Access to health and support services: perspectives of people living with a long-term traumatic spinal cord injury in rural and urban areas.

PURPOSE: To examine the perspectives of persons living with traumatic spinal cord injuries (tSCI) on their access to health and support services. The specific aims were to identify the perceived gaps in access, classify the nature of the perceived gaps and compare differences in perceptions of access between urban and rural participants. METHOD: Using a descriptive, qualitative approach, semi-structured interviews were conducted with 23 adults living with tSCI, 13 of whom had paraplegia. Ten participants resided in rural areas and 16 were male. Thematic analysis allowed for the identification of patterns, which were then categorized according to the dimensions of access. RESULTS: Opportunities to engage in health-promoting activities through a broad range of health and support services were at times limited, particularly by issues of affordability. In addition to core healthcare services, participants reported the need for complementary therapies, sports and leisure, peer support, equipment and mobility related services. Availability and accessibility of services was limited in some cases for rural participants, although rural residence conferred other valued benefits. Narratives of "not being heard" by providers were common. CONCLUSIONS: Maintaining health and well-being in people with tSCI demands access to both conventional health care and support services. Implications for Rehabilitation Access to both health and support services are important to maintaining the health and wellness of people with spinal cord injury. People with spinal cord injuries take an active role in coordinating their health, at times assuming various roles to compensate for perceived shortcomings of health care providers. Negotiating balances of power with gatekeepers in the health and insurance sectors was a key function of the coordinating role assumed by people with spinal cord injury. In order to effectively address the needs of this population, a coordinated interdisciplinary out-reach service, which includes peer support, must cross boundaries to engage sectors beyond traditional health care services, such as insurers and wellness providers.

Psychometric Properties of Activity, Self-Efficacy, and Quality-of-Life Measures in Individuals with Parkinson Disease.

PURPOSE: To examine the psychometric properties of six outcome measures in people with Parkinson disease (PD). METHOD: Twenty-four participants completed the following twice within 2 weeks: the timed up-and-go test (TUG), Northwestern University Disability Scale (NUDS), Schwab & England ADL Scale (S&E), Activities-specific Balance Confidence (ABC) Scale, PD Questionnaire-Short Form (PDQ 8), and Stanford Self-Efficacy for Managing Chronic Disease 6-Item Scale (SSE). Internal consistency, test-retest reliability (ICC[3,1]), and minimal detectable change (MDC) scores were calculated. Convergent and discriminant validity of the ABC were examined. RESULTS: Cronbach's alpha scores for the NUDS, ABC, PDQ-8, and SSE were 0.47, 0.92, 0.72, and 0.91 respectively. The intra-class correlation coefficient (ICC[3,1]) for the TUG was 0.69 and could be improved by averaging two trials. ICCs for the NUDS, S&E, ABC, PDQ-8, and SSE were 0.56, 0.70, 0.79, 0.82, and 0.72 respectively. The ABC correlated with the TUG (r=-0.44, p=0.03) and with PDQ-8 (r(s)=0.51, p=0.01) and NUDS (r(s)=0.48, p=0.02) walking items. The ABC was able to discriminate between stages 1 and 3 of disease progression but not between stages 1 and 2, which suggests that the ABC can distinguish large differences in disease progression but cannot detect more subtle differences. CONCLUSIONS: Homogeneity of the ABC, PDQ-8, and SSE is good to excellent. Test-retest reliability scores of all measures except the NUDS are moderate to good. The ABC is a valid measure for use in PD. The MDC statistic may be useful for interpreting group score changes.

An exploratory study of two measures of free-living physical activity for people with multiple sclerosis.

OBJECTIVE: To examine the ability of two measures of physical activity (tri-axial accelerometer and activity diary) to discriminate among groups of inactive, moderately active and active individuals with multiple sclerosis and to explore the relationship between these two measures. DESIGN: Exploratory, descriptive study. SUBJECTS: Thirty individuals with multiple sclerosis and nine controls. PROTOCOL: Individuals with multiple sclerosis were recruited to inactive, moderately active and active groups as defined by Adjusted Activity Scores from the Human Activity Profile. Control participants were recruited to an active group. Free-living physical activity was recorded over four consecutive days. MAIN MEASURES: A TriTrac RT3 accelerometer and a self-report physical activity diary were used to measure activity. RESULTS: Thirty-six participants completed data collection. For the participants with multiple sclerosis, both the accelerometer (P = 0.004) and the diary (P = 0.006) detected significant differences between inactive and active groups. The accelerometer also detected a significant difference between moderately active and active groups (P = 0.04). In contrast, the diary detected a significant difference between inactive and moderately active groups (P = 0.05). Accelerometer and diary scores were significantly correlated (r = 0.59). Accelerometer scores were significantly correlated with neurological status (r(s) = -0.64). CONCLUSIONS: Both measures readily differentiated least active from most active groups. The accelerometer also differentiated moderately active from active groups, suggesting suitability for use in detecting change in more active client groups, while the diary differentiated inactive from moderately active groups, suggesting suitability for use in detecting change in less active groups.