Evaluating knowledge of autonomic dysreflexia among individuals with spinal cord injury and their families.

BACKGROUND/OBJECTIVE: Autonomic dysreflexia (AD) is a potentially life-threatening complication of spinal cord injury (SCI) characterized by episodic paroxysmal hypertension and bradycardia in response to a noxious stimulus below the level of injury. Recognition of AD is crucial for individuals with SCI and their family members to facilitate timely and appropriate management. The objectives of this study were to (a) evaluate knowledge of AD among SCI consumers and their family members and (b) identify the preferred format and timing of education regarding AD recognition and management for these stakeholders. METHODS: Cross-sectional descriptive study on a cohort of community-dwelling individuals with chronic SCI (N = 100) and their family members (N = 16) by self-report mail survey. Frequency distributions were used to tabulate survey responses on AD knowledge level and to characterize learning preferences and 2 x 2 chi2 analyses were conducted to determine whether there were factors (ie, impairment) associated with AD knowledge (ie, how to treat AD). RESULTS: Individuals with SCI and their family members have gaps in their knowledge of AD. Traumatic SCI etiology (vs nontrauma) was associated with greater knowledge about treating AD. Although the SCI sample was a high-risk group, 41% had not heard of AD. More concerning was that 22% of individuals with SCI reported symptoms consistent with unrecognized AD. Respondents indicated that AD education would be best delivered during rehabilitation by a healthcare professional. CONCLUSIONS: Further work is needed to promote knowledge about recognizing and managing AD. This may help reduce risk of cardiac and cerebrovascular disease in the SCI population.

Secondary health complications in an aging Canadian spinal cord injury sample.

OBJECTIVES: This study describes self-reported incidence of secondary health complications (SHCs) and their associations with age, years postinjury (YPI), and impairment among a Canadian spinal cord-injured (SCI) cohort. DESIGN: Cross-sectional telephone survey methods were used to collect data on (1) sociodemographics, (2) impairment, (3) health status, and (4) self-reported SHCs on 781 adults >or=1 yr post-SCI living in Ontario, Canada. RESULTS: Logistic regression analyses were used to determine associations between self-reported incidences of SHCs with the following covariates: (1) age, (2) YPI, and (3) impairment. The odds ratios for cardiac complications, high blood pressure (HBP), and respiratory complications increased per year with age, whereas autonomic dysreflexia (AD), bladder infections, heterotopic ossification, psychological distress, and drug addiction decreased. The odds ratios for pressure ulcers, AD, and heterotopic ossification increased per YPI, whereas HBP, bowel problems, psychological distress, and depression decreased. Complete injuries were associated with bladder infections, pressure ulcers, and AD. Paraplegia was associated with HBP and bowel problems, and tetraplegia was associated with AD. CONCLUSIONS: The findings provide some clarification on factors associated with the occurrence of SHCs after SCI and are useful for informing health-promotion planners, clinicians, and stakeholders regarding the odds of SHCs with aging or among specific impairment groups.

User perspectives on issues that influence the quality of daily life of ventilator-assisted individuals with neuromuscular disorders.

OBJECTIVES: To identify user perspectives on the issues that impact the quality of the daily lives of ventilator-assisted individuals living in the community. METHODS: Semistructured interviews were held with 26 Canadian ventilator-assisted individuals (mean age 44+/-14 [SD] years, range 23 to 60 years; mean ventilator experience 18+/-13 years, range three to 53 years) whose disability from neuromuscular conditions necessitated assistance with activities of daily living. Participants described their daily life experiences and perceptions of the factors that limited or enhanced their quality. Interviews were tape-recorded, transcribed and analyzed for emergent codes and themes. RESULTS: Ventilator users characterized important issues in terms of personal successes and limitations, as well as dependencies on others for daily living. Personal support services, income security, health care and transportation were important positive contributors to their quality of life. Dependency on others was clearly a negative contributor. The ventilator was regarded as a form of assistive technology, similar to a wheelchair. Ventilator users perceived that ventilation was associated with a stigma and negative assumptions about disability, particularly if suctioning was required. CONCLUSIONS: The majority of participants considered home mechanical ventilation to be a positive benefit for independent living, enhancing their overall health. They were clear as to the issues of importance to them, and formulated recommendations for health care providers and policy makers that could improve the quality of their daily lives. Many of the issues identified in the present report are faced by the growing community of ventilator users.

Long-term adjustment and community reintegration following spinal cord injury.

This paper presents the results of a 2-year mixed methodology (quantitative and qualitative) study examining the reintegration and quality of life of community-residing adults with spinal cord injury (SCI). A convenience sample of 100 individuals with SCI completed three questionnaires for the quantitative study phase. A self-selected subsample of 34 of the participants then attended qualitative focus groups to further explore adjustment to living in the community after SCI. The results revealed that locus of control is crucial to subjective quality of life, productivity status, satisfaction with performance of daily activities and satisfaction with community integration. Respondents confirmed that substantial adjustments are required after SCI, and that these can be aided through education, involvement in productive activity and participation in social and leisure activities. A dominant finding was that social support and peer mentoring were invaluable. Stable health and appropriate pain management were crucial to subjective satisfaction with community integration, yet for many of the respondents these were elusive. Although the participants valued the rehabilitation process, they felt that "the system" was not client-centred and that the timing of services and information was not always relevant to individual needs. The clinical and practical implications of these results are discussed.