The health and life priorities of individuals with spinal cord injury: a systematic review.

Determining the priorities of individuals with spinal cord injury (SCI) can assist in choosing research priorities that will ultimately improve their quality of life. This systematic review examined studies that directly surveyed people with SCI to ascertain their health priorities and life domains of importance. Twenty-four studies (a combined sample of 5262 subjects) that met the inclusion criteria were identified using electronic databases (Medline, EMBASE, CINAHL, and PsycINFO). The questionnaire methods and domains of importance were reviewed and described. While the questionnaires varied across studies, a consistent set of priorities emerged. Functional recovery priorities were identified for the following areas: motor function (including arm/hand function for individuals with tetraplegia, and mobility for individuals with paraplegia), bowel, bladder, and sexual function. In addition, health, as well as relationships, emerged as important life domains. The information from this study, which identified the priorities and domains of importance for individuals with SCI, may be useful for informing health care and research agenda-setting activities.

[1]  J. Ditunno,et al.  Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study , 2008, Spinal Cord.

[2]  E. Lindeman,et al.  Life satisfaction in people with spinal cord injury during the first five years after discharge from inpatient rehabilitation , 2012, Disability and rehabilitation.

[3]  M. Dijkers,et al.  Quality of life after spinal cord injury: A qualitative study , 2001 .

[4]  I. Estores,et al.  The consumer's perspective and the professional literature: what do persons with spinal cord injury want? , 2003, Journal of rehabilitation research and development.

[5]  S. Dumont,et al.  Determinants of return to work among spinal cord injury patients: A literature review , 2007 .

[6]  D. Amsters,et al.  The need for a multidisciplinary outreach service for people with spinal cord injury living in the community , 2001, Clinical rehabilitation.

[7]  D. Gater,et al.  Perceptions of people with tetraplegia regarding surgery to improve upper-extremity function. , 2007, The Journal of hand surgery.

[8]  A. Jackson,et al.  Long-term medical complications after traumatic spinal cord injury: a regional model systems analysis. , 1999, Archives of physical medicine and rehabilitation.

[9]  L. D. de Witte,et al.  Health problems of persons with spinal cord injury living in the Netherlands , 2005, Disability and rehabilitation.

[10]  M. Fuhrer,et al.  SEXUAL ACTIVITIES, CONCERNS AND INTERESTS OF MEN WITH SPINAL CORD INJURY , 1992, American journal of physical medicine & rehabilitation.

[11]  R. Kane,et al.  Methodology for measuring health-state preferences--II: Scaling methods. , 1989, Journal of clinical epidemiology.

[12]  M. Clarke,et al.  Handsearching versus electronic searching to identify reports of randomized trials. , 2002, The Cochrane database of systematic reviews.

[13]  W. Miller,et al.  Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review , 2010, Spinal Cord.

[14]  F. Biering-Sørensen,et al.  Employment of persons with spinal cord lesions injured more than 20 years ago , 2009, Disability and rehabilitation.

[15]  M. Fuhrer,et al.  SEXUAL ACTIVITIES, CONCERNS AND INTERESTS OF WOMEN WITH SPINAL CORD INJURY LIVING IN THE COMMUNITY , 1993, American journal of physical medicine & rehabilitation.

[16]  R. Triolo,et al.  Consumer perspectives on mobility: implications for neuroprosthesis design. , 2002, Journal of rehabilitation research and development.

[17]  Michael G Fehlings,et al.  A Web-based systematic review on traumatic spinal cord injury comparing the "citation classics" with the consumers' perspectives. , 2006, Journal of neurotrauma.

[18]  Luc Noreau,et al.  Long-term consequences of spinal cord injury on social participation: the occurrence of handicap situations , 2000, Disability and rehabilitation.

[19]  P. Kennedy,et al.  Reported quality of life of people with spinal cord injuries: a longitudinal analysis of the first 6 months post-discharge , 2000, Spinal Cord.

[20]  A. Hosman,et al.  Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study. , 2008 .

[21]  Luc Noreau,et al.  Quality of Life After Spinal Cord Injury , 2005, Journal of neurologic physical therapy : JNPT.

[22]  P. Kennedy,et al.  Ranking the criteria for assessing quality of life after disability: Evidence for priority shifting among long-term spinal cord injury survivors. , 2000 .

[23]  K. Anderson.  Targeting recovery: priorities of the spinal cord-injured population. , 2004, Journal of neurotrauma.

[24]  P. Kennedy,et al.  Quality of life, social participation, appraisals and coping post spinal cord injury: a review of four community samples , 2006, Spinal Cord.

[25]  M. Scherer,et al.  A Pilot Study of Perceived Needs of Persons with New Spinal Cord Injury , 2002, Psychological reports.

[26]  K. Hammell,et al.  Spinal cord injury rehabilitation research: patient priorities, current deficiencies and potential directions , 2010, Disability and rehabilitation.

[27]  Hanson Rw,et al.  Sexual loss in relation to other functional losses for spinal cord injured males. , 1976 .

[28]  Maarten J. IJzerman,et al.  Survey of the needs of patients with spinal cord injury: impact and priority for improvement in hand function in tetraplegics , 2004, Spinal Cord.

[29]  B. Boswell.  Exploring Quality of Life of Adults with Spinal Cord Injuries , 1997, Perceptual and motor skills.

[30]  G. Krahn,et al.  Understanding Health Outcomes: Physical Secondary Conditions in People With Spinal Cord Injury , 2007 .

[31]  M. Dijkers.  Individualization in quality of life measurement: instruments and approaches. , 2003, Archives of physical medicine and rehabilitation.

[32]  M. Boninger,et al.  Future directions for spinal cord injury research: recent developments and model systems contributions. , 2011, Archives of physical medicine and rehabilitation.

[33]  K. Whalley Hammell.  Quality of life after spinal cord injury: a meta-synthesis of qualitative findings. , 2007, Spinal Cord.

[34]  R L Lieber,et al.  Acceptable benefits and risks associated with surgically improving arm function in individuals living with cervical spinal cord injury , 2009, Spinal Cord.

[35]  Kwan-Hwa Lin,et al.  Quality of life of spinal cord injured patients in Taiwan: a subgroup study , 1997, Spinal Cord.

[36]  C. Bungener,et al.  Emotional Factors and Subjective Quality of Life in Subjects with Spinal Cord Injuries , 2002, American journal of physical medicine & rehabilitation.

[37]  E. Yerxa,et al.  Quality of time use by adults with spinal cord injuries. , 1990, The American journal of occupational therapy : official publication of the American Occupational Therapy Association.

[38]  H. Sintonen,et al.  Comparison of health-related quality of life in three subgroups of spinal cord injury patients , 1998, Spinal Cord.

[39]  K. Hammell,et al.  Quality of life after spinal cord injury: a meta-synthesis of qualitative findings , 2007, Spinal Cord.

[40]  G. Lankhorst,et al.  Subjective weighting of disability: an approach to quality of life assessment in rehabilitation. , 1994, Disability and rehabilitation.

[41]  M. Dijkers.  Quality of life of individuals with spinal cord injury: a review of conceptualization, measurement, and research findings. , 2005, Journal of rehabilitation research and development.

[42]  P. London.  Injury , 1969, Definitions.

[43]  Maarten J. IJzerman,et al.  Choice-based evaluation for the improvement of upper-extremity function compared with other impairments in tetraplegia. , 2005, Archives of physical medicine and rehabilitation.