilitation:issues and methods. Arch Phys Med Rehabil 2012 (Advanced online publication)

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Jun 19, 2012 at 9:53 AM

Luc Noreau - SCI Community Survey

Dr. Luc Noreau is a Full Professor at the Rehabilitation Department, Laval University, and Scientific Director of the Centre for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), Quebec City.  Dr. Noreau helps to lead the Participation and Quality of Life (PAR-QoL) tool-kit but also is involved in numerous other projects examining factors that promote successful community participation for persons with spinal cord injury (SCI).  One of the studies is the SCI Community Survey, which is aiming to be one of the largest survey studies in Canada that aims to better understand whether the most critical needs deemed by people with SCI are being met by existing health and social service programs.

Luc Noreau

 

 

                              See Dr. Noreau talk about the survey here

 

 

 

 

 

 

Dr. Luc Noreau

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Jun 25, 2012 at 10:31 PM

Facing Disability - New Website

A new website has come online that uses the faces and voices of people with spinal cord injuries (SCI) to answer questions about their life’s adjustments to SCI in short video segments.  The site has stories on more than 100 people featured in on-camera interviews for FacingDisability.com, a multimedia-rich website launched in 2011 by nine-time Emmy Award-winning Chicago broadcast producer Thea Flaum. In addition to personal stories, the site has experts in the field of SCI answering a number of questions about living with SCI.

Flaum and her assistants created a list of 48 questions and then conducted on-camera interviews, not just with people who suffered SCI, but also their mothers, fathers, siblings, spouses, children and experts in the field. 

The creation of FacingDisability.com is rooted in a personal tragedy in Flaum's family — in 1986, her stepdaughter, Vicki Hill, fractured her spinal column after diving into a swimming pool in Naperville.

A full account on the creation of FacingDisability.com can be read here at the Spinal Cord Injury Zone.

0 READER COMMENTS  [post comment]
Jul 08, 2012 at 10:52 PM

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

1) Augutis, M., & Anderson, C. J. (2012). Coping strategies recalled by young adults who sustained a spinal cord injury during adolescence. Spinal Cord, 50(3), 213-219.

2) Barbonetti, A., Cavallo, F., Felzani, G., Francavilla, S., & Francavilla, F. (2012). Erectile dysfunction is the main determinant of psychological distress in men with spinal cord injury. Journal of Sexual Medicine, 9(3), 830-836.

3) Belciug, M. P. (2012). Patients' perceptions of the causes of their success and lack of success in achieving their potential in spinal cord rehabilitation. International Journal of Rehabilitation Research, 35(1), 48-53.

4) Bombardier, C. H., Fann, J. R., Tate, D. G., Richards, J. S., Wilson, C. S., Warren, A. M., Heinemann, A. W. (2012). An exploration of modifiable risk factors for depression after spinal cord injury: Which factors should we target? Archives of Physical Medicine and Rehabilitation, 93(5), 775-781. 

5) Bothig, R., Hirschfeld, S., & Thietje, R. (2012). Quality of life and urological morbidity in tetraplegics with artificial ventilation managed with suprapubic or intermittent catheterisation. Spinal Cord, 50(3), 247-251.

6) Fliess-Douer, O., Vanlandewijck, Y. C., & Van der Woude, L. H. V. (2012). Most essential wheeled mobility skills for daily life: an international survey among paralympic wheelchair athletes with spinal cord injury. [Research Support, Non-U.S. Gov't]. Archives of Physical Medicine & Rehabilitation, 93(4), 629-635.

7) Kaiser, A., Reid, D., & Boschen, K. (2012). Experiences of Parents with Spinal Cord Injury. Sexuality & Disability, 30(2), 123-137.

8) Kennedy, P., Lude, P., Elfstrom, M. L., & Smithson, E. (2012). Appraisals, coping and adjustment pre and post SCI rehabilitation: a 2-year follow-up study. Spinal Cord, 50(2), 112-118.

9) Kullmann, L., & Toth, K. (2012). Exploration of quality-of-life goals in individuals with spinal cord injury. International Journal of Rehabilitation Research, 35(1), 85-87.

10) Martin Ginis, K. A., Phang, S. H., Latimer, A. E., & Arbour-Nicitopoulos, K. P. (2012). Reliability and validity tests of the leisure time physical activity questionnaire for people with spinal cord injury. Archives of Physical Medicine & Rehabilitation, 93(4), 677-682.

11) Norrbrink, C., Lindberg, T., Wahman, K., & Bjerkefors, A. (2012). Effects of an exercise programme on musculoskeletal and neuropathic pain after spinal cord injury - Results from a seated double-poling ergometer study. Spinal Cord, 50(6), 457-461.

12) Parker, M., & Yau, M. (2012). Sexuality, Identity and Women with Spinal Cord Injury. Sexuality & Disability, 30(1), 15-27.

13) Pershouse, K. J., Barker, R. N., Kendall, M. B., Buettner, P. G., Kuipers, P., Schuurs, S. B., & Amsters, D. I. (2012). Investigating changes in quality of life and function along the lifespan for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 93(3), 413-419.

14) Peter, C., Muller, R., Cieza, A., & Geyh, S. (2012). Psychological resources in spinal cord injury: a systematic literature review.  Spinal Cord, 50(3), 188-201

15) Peter, C., Rauch, A., Cieza, A., & Geyh, S. (2012). Stress, internal resources and functioning in a person with spinal cord disease. Neurorehabilitation, 30(2), 119-130.

16) Piatt, J., Compton, D. M., Sara Wells, M., & Bennett, J. L. (2012). Interventions that Effect Active Living among Individuals with Spinal Cord Injury. Therapeutic Recreation Journal, 46(1), 9-25.

17) Rohde, L. M., Bonder, B. R., & Triolo, R. J. (2012). Exploratory study of perceived quality of life with implanted standing neuroprostheses. Journal of Rehabilitation Research and Development, 49(2), 265-278.

18) Rutherford Owen, T., & Marini, I. (2012). Attendant Care and Spinal Cord Injury: Usage Patterns and Perspectives for Those with Life Care Plans. Journal of Life Care Planning, 10(4), 33-43.

19) Rutherford-Owen, T., & Marini, I. (2012). Life Care Plan Implementation among Adults with Spinal Cord Injuries. Journal of Life Care Planning, 10(4), 5-20.

20) Sale, P., Mazzarella, F., Pagliacci, M. C., Aito, S., Agosti, M., & Franceschini, M. (2012). Sport, free time and hobbies in people with spinal cord injury. Spinal Cord, 50(6), 452-456.

21) Tebbet, M., & Kennedy, P. (2012). The experience of childbirth for women with spinal cord injuries: An interpretative phenomenology analysis study. Disability and Rehabilitation: An International, Multidisciplinary Journal, 34(9), 762-769.

22) van Leeuwen, C. M. C., Kraaijeveld, S., Lindeman, E., & Post, M. W. M. (2012). Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 50(3), 174-187.

23) Yorkston, K. M., Bamer, A., Johnson, K., & Amtmann, D. (2012). Satisfaction with participation in multiple sclerosis and spinal cord injury. Disability and Rehabilitation: An International, Multidisciplinary Journal, 34(9), 747-753.

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Jul 18, 2012 at 2:05 PM

PAR-QoL Update - New Features on the Way!

The PAR-QoL site has now been online for over 8 months! Having started in November 2011, we are rolling out some new content and features to help with your understanding on quality of life (QoL) measurement in the field of spinal cord injury (SCI).

Here are a few features to look forward to for Fall 2012!

- Depression: A section on depression will be added to our secondary health conditions page, which will link to our outcome tools section to provided information on what QoL and participation measures have been used to assess the impact of depression.

- Physical Activity:  We will slowly be expanding our content to include other life domains.  Our first section will be on examining what tools have been used to measure the impact of physical activity on QoL and community participation.  Like our other sections on secondary health conditions, we will highlight which QoL tools have been used in this domain.

- Newsletter: In addition to our current news and events feature, a regular newsletter will be made available to subscribers discussing key issues and new advances in the field of SCI.

- Ask an Expert: This feature will allow visitors of the website to ask any questions regarding SCI to experts of the field through the website.

We hope the site has been useful and we are always looking for thoughts and feedback.  Please feel free to comment on our blog or send us an email with any feedback.

Thank you for your continued interest and we hope that you will keep visiting frequently!

Sincerely yours,

The PAR-QoL Team

PAR-QoL

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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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Sep 14, 2012 at 10:14 AM

Paralympics 2012

The Paralympics have come to an end, but going athletes are going home happy and proud! After 12 days of intense competition, the games closed on Sunday September 9, 2012 with a parade of Britain’s athletes on floats to Buckingham Palace and a concert with Coldplay, Rihanna and Jay-Z in the Olympic Stadium.  Details of the closing festivities can be found here.

Through all their hard work, Canadian Paralympic athletes came home with 31 medals; seven gold, fifteen silver and nine bronze. They ranked 15th for overall medals and 20th for gold medals! For the latest results click here

Paralympic athletes give all of us inspiration as they show us that determination and hard work does pay off!

Congratulations to all of the Paralympic athletes of 2012!

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Sep 19, 2012 at 3:49 PM

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

1) Araujo, C. (2012). We Always Have A Choice. PN, 66(8), 27-27.

2) Craig, A., Tran, Y., Wijesuriya, N., & Middleton, J. (2012). Fatigue and tiredness in people with spinal cord injury. Journal of Psychosomatic Research, 73(3), 205-210.

3) 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.

4) Geyh, S., Nick, E., Stirnimann, D., Ehrat, S., Muller, R., & Michel, F. (2012). Biopsychosocial outcomes in individuals with and without spinal cord injury: A Swiss comparative study. Spinal Cord, 50(8), 614-622.

5) Gustafsson, L., Mitchell, G., Fleming, J., & Price, G. (2012). Clinical utility of the Canadian Occupational Performance Measure in spinal cord injury rehabilitation. British Journal of Occupational Therapy, 75(7), 337-342.

6) Otis, C., Marchand, A., & Courtois, F. (2012). Risk factors for posttraumatic stress disorder in persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 18(3), 253-263.

7) Ottomanelli, L., Goetz, L. L., Suris, A., McGeough, C., Sinnott, P. L., Toscano, R., . . . Thomas, F. P. (2012). Effectiveness of supported employment for veterans with spinal cord injuries: results from a randomized multisite study. [Multicenter Study Randomized Controlled Trial Research Support, U.S. Gov't, Non-P.H.S.]. Archives of Physical Medicine & Rehabilitation, 93(5), 740-747.

8) Phillips, V. L., Hunsaker, A. E., & Florence, C. S. (2012). Return to work and productive activities following a spinal cord injury: The role of income and insurance. Spinal Cord, 50(8), 623-626.

9) Rozeboom, N., Parenteau, K., & Carratturo, D. (2012). Rehabilitation starts in the intensive care unit. Critical Care Nursing Quarterly, 35(3), 234-240.

10) Sakakibara, B. M., Hitzig, S. L., Miller, W. C., & Eng, J. (2012). An evidence-based review on the influence of aging with a spinal cord injury on subjective quality of life. Spinal Cord, 50(8), 570-578.

11) Wyndaele, J. (2012). Ageing with spinal cord lesion permits a good quality of life! Spinal Cord, 50(8), 569-569.

12) Wu, J. C., Chen, Y. C., Liu, L., Chen, T. J., Huang, W. C., Cheng, H., & Su, T. P. (2012). Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 29(5), 889-897.

13) Zupnik, B. (2012). Granting HOPE. PN, 66(8), 48-53.  

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Sep 26, 2012 at 3:05 PM

The SCIRehab Project

There is a very interesting on-going project examining the rehabilitation process.

Often research looks at rehabilitation of spinal cord injury (SCI) as a whole rather than specifics such as therapy interventions, medical procedures, patient education, or counseling. The SCIRehab project uses practice-based evidence (PBE) research to identify which rehabilitation interventions are associated with positive outcomes in randomized controlled trials (RCTs). The project provides information on all rehabilitation disciplines and also adds to guidelines for clinical decision-making. Including 1,200 participants having SCI in 6 varying US inpatient rehabilitation facilities, the SCIRehab project allows clinicians to document their interventions in handheld digital assistants after seeing their patients. After characteristics of the patient, injury and treatment are taken from these records, process elements  will be related to outcomes.

To learn more about this interesting work, visit the SCIRehab's homepage or read up on their work-to-date (below):

Papers from the project:

1. Group physical therapy during inpatient rehabilitation for acute spinal cord injury: findings from the SCIRehab Study.

2. The SCIRehab project: social work and case management. Social work and case management treatment time during inpatient spinal cord injury rehabilitation.

3. The SCIRehab project: treatment time spent in SCI rehabilitation. Nursing bedside education and care management time during inpatient spinal cord injury rehabilitation.

4. The SCIRehab project: treatment time spent in SCI rehabilitation. Psychology treatment time during inpatient spinal cord injury rehabilitation.

 5. The SCIRehab project: treatment time spent in SCI rehabilitation. Speech-language pathology treatment time during inpatient spinal cord injury rehabilitation: the SCIRehab project.

6. The SCIRehab project: treatment time spent in SCI rehabilitation. Therapeutic recreation treatment time during inpatient rehabilitation.

7. The SCIRehab project: treatment time spent in SCI rehabilitation. Occupational therapy treatment time during inpatient spinal cord injury rehabilitation.

8. The SCIRehab project: treatment time spent in SCI rehabilitation. Physical therapy treatment time during inpatient spinal cord injury rehabilitation.

9.The SCIRehab project: treatment time spent in SCI rehabilitation. Inpatient treatment time across disciplines in spinal cord injury rehabilitation.

10. The SCIRehab project: analyzing multidisciplinary inpatient spinal cord injury rehabilitation treatment--second phase.

11. SCIRehab: a model for rehabilitation research using comprehensive person, process and outcome data.

12. SCIRehab Project series: the social work/case management taxonomy.

13. SCIRehab Project series: the supplemental nursing taxonomy.

14. SCIRehab Project series: the psychology taxonomy.

15. SCIRehab Project series: the speech language pathology taxonomy.

16. SCIRehab Project series: the therapeutic recreation taxonomy.

17. SCIRehab Project series: the occupational therapy taxonomy.

18. SCIRehab Project series: the physical therapy taxonomy.

19. Clinical taxonomy development and application in spinal cord injury research: the SCIRehab Project.

20. New approach to study the contents and outcomes of spinal cord injury rehabilitation: the SCIRehab Project.

21. The SCIRehab Project: classification and quantification of spinal cord injury rehabilitation treatments. Preface.

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Oct 03, 2012 at 10:34 AM

Journal of Spinal Cord Medicine - Special Issue: 5th National SCI Conference

The Journal of Spinal Cord Medicine has just published a special issue covering the 5th National Spinal Cord Injury Conference that will be occurring on October 18 - 20, 2012 in Toronto, Ontario (CANADA). 

Many of the papers highlight the excellent contributions Canadian researchers make in the field of spinal cord injury.

Check out the journal:

The Journal of Spinal Cord Medicine.  Volume 35, Number 5, September 2012. 5th National Canadian Spinal Cord Injury Conference: Translating Neural Engineering and Novel Therapies. Editors: Donald Bodner and Carolann Murphy

Check out details on the conference here.

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Oct 15, 2012 at 10:28 AM

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

1)            Amtmann, D., Bamer, A. M., Cook, K. F., Askew, R. L., Noonan, V. K., & Brockway, J. A. (2012). University of Washington self-efficacy scale: a new self-efficacy scale for people with disabilities. Archives of Physical Medicine & Rehabilitation, 93(10), 1757-1765.

2)            Barone, S. H., & Waters, K. (2012). Coping and adaptation in adults living with spinal cord injury. Journal of Neuroscience Nursing, 44(5), 271-283.

3)            Geyh, S., Nick, E., Stirnimann, D., Ehrat, S., Michel, F., Peter, C., & Lude, P. (2012). Self-efficacy and self-esteem as predictors of participation in spinal cord injury-an ICF-based study. Spinal Cord, 50(9), 699-706.

4)            Kolakowsky-Hayner, S. A. (2012). Community based rehabilitation after neurologic injury. [Editorial]. NeuroRehabilitation, 31(1), 1.

5)            Pershouse, K. J., Barker, R. N., Kendall, M. B., Buettner, P. G., Kuipers, P., Schuurs, S. B., & Amsters, D. I. (2012). Investigating changes in quality of life and function along the lifespan for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 93(3), 413-419.

6)            Post, M. W., van Leeuwen, C. M., van Koppenhagen, C. F., & de Groot, S. (2012). Validity of the life satisfaction questions, the life satisfaction questionnaire, and the satisfaction with life scale in persons with spinal cord injury. Archives of Physical Medicine & Rehabilitation, 93(10), 1832-1837.  

7)            Simpson, L. A., Eng, J. J., Hsieh, J. T., Wolfe, D. L., & Spinal Cord Injury Rehabilitation Evidence Scire Research, T. (2012). The health and life priorities of individuals with spinal cord injury: a systematic review. [Research Support, Non-U.S. Gov't Review]. Journal of Neurotrauma, 29(8), 1548-1555.

8)            Van de Velde, D., Bracke, P., Van Hove, G., Josephsson, S., Devisch, I., & Vanderstraeten, G. (2012). The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home. [Empirical Study; Interview; Focus Group; Qualitative Study]. Disability and Rehabilitation: An International, Multidisciplinary Journal, 34(6), 491-502.

9)            Hess, M. J., & Hough, S. (2012). Impact of spinal cord injury on sexuality: Broad-based clinical practice intervention and practical application. [Review]. Journal of Spinal Cord Medicine, 35(4), 211-218.  

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Oct 22, 2012 at 4:51 PM

5th National Conference - Meeting Highlights

5th National SCI Conference

Members of the PAR-QoL team attended the 5th National Spinal Cord Injury Conference.  This exciting conference highlighted Canadian expertise in the field of SCI as well as from collegues around the world.

Exciting keynote speeches were provided by top experts in the field. 

Dr. John Steeves (founding director of ICORD) was presented with the Champion of Change Award for his tireless efforts and contributions to the field of SCI.  Congratulations to Dr. Steeves!

A number of new and exciting things were launched and leared at the conference.

First, the Rehabilitation Environmental Scan Atlas 'Capturing Capacity in Canadian SCI Rehabilitation' was launched at the conference.  The Atlas examines the complexities of SCI rehab, describes the current state of practice and maps the action required to standardize and transform practice by 2020. The Atlas is now available for downloading as a PDF at the Rick Hansen Institute:

Second, our group was alerted to clincial guidelines for the management of neurogenic bowel dysfunction after spinal cord injury.  These guidelines are available on-line at the Royal Nursing of Nursing website as a downloadable PDF.  We have also bookmarked these guidelines in our bowel dysfunction page for future reference.

The PAR-QoL group also presented two posters on work-to-date on the website and on the upcoming section on depression to be launched in the near future.

We congratulate the organizers of the conference for a successful meeting and look forward to attending the 6th National SCI Conference (2014)!

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Oct 30, 2012 at 3:36 PM

PAR-QoL - First Expert Spotlight with Dr. Vanessa Noonan

 Dr. Vanessa Noonan

Dr. Vanessa Noonan

The Participation & Quality of Life (PAR-QoL) Tool-Kit is proud to present our first expert spotlight session with Dr. Vanessa Noonan, Director of Research for the Rick Hansen Institute

Between October 25 and November 16 (2012), visitors to the PAR-QoL website may submit a question to Dr. Noonan to obtain her thoughts about spinal cord injury (SCI) and quality of life research (or other related research). Dr. Noonan’s answers to these questions will be posted on the PAR-QoL website sometime in December 2012. This is a unique opportunity for clinicians, students, researchers, community advocates and persons with SCI to gain insight and knowledge on the status of SCI and quality of life research from a leading expert in the field.  To learn more about Dr. Noonan and our spotlight event, click  here.

 

 

 

 

 

 

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Nov 15, 2012 at 2:07 PM

First atlas of Canadian spinal cord injury rehabilitation services determines the need for lifelong clinical care

 
To read the full press release, go to the  University Health Network's webpage

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Nov 21, 2012 at 9:28 AM

Q & A with the PAR-QoL Team

We recently held an expert spotlight event on the PAR-QoL Website with Dr. Vanessa Noonan, Director of Research at the Rick Hansen Institute.  Dr. Noonan will be posting her responses to those questions in a few weeks but we also received a few questions specific to the PAR-QoL site. 

Here are the questions and our answers:

Question:  Par-QOL is a wonderful tool for SCI social researchers! But depression is a frequent accompaniment to SCI which obviously affects QOL. Why is it not listed as a secondary health condition please, with a whole section of the website devoted to it? Thanks very much for considering adding this to your already highly informative measurement tools here.

Answer:  Thank you for your kind remarks!  We agree that depression is an important secondary health condition that has implications for quality of life.  The core content of the PAR-QoL site was developed through a series of systematic literature reviews on a host of secondary health conditions.  However, because of the large scope of the work, we started our reviews on the listed conditions on the site.  We will be adding a section on depression (targeted for 2013) as well as other life domains (i.e., physical activity).  We have an upcoming publication in Disability and Rehabilitation which discusses the development of the website, which goes into depth our rationale and steps for building the website.

Question: Can you post how to get a copy of the Community Activities Checklist (CAC)or speak to its authors about its psychometric properties? Thanks very much!

Answer: Due to copyright and technical limitations with the website, we do not post any outcome tools but do strive to help people on where to find them.  A full copy of the CAC is available in the following article:

Kemp BJ, Ettelson D. Quality of life while living and aging with a spinal cord injury and other impairments. Top Spinal Cord Inj Rehabil. 2001;6:116–27.

Please keep sending in your questions and comments about the site.  We want to hear from people on what we can do to better serve your needs!

The PAR-QoL Team!

Question markPAR-QoL logo

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Nov 26, 2012 at 3:14 PM

Canadian Paraplegic Association changes its name to Spinal Cord Injury Canada

The Canadian Paraplegic Association (CPA) first started in 1945 to serve individuals who had returned home from WWII with spinal cord injuries (SCI). There were also a number of veterans with tetraplegia who did not live past a year. For this reason a group of men came together to form the CPA to help attain independence, self-reliance and community participation.

The CPA has recently changed its name. On November 11, 2012, this leading organization decided that they will be called Spinal Cord Injury Ontario to reflect its service to not only people with paraplegia, but all with SCI  as well. Since the initial formation of the group many great strides have been made in research, clinical practice and information exchange.

We commend Spinal Cord Injury Canada for its continued efforts towards improving the quality of life of persons living with SCI!

 SCI Ontario Logo

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Dec 11, 2012 at 10:57 AM

Happy Holidays from the PAR-QoL Team!

In our final blog posting of 2012, we thought we would end with some reflections on our work on the PAR-QoL website.  It has been an exciting year with a lot accomplished!  The website has been fully on-line for one year (core content + the blog, news & events, expert spotlight features), and have plans for 2013 to add content and features in order to deliver you the information you need to help with your work!

Since April 2012, the number of visitors to the site has grown (see graph below of visitors).  In total, we have had over 300,000 hits with about 24,000 of those being unique visitors (first time and validated visitors to the site).

PAR-QoL Visitors by Month

We hope that this growth can continue and appreciate your time in visiting the site and spreading the word about it to your colleagues.

We are also happy to report we have an article in press in 'Disability and Rehabilitation' on the development of the PAR-QoL website.  This discusses the rationale behind developing the content and the steps taken for developing the website: 

Hitzig SL, Noreau L, Balioussis C, Routhier F, Kairy D, Craven BC.The development of the spinal cord injury participation and quality of life (PAR-QoL) tool-kit. Disabil Rehabil.  IN PRESS.

The article may serve as a useful template for your own knowledge mobilization projects.

We hope that we can continue to be a valued knowledge resource in the field of spinal cord injury and quality of life.

As always, feel free to write in to share your thoughts and comments or to ask questions.

Wishing you all the best for 2013,

Sincerely yours,
The PAR-QoL Team

PAR-QoL

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Jan 11, 2013 at 3:46 PM

Handy Tool to Electronically Score and Classify a Spinal Cord Injury

A new website is on-line which provides a tool that uses the raw test scores determined by the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSI) to electronically score and classify a spinal cord injury (SCI).

The site has been developed by the Rick Hansen Institute in partnership with the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCOS).

Check it out at www.ISNCSCIalgorithm.com

Calculate

 

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Jan 16, 2013 at 11:52 AM

Rehabilitation Measures Database

The Rehabilitation Measures Database (www.rehabmeasures.org) was developed to help clinicians and researchers identify reliable and valid instruments used to assess patient outcomes during all phases of rehabilitation. The database provides evidence-based summaries that include:

  • Concise descriptions of each instrument’s psychometric properties
  • Instructions for administering/scoring each assessment (along with a bibliography with citations linked to PubMed abstracts).
  • Whenever possible, they have also included a copy of the instrument for visitors to the site to download or information on where to obtain the instrument.

This site has reviewed more than 70 instruments (including some for quality of life and social participation) for use with stroke patients and they are adding spinal cord injury (SCI) and traumatic brain injury (TBI) criteria to reviews, with reported plans to expand the database to include several other diagnoses over the next few years.

This is an excellent resource for clinicians/researchers working in the field of rehabilitation to help with selecting and identifying relevant outcome measures for their research/program evaluation and/or clinical practice.  Check out the site here.

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Jan 30, 2013 at 12:27 PM

A Unique Approach to Providing Care to People with SCI: The Kitchener Mobility Clinic

In the lastest issue of Neuromatters (Winter 2012, Issue 20 - downlable PDF available here), the newsletter put out by the Ontario Neurotrauma Foundation, there is a spotlight on the Kitchener Mobility Clinic.  The Mobility Clinic is an inter-professional clinic that involves a physician, nursing, chiropractic, Occupational Therapy, Social Work and Pharmacy.

For those living with a spinal cord injury (SCI), inadequate access and support to primary care is a major problem. 

There are a number of barriers to accessing primary care, including inaccessible physician offices, lack of understanding and experience by staff and physicians on the needs of those living with SCI, problematic settings (i.e., heightened examination tables, inadequate space in hallways/waiting rooms), and flexibility with scheduling appointments around transportation availability make accessing care a challenge.

The Kitchener Mobility Clinic is an inter-professional clinic that involves a physician, nursing, chiropractic, Occupational Therapy, Social Work and Pharmacy. The clinic serves to provide additional care to rostered patients of the Centre of Family Medicine in Kitechener Ontario (Canada) who have any sort of mobility issue.  Some features services provided include having a more accessible examination room equipped with an electronic lowering exam table, overhead ceiling lift or just more time for a detailed assessment.  The Mobility Clinic staff has also seen patients in their own homes/living environment for assessment.

Given that many people with SCI are using hospital emergency rooms for primary care, there is a need for more primary care delivery models, like the Kitchener Mobility Clinic, that can better meet the health needs of people with SCI.

Below are some recent articles that highlight some of the challenges to primary care for people with SCI:

Ramp

 

 

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Feb 25, 2013 at 3:11 PM

Resources for spinal cord injury (SCI) professionals, and for people living with SCI and their families

It is amazing the knowledge and resources that have become available on-line for the spinal cord injury (SCI) community. One of the goals of the PAR-QoL site is to highlight websites that can help support clinical practice, and help people with SCI and their families participate in their communities. Below are a few resources that you may find useful.

The International Network of SCI physiotherapists (SCIPT) is a not-for-profit initiative of physiotherapists worldwide. It is for physiotherapists working in the area of spinal cord injuries although other physiotherapists are welcome to join. See their site at: http://www.scipt.org/

The Caregiver Chronicles is a series of videos that feature interviews with caregivers, each of whom has a partner with some form of paralysis. Each caregiver's situation is different. Each has a unique set of challenges, hopes, strengths and solutions. These videos were produced by the Christopher Reeve Foundation. To see the videos, click here.

Pushrim is a social network and support resource for friends, families, and people living with SCI.

0 READER COMMENTS  [post comment]
Mar 20, 2013 at 2:03 PM

Pressure Ulcers and Spinal Cord Injury

Pressure sores are a most common seconday complication of spinal cord injury (SCI). E-learning resources about pressure ulcers and people living with SCI are now available for professionals working with the SCI population.

The Ontario Neurotrauma Foundation, in partnership with the Rick Hansen Institute, developed the Canadian Clinical Best Practice Guidelines for Pressure Ulcers. To download these guidelines as a PDF, click here

A new video on pressure ulcers and SCI is also available online.  This video was presented at the Back To School Conference held by Thompson Rogers and Spinal Cord Injury Canada.  You can see the video below or you can click here to see it. 

 


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Mar 21, 2013 at 10:23 AM

Get in Motion- Physical Activity Counseling for Canadians Living with a Spinal Cord Injury

Adults with spinal cord injury (SCI) who receive telephone-based counseling that focuses on making plans to be physically active and offers advice on overcoming the barriers to exercise are more likely to increase and maintain their physical activity levels. SCI Action Canada, with the support from the Rick Hansen Institute and the Ontario Neurotrauma Foundation, turned these results into an exercise counseling service for all Canadians living with SCI. Get in Motion, established in 2008, became the first-ever telephone based-activity counseling service for adults with SCI.

Get in Motion continues to be offered nationwide at no cost to clients, who receive six month of one-on-one telephone-based exercise counseling and access to physical activity resources. The trained exercise counselor tailors telephone sessions to meet clients' indivudal needs and level of motivation for physical activity. For more information or if you would like to enroll, please visit http://sciactioncanada.ca/get-in-motion.cfm or contact the Get in Motion team at 1-866-678-1966 or at motion@mcmaster.ca

0 READER COMMENTS  [post comment]
Apr 22, 2013 at 11:13 PM

E-Resources for SCI Health Professionals

It is amazing to see that more resources are readily becoming available for health professionals working in the field of spinal cord injury.   Apps, instructional videos, and guidelines are constantly coming online, which can inform best practices and lead to improved care.  We highlight two resources below, and have compiled the resources we have found over the past year on our links page

If you know of any good resources to help practitioners or people with SCI, email us at: info@parqol.com.

The Paralyzed Veterans of America have released a new free app for healthcare professionals using Ipads or Iphones that enables them to download e-books to help treat people with SCI.  The App lets people access the following Clinical Practice Guideline titles: Early Acute Management in Adults with Spinal Cord Injury; Preservation of Upper Limb Function Following Spinal Cord Injury; Respiratory Management Following Spinal Cord Injury; and Bladder Management for Adults with Spinal Cord Injury.  To read more about the app, click here.

In our January 30 blog entry, we discussed that people with SCI have challenges finding appropriate primary care once discharged from initial SCI rehabilitation.  One aid to help address this issue is a new on-line resource to help family physicians meet the needs of people with SCI. The Ontario Neurotrauma Foundation (ONF), in partnership with the University of Ottawa, has designed an e-learning resource (Caring for Persons with Spinal Cord Injury) for family physicians who are treating people with SCI or who are considering to treat people with SCI.  To read more about this e-resource, click here or visit the site by clicking here.

0 READER COMMENTS  [post comment]
May 01, 2013 at 2:58 PM

The Ontario Spinal Cord Injury Research Network (OSCIRN)

The Ontario Spinal Cord Injury Network (OSCIRN) is a collaborative network of clinicians and scientists, working together within the five Academic Health Science Centres, to facilitate the conduct of multi-centre clinical research on topics related to pre-hospital care, acute treatment, rehabilitation and community re-integration of individuals with a spinal cord injury.  The Network’s mandate is:


1. translational research
2. research across the continuum
3. integrated knowledge translation and implementation
4. integrated health economics
5. provision for “horizontal” & “vertical” reserach
6. provision for investigator and industry driven research

The network is supported by the Canadian Spinal Research Organization (CRSO) and the Ontario Neurotrauma Foundation.

The video below provides an overview of OSCIRN:


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May 09, 2013 at 12:18 PM

SCIREHAB Project - Phase III Published

The Journal of Spinal Cord Medicine has recently published the third phase of the SCIRehab Project, which is being led by Dr. Gale Whiteneck from the Craig Hospital, and was funded by National Institute on Disability and Rehabilitation Research in the United States Department of Education.

The aim of this project was to determine what in-patient rehabilitation treatment interventions are most strongly associated with positive outcomes in people with traumatic spinal cord injury (SCI).  They accomplished this through practice-based evidence (PBE) methodology, which is an observational approach that documented the details of the treatment process, and then related the natural variation in treatment to variation in outcomes.

The first phase of the SCIREHAB project developed the rehabiliation treatment taxonomy to describe the intervetion activities of seven disciplines (physical therapy, occupational therapy, therepeutic recreaction, speech language pathology, psychology, nursing and social work/case management).

G Whiteneck, M Dijkers, J Gassaway and DP Lammertse. The SCIRehab Project: classification and quantification of spinal cord injury rehabilitation treatments. Preface. J Spinal Cord Med 2009; 32(3):249–50.

The second phase of the SCIREHAB project described the nature of the rehabilitation process and determined which patient and injury characteristics expalined variation in the amount of treatment provided.

G Whiteneck and J Gassaway. SCIRehab: a test of practice-based evidence methodology. J Spinal Cord Med 2011; 34(2):129–30.

The third phase answers the question of which interventions are most strongly associated with positive outcomes, after controlling for patient and injury differences.  Some of the outcomes examined include function and residence at discharge and 1 year post-injury, rehospitalization and medical complication in the first year, and societal participation and life satisfaction at 1 year post-injury.

G Whiteneck, J Gassaway, M Dijkers, A Heinemann and SED Kreider. Relationship of patient characteristics and rehabilitation services to outcome following spinal cord injury. J Spinal Cord Med. 2012; 35(6):484–502.

The PAR-QoL team would like to congratulate Dr. Whiteneck and his team on an outstanding body of work that answers a number of important questions regarding the impact of in-patient rehabilitation!

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Jun 07, 2013 at 10:37 AM

Spinal Cord Essentials comes to PAR-QoL

The PAR-QoL team is excited to announce that Spinal Cord Essentials has come to our website.  Spinal Cord Essentials is a patient education initiative which aims help people through rehabilitation following spinal cord injury (SCI).

The project currently consists of 70 handouts which are one to four pages in length relating to various aspects of SCI rehabilitation. Many of the handouts have been included on secondary health conditions pages across the site.

On the PAR-QoL Secondary Health Conditions page, we have handouts on:

1) What is Spinal Cord Injury
2) My Diagnosis and Outcomes
3) 100,000 km Tune Up

On the bladder dysfunction page, we have handouts on:

1) Condom Catheters
2) Foley Catheters
3) Male Intermittent Catheterization
4) Female Intermittent Catheterizatio
5) Intermittent Catheterization Protocol
6) Urinary Tract Infections
7) Cleaning Your Drainage Bag
8) Bladder Supply Vendors

  Spinal Cord Essentials

 

On the bowel dysfunction page, we have handouts on:

1) My Bowel Care Program
2) Digital Stimulation
3) Stool Softeners and Laxatives
4) Diet and Bowel Management

 

On the autonomic dysreflexia page, we have handouts on:

1) Autonomic Dysreflexia
2) Orthostatic Hypotension

On the respiratory complications page, we have handouts on:

1) Lung volume augmentation       

We hope that the inclusion of Spinal Cord Essentials on our site will help to highlight this valuable resource for people with SCI and their families living in the community.  To see the entire Spinal Cord Essentials project, which has handouts on Mobility, Community Living, and other important resources, click here.

0 READER COMMENTS  [post comment]
Jul 28, 2013 at 1:25 PM

Nutrition and Spinal Cord Injury

The importance of nutrition post-spinal cord injury (SCI) is extremely important for maintaining health and well-being.  A number of resources have emerged to help people with SCI get tips about a healthy diet.

The first is a presentation by Vickeri Barton, RD, CD, Registered Dietitian, Associate Director of Nutrition and Services, Harborview Medical Center and Susie Kim, OTR/L, Licensed Occupational Therapist, Harborview Medical Center.  The video can be watched here.

There is also the Spinal cord injury (SCI). Evidence-based nutrition practice guideline, which can be viewed at the Agency for Healthcare Research and Quality website - click here.

Finally, there is a new book available on eating well post-SCI.  The details about the book can be viewed here.

Berries


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Aug 20, 2013 at 1:38 PM

Preliminary findings on the SCI Community are now available

The Spinal Cord Injury (SCI) Community Survey is the largest study of its kind to ever be done in Canada among people with SCI. The primary intent of the study is to confirm the most important SCI-specific needs of Canadians with SCI. It is also intended to determine how successfully the Canadian health and social services systems are meeting those needs.

This project is being led by Dr. Luc Noreau at the University of Laval, and is being funded by the Ontario Neurotrauma Foundation and The Rick Hansen Institute.

There is a report available on people with traumatic injuries and one for people with non-traumatic injuries (Both available in English and French).

See the details on the project website and see the reports (here).

 

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Sep 25, 2013 at 12:58 PM

6th National SCI Conference - October 2014

The 6th National Spinal Cord Injury Conference has a website put up to provide information on this upcoming event.

The theme for the conference is: Bioinformatics Inform SCI Rehabilitation

6th National SCI Conference

 

The 6th National SCI Conference organizing committee is putting together an exciting program featuring keynote addresses, podium and poster presentations, workshops and breakout sessions. Additional highlights will include a hands-on pre-course and a delegate reception


Key Themes for this year’s submission are:
• Biomarkers and Imaging Predictors of Rehabilitation Outcomes
• Rehabilitation Applications of Computational Science
• Data Mining and Interpretation
• Bioengineering for SCI Rehabilitation
• Epigenetics/Genetics/ Genomics for SCI
• Clinical Algorithms and Customized Care
• Rehabilitation Technology and Health Assessment
• Economics of Rehabilitation Service Delivery
• Novel Hardware and Software Solutions

The conference will start accepting abstracts in October 2013

 

0 READER COMMENTS  [post comment]
Oct 01, 2013 at 11:14 AM

PAR-QoL October Blog - Expert Spotlight with Dr. Brett Smith
Dr. Brett Smith

The PAR-QoL team is proud to present an expert spotlight event with

Dr. Brett Smith from Loughborough University, UK. 


Between October 1 and November 11 (2013), visitors to the PAR-QoL website may submit a question to Dr. Smith to obtain his thoughts about spinal cord injury (SCI) and quality of life research (or other related research).

 

 Dr. Smith will post his answers to selected questions on the PAR-QoL website sometime in December 2013 (date to be determined).

This is a unique opportunity for clinicians, students, researchers, community advocates and persons with SCI to gain insight and knowledge on the status of SCI and quality of life research from a leading expert in the field. 

To learn more about Dr. Smith and our spotlight event, click here.

Dr. Brett Smith

 

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Nov 22, 2013 at 10:36 AM

SCIRE Outcome Measures Version 4 Now Online

The Spinal Cord Injury Rehabilitation Evidence (SCIRE) project has just launched version 4 of its outcome measures section
SCIRE is a synthesis of the research evidence underlying rehabilitation interventions to improve the health of people living with SCI.
 
The products of SCIRE result from the combined efforts of expert scientists, clinicians, consumers and stakeholders to increase the accessibility of quality information in SCI rehabilitation.

The outcome measures section present common measures used in SCI clinical practice, provides information on the clinical utility and psychomeric properties of these measures, which helps clinicians select appropriate measures to help them accomplish a number of goals (i.e., monitor progress, evaluate programs, etc.).

The new features in the outcome measures section includes:

• How-to info that details everything needed for usage of each measure (selected videos, handy patient forms, measurement instructions and scoring).
• Summary pages detailing clinically relevant information for each measure.
• Data extraction documents with cited data for each measure.
• 13 new measures, bringing the total to 104 measures

To learn more about SCIRE, click here.

0 READER COMMENTS  [post comment]
Dec 02, 2013 at 1:32 PM

PAR-QoL Expert Spotlight - Answers On-Line
Dr. Brett Smith

The PAR-QoL team held an expert spotlight event with

Dr. Brett Smith from Loughborough University, UK. 


Between October 11 and November 11 (2013), visitors to the PAR-QoL website submitted a question to Dr. Smith to obtain his thoughts about spinal cord injury (SCI) and quality of life research (or other related research).

 Selected questons were forwarded to Dr. Smith for his response, and are now posted - which you can see here.

We are extremely grateful for Dr. Smith's participation in this event and thank him for his excellent answers!

 

As well, we want to thank everyone who submitted a question and please stay tuned to upcoming Expert Spotlight Events in 2014! 

Dr. Brett Smith

 

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Dec 12, 2013 at 11:06 AM

PAR-QoL - Year End Message and Request for Feedback
Usability

As 2013 comes to  close, the PAR-QoL team would like to thank all of our visitors for your interest in our site, and your continued support. Since starting in 2011, the number of visitors have grown from a few hundred to over 5,000 a month, and we are gaining traction at the international level. 

In addition to our continued efforts to bringing you relevant information happening in the field of spinal cord injury (SCI) via our blog and news and events features, we added in our quarterly newsletter feature to deliver this information conveniently to your email inboxes. 

We were also pleased to have Dr. Brett Smith participate in our 2013 expert spotlight event, which provided a unique opportunity for visitors to have their questions answered by a leading expert in the field.

To help ensure that we are continuing to meet your needs, we are requesting your feedback on key components of the website such as the ease of use and the usefulness of the site to ensure strong, continued use fo the site. We are seeking feedback from 100-200 clinicians and researchers working in the field of SCI who have used the PAR-QoL website to respond to a quick 5 minute survey and an optional telephone interview.  To learn more about this study, please click here or go to:

http://fluidsurveys.com/surveys/the-research-team/par-qol-usability-survey/ 

   

  We hope that 2014 brings you all the very best!  Happy holidays from the PAR-QoL Team!
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Feb 20, 2014 at 12:49 PM

Funding Opportunities and Meetings for 2014

We hope that 2014 has been off to a good start to all of you.  To start off our year here at PAR-QoL, we thought we would share some notices for funding and upcoming meetings.

FUNDING

The Rick Hansen Institute is launching two new funding opportunities: Emerging Interventions & Innovative Technologies and Preclinical SCI Research Towards Cures.

Learn more at: http://www.rickhanseninstitute.org/open-funding-rfa

As well, the Rick Hansen Institute and the University of Ottawa have put out a call for a post-doctoral fellowship.

Learn more at: http://onf.org/posts/49

The Craig Nielsen Foundation Psychosocial Research grants cycle is now open with their call for letters of intent due on March14, 2014.  As well, their SCI medicine fellowship is due late February. 

Learn more at: http://chnfoundation.org/

The Christopher and Dana Reeve Foundation's Quality of Life Grants cycle is now open - Learn more by clicking here

 

MEETINGS

The 2014 American Spinal Injury Association (ASIA) Annual Meeting: May 14-17, 2014 in San Antonio, Texas. 

Learn more by clicking here.

The Paralyzed Veterans of America (PVA) Summit 2014: August 26-28, 2014 in Las Vegas, Nevada. 

Learn more by clicking here.

The 53rd International Spinal Cord Society (ISCOS) Annual Scientific Meeting: September 2-4, 2014 in The Netherlands. 

Learn more by clicking here.

The 6th National Spinal Cord Injury Conference: October 2-4, 2014 in Toronto, Ontario. 

Learn more by clicking here.

The 91st Annual American Congress of Rehabilitation Medicine (ACRM) Conference: October 7-11, 2014 in Toronto, Ontario.

Learn more by clicking here.

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Mar 07, 2014 at 10:47 AM

2014 Paralympics

The Paralympics opening ceremony is today!

We salute the participating athletes and look forward to an exciting series of sporting events.

As a Canadian-based website, we like to highlight a few Canadians with spinal cord injury taking part of this historic event:

Two-time gold medallist Sonja Gaudet will be Canada's flag-bearer at the 2014 Paralympic Game. Learn more about Sonjet Gaudet here.

Kevin Rempel from Team Canada's sledge hockey team.  Learn about Kevin Rempel here.

Some other Canadians athletes being profiled include:

Colette Bourgonje - Para-Nordic skiing

Josh Dueck - Para-alpine skiing

Kimberly Joines - Para-alpine skiing

Read about them here

You can follow the achievements of Team Canada at: http://paralympique.ca/sochi-2014

And you can follow all the athletes at the official 2014 paralympics webpage at: http://www.sochi2014.com/en

    Sochi 2014 Paralympics            
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Jul 03, 2014 at 10:18 AM

SCI Research Studies and Other Events

Hello

We hope your summer has been going well.  Here are a few interesting activities currently on-going in the field of spinal cord injury (SCI):

The Rick Hansen Institute, along with several partners, is doing a study on barriers and faciliators on doing international research in the field of SCI.  To learn more, go to the study page at the RHI website by clicking here.

As you may have seen throughout the PAR-QoL website, we are still conducting a usability study on the website.  If interested in providing us with feedback on how we can improve the website to better meet your needs, please click here to learn more about the study.

The Ontario Neurotrauma Foundation's Spring Newsletter is now online and can be obtained by clicking here.  It highlights the new resource for physicians called 'Caring for Persons with Spinal Cord Injury: An eLearning Resource for Family Physicians'.  These guidelines, along with other important resources, can be accessed via our links page.

A number of exciting conferences are coming up this Fall.  Below is a list.

The Paralyzed Veterans of America (PVA) Summit 2014: August 26-28, 2014 in Las Vegas, Nevada. 

Learn more by clicking here.

The 53rd International Spinal Cord Society (ISCOS) Annual Scientific Meeting: September 2-4, 2014 in The Netherlands. 

Learn more by clicking here.

The 6th National Spinal Cord Injury Conference: October 2-4, 2014 in Toronto, Ontario. 

Learn more by clicking here.

The 91st Annual American Congress of Rehabilitation Medicine (ACRM) Conference: October 7-11, 2014 in Toronto, Ontario.

Learn more by clicking here.

 

 

 


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Sep 09, 2014 at 10:48 AM

SCIRE Version 5.0 Launches
SCIRE Logo  

The Spinal Cord Injury Rehabilitation Evidence (SCIRE) Project has just launched it's latest version on-line.

SCIRE Version 5.0 covers a comprehensive set of topics relevant to SCI rehabilitation and community reintegration. SCIRE reviews, evaluates, and translates existing research knowledge into a clear and concise format to inform health professionals and other stakeholders of best rehabilitation practices following SCI.

For the latest version, the SCIRE team has:

  • Reviewed 3,387 articles

  • Rated 1,361 articles

  • Written 27 chapters of rated evidence accessible on our Rehabilitation Evidence page, and 

  • Reviewed 107 outcome measures useful for SCI practice; many of which are available to download.

To learn more, visit the SCIRE Project at: www.scireproject.com

 

 

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Oct 21, 2014 at 3:55 PM

Spinal Cord Injury: A Manifesto for Change

The Ontario Neurotrauma Foundation has posted an interesting tidbit about efforts to improve the care of people with spinal cord injury (SCI)

Spinal Cord Injury: A Manifesto for Change is an unprecedented call to action and a plea for Canadian health-care providers and stakeholders to work in coordination to improve care and the health of people living with spinal cord injury (SCI) in Canada.

The Manifesto, based on the consensus of 23 experts, outlines the long-term issues for people living with SCI: secondary health concerns; increased need and utilization of health-care services; and disparate access to care, services and expertise.

You can learn more about this initiative by clicking here.

You can also download the manifesto as a PDF by clicking here:


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Nov 25, 2014 at 10:14 AM

November 2014

ABC of Autonomic Dysreflexia in spinal cord injury.

There is a new online course to help clinicians learn about managing Autonomic dysreflexia (AD) in people with spinal cord injury (SCI) called the 'ABC of Autonomic Dysreflexia'. AD, also called hyperreflexia, is a condition that results from overactivity of the autonomic nervous system in individuals with SCI. It is characterized by increased arterial blood pressure that is caused by a very simple stimuli, such as a tight seat beat, inappropriate wheelchair positioning, or a pinched catheter. Symptoms can range in severity from mildly unpleasant to debilitating for the individual.

Without timely recognition and management AD can complicate and lead to life-threatening situations.  

 

Dr. Andrei Krassioukov, SCI physician and Associate Director of Rehabilitation Research for the International Collaboration on Repair Discoveries (ICORD), is a national leader in AD research. His work has led to a better understanding of AD, including the underlying physiology and anatomy, symptom recognition, and treatment.

Based on his research findings, Dr. Krassioukov and colleagues have created the 'ABC of Autonomic Dysreflexia'  course. The course will teach you about the anatomical and physiological mechanisms behind AD, how to recognize AD symptoms, and how to manage and treat AD episodes. The course is free and there is no time limit for completion.

 

You can visit the website and take the course by clicking here.   

 

   

0 READER COMMENTS  [post comment]
Dec 11, 2014 at 12:32 PM

Get In Motion - A Free Physical Activity Counseling Service for SCI

0 READER COMMENTS  [post comment]
Feb 10, 2015 at 10:52 AM

ParQoL Feb Blog - Portraying the lives of Canadians with spinal cord injury.

Dr. Luc Noreau and colleagues have recently published findings from a national survey describing the lives of Canadians with spinal cord injury (Topics in Spinal Cord Injury Rehabilitation 2014) 

The aims of this study were to determine the extent of met and unmet needs of people living with SCI and to describe the quality of life and life satisfaction within specific domains. 

 

TOP 5 EXPRESSED NEEDS

1. Equipment and technical aids

2. General health care

3. Short-distance transportation

4. Accessible housing

5. SCI-specialized healthcare

*Approximately 75% of respondents report that their top 5 needs are being met.

 

Quality of Life and Life Satisfaction

  • Approximatley 60% (non-traumatic SCI) and 70% (traumatic SCI) of participants reported good or very good quality of life.
  • Respondents were most satisfied with family life, partner relationships, psychological health, and contacts with friends. 
  • Respondents were least satisfied with vocational and financial situation, recreation, and physical health (particularly with their sex life). 

 

This survey is the first in Canada to provide a comprehensive picture of community living for individuals with SCI. The results will help to determine the links between various aspects of community living and will help guide service providers to focus on major issues that may enhance quality of life after SCI.

0 READER COMMENTS  [post comment]
Apr 20, 2015 at 10:19 AM

Preventing and Treating Pressure Sores: A Guide for People with Spinal Cord Injuries

The Ontario Neurotrauma Foundation funded Spinal Cord Injury Ontario to develop and release a consumer guide for people with Spinal Cord Injury on preventing and treating pressure sores. This new guide is based on the 2013 Canadian Best Practice Guidelines for the Prevention and Management of Pressure Ulcers in People with Spinal Cord Injury.

 

The guide contains valuable and accesible information on:

- What pressure sores are;

- Preventing pressure sores;

- Treating pressure sores;

- Working with your healthcare team.

 

You can view or download the document by accessing their website here.

0 READER COMMENTS  [post comment]
Aug 05, 2015 at 12:06 PM

Pan-Am Games set to Launch!

The Parapan Am Games will launch on August 7th in Toronto. The Games will feature 1,608 athletes from 28 countries competing in 15 sports.

Dr. Gaétan Tardif , President, Canadian Paralympic Committee, and Program Medical Director, Toronto Rehab, talks about what it means for Canadian athletes to compete in Toronto. He encourages everyone to experience some Paralympic sports.

The PAR-QoL Team wishes all the athletes a good competition!

To learn more about the Parapan Am Games, click here

Interesting facts about the Parapan Am Games?

1. The word “Paralympic” derives from the Greek preposition “para” (meaning beside or alongside) and the word “Olympic,” illustrating how the two movements exist side by side.

2. Swimming is one of the longest-standing sports for athletes with a disability, and has been part of the Paralympic Games since their inception in 1960.

3. Wheelchair rugby is a Canadian invention started by a group of individuals with quadriplegia who were looking for a sport where athletes with reduced hand and arm function could excel.

4. These Games are the first time that the Canadian women's sitting volleyball team will be at the Parapan Am Games. The men's team won a medal in the 2011 games and will be looking to repeat their success.

5. Goalball is played exclusively by athletes with visual impairments, using a ball with bells inside. It was invented for soldiers who had lost their vision in World War II and has no Pan Am Game equivalent.

6. Boccia is a game of skill, accuracy and strategy originally designed for athletes with cerebral palsy but is now also open to athletes using assistive devices. It requires extreme concentration and muscle control.

7. In a blend of speed, skill and power, table tennis is open to athletes with physical impairments, competing in either standing or sitting classifications.

0 READER COMMENTS  [post comment]
Oct 09, 2015 at 3:19 PM

The Big Idea - Epidural Stimulation Research

At the Christopher and Dana Reeve Foundation website, there is some interesting research being highlighted on Epidural stimulation research for people with complete motor spinal cord injuries (SCI).  This work is being led by Drs. Susan J. Harkema and Claudia Angeli, and their subjects have made some incredible improvements.

 

See the video below:


 

 

To learn more, go to: http://www.reevebigidea.org/

0 READER COMMENTS  [post comment]
Feb 18, 2016 at 11:45 AM

2016 College Resources for Students with Disabilities

AccreditedOnlineColleges.org recently published the 2016 College Resources for Students with Disabilities.

Since the Americans with Disabilities Act enacted in the late 90's, many social barriers have been removed or reduced, yet there is still a ways to go. In the course of their research, it was found that most student with disabilities were not fully aware of educational rights, grants, and education resources that are available for them. So they decided to create a user-friendly guide that explores legal provisions as well as a comprehensive listing of scholarships and grants designed specifically to support their higher education pursuits. The hope is their guide will not only answer common questions, but allow those living with disabilities the opportunity to leverage educational benefits and feel empowered to continue to lead fulfilling lives.


To see the guide, visit their website here.

0 READER COMMENTS  [post comment]
Jan 03, 2017 at 12:59 PM

Yoga for Spinal Cord Injury

Yoga and SCI

The popularity of yoga for persons with disabilities and other chronic illnesses is growing. Researchers at the Toronto Rehabilitation Institute and York University (Toronto, Ontario) have done some preliminary work evaluating the feasiblity and efficacy of Yoga in persons with spinal cord injury (SCI) [study abstract], which has led to a recently completed clinical trial [trial description].

 

The Spinal Cord Injury Zone has compiled a list of videos on yoga for wheelchair users. The videos can be viewed here.

0 READER COMMENTS  [post comment]
Feb 09, 2017 at 11:46 AM

Canadian Access & Inclusion Project - Have your say!

The Canadian Access & Inclusion Project is interested in your opinions, comments and recommendations to make Canada a more accessible and inclusive country. The project is led by Spinal Cord Injury Canada and includes 28 different disability organizations including the Ontario Neurotrauma Foundation.

To participate in the online survey please click here - http://include-me.ca and look for a box named survey. By clicking the box you will have an opportunity of providing your input into this important process. We encourage you to participate.

As well you can check out the Rant, Rave & Recommend page: http://sci-can.ca/canadian-access-inclusion-project/rant-rave-recommend. Here, you can share your thoughts about an accessible and inclusive Canada. What needs to be fixed? What’s working? And what are your solutions?

The feedback you give will be anonymously shared with the project researchers and compared to what is heard in the focus groups and interviews held across the country by many of the participating organizations. The information received will be analyzed to see what themes occur. All this information will be provided to Minister Qualtrough, Minister of Sport and Persons with Disabilities who has been directed by Prime Minister Trudeau to recommend federal accessibility legislation. If you want to find out more about this process you can find it here; http://canada.ca/Accessible-Canada.

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Mar 20, 2017 at 2:36 PM

Upcoming Events in the SCI Field

Several conferences related to spinal cord injury (SCI) are coming up.  Here are a few key details about these exciting events:

The 56th Annual International Spinal Cord Society (ISCOS) Annual Scientific Meeting will be happening in Dublin, Ireland this year on October 24-26, 2017.  There are two weeks left to submit an abstract: http://www.iscos.org.uk/2017-annual-scientific-meeting

The 2017 Paralyzed Veterans of America (PVA) Annual Summit will occur on August 29-31, 2017at the Gaylord National Resort and Convention Center (Washington, D.C.).  Registration is now open and their are 500 Scholarship oportunities for qualifying clinicians to attend.  To learn more about this scholarship program, visit here: http://summitpva.org/scholarships 

The 2017 Scientific Meeting of the American Spinal Injury Association (ASIA) will occur on April 27-29 in Albuquerque, New Mexico.  Registration is now open: http://www2.asia-spinalinjury.org/meetings/2017/guide/reg/index.iphtml 

The National SCI Conference will happen in Niagara Falls, Canada on November 8-11.  Registration is now open: http://www.sci2017.com/venue/

Image result for conference

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