Longitudinal effects of time since injury and age at injury on outcomes of people with spinal cord injury in Queensland, Australia.

STUDY DESIGN: Longitudinal cohort study. OBJECTIVES: To investigate the longitudinal effects of time since injury and age at injury on outcomes of quality of life, physical function, secondary conditions and participation, in people with traumatic spinal cord injury (SCI). SETTING: Community resident people with spinal cord injury in Queensland, Australia. METHODS: A baseline sample of 270 people with SCI was recruited. Telephone surveys on measures of quality of life (WHOQOL-Bref), secondary conditions (Secondary Conditions Surveillance Instrument, subset), physical functioning (Functional Independence Measure motor subscale) and participation (Community Integration Measure) were conducted each year between 2004 and 2008, and again in 2018. Random-effect within-between models were used to determine the effect of time since injury and age at injury on each outcome variable. Inverse probability-of-censoring weights were used to correct for selection bias. RESULTS: There was an effect of time since injury on secondary conditions, with a one-year change associated with 9% higher odds of having worse Secondary Conditions Surveillance Instrument scores (odds ratio = 1.09, 95% confidence interval = 1.02, 1.17; p = 0.006). We did not find any evidence of a time since injury effect on quality of life, physical function, or participation. Similarly, we did not find any evidence of an age at injury effect on any outcome variable. CONCLUSIONS: Secondary conditions may increase with longer time since injury among people with SCI, suggesting appropriate formal and informal supports are required to minimise the impact of these emerging health problems as individuals age.

Investigating changes in quality of life and function along the lifespan for people with spinal cord injury.

OBJECTIVE: To track changes in quality of life and function for people with spinal cord injury (SCI) along the lifespan. DESIGN: A wave panel design in which data were collected annually over 5 years across 6 strata that represented different periods since injury. SETTING: Telephone interviews with participants in their home environment. PARTICIPANTS: People (n=270) who had sustained a traumatic SCI in Queensland, Australia, over the previous 60 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Quality of life was measured using the World Health Organization Quality of Life-8. Human functioning was measured in 3 components. Body structure/function was measured using the Secondary Conditions Surveillance Instrument. Activity was measured using the motor subscale of the FIM (mFIM) and the Clinical Outcomes Variables Scale. Participation was measured using the Community Integration Measure (CIM) and the Impact on Participation and Autonomy questionnaire. RESULTS: Quality of life remained relatively constant across the lifespan. For body structure/function, there was a significant increase in secondary conditions with time since injury. There was a significant decrease in activity as measured by the mFIM for higher functioning individuals. Participation, as measured by the CIM, showed a significant increase with time since injury, but not when adjusted for the American Spinal Injury Association Impairment Scale, income level, and living situation. CONCLUSIONS: The findings of this study highlight that people with SCI are able to maintain quality of life and participation along the lifespan; however, increases in secondary conditions and a decline in function over time are likely. Rehabilitation services could work more effectively at addressing secondary prevention through enhanced monitoring over time, while broader societal responses are likely to hold the key to optimizing human functioning.

The impact of Professional Boundaries for Health Professionals (PBHP) training on knowledge, comfort, experience, and ethical decision-making: a longitudinal randomized controlled trial.

PURPOSE: A randomized controlled trial was conducted to evaluate the impact of Professional Boundaries for Health Professionals (PBHP) training program on the knowledge, comfort, experience, and ethical decision-making of multidisciplinary practitioners facing client-practitioner boundary dilemmas. METHODS: In all, 36 rehabilitation practitioners from an Australian state-wide spinal cord injuries service were assigned to experimental and control groups. The Boundaries in Practice (BIP) Scale measured outcomes at four points: pre, post, 3 months, and 1 year. The control group received the training after 3 months. Nonparametric Friedman's two-way analysis of variance was used to examine the trajectories over time. RESULTS: Analysis was conducted using the data of 10 experimental and 13 control group participants who responded at four data collection points. The experimental group showed significant improvement in knowledge (χ2 = 10.673, p = 0.014) and comfort (χ2 = 9.727, p = 0.021) managing professional boundaries post-training. The control group showed no significant change in knowledge or comfort. No significant change was seen in experience across either experimental (χ2 = 3.609, p = 0.307) or control group (χ2 = 7.800, p = 0.050). Ethical decision-making improved in the control group (χ2 = 13.188, p = 0.004) following training, however remained unchanged in the experimental group. CONCLUSIONS: The findings do not definitively support this training approach. Ethical decision-making may improve more substantially within the practice context and organizational culture change. Multifaceted approaches are indicated. Implications for Rehabilitation Ethical dilemmas related to boundaries between clients and practitioners are a frequent occurrence in the rehabilitation setting. In a relatively small sample, the current randomized trial provided inconclusive evidence on the benefit of a 1-day needs-oriented training program to improve knowledge, comfort, and ethical decision-making. Randomized trials of education and training for rehabilitation practitioners are fraught with challenges in the clinical environment of the rehabilitation setting. Multifaceted training approaches, management support and training as well as changes to policy and organizational context in the rehabilitation setting may be needed to more holistically address the issues surrounding professional boundaries in the rehabilitation setting.

Long duration spinal cord injury: perceptions of functional change over time.

PURPOSE: To investigate perceptions of functional change over time held by individuals with long duration spinal cord injury (SCI) living in Queensland, Australia. METHOD: A retrospective telephone questionnaire was administered to 84 individuals who had sustained a SCI more than 20 years previously and were older than 15 at the time of injury. Motor subset scores of the Functional Independence Measure (FIM) and a single scale measuring mobility aids status (MAIDS), were collected for three points in time--post discharge from initial rehabilitation (D/C point); approximately 10 years post injury (Mid point) and currently (Current point). RESULTS: A significant number of participants perceived that their function had increased between the D/C and Mid points and had subsequently decreased between the Mid and Current points. Participants also reported an increasing dependence on mobility aids between the Mid point and the Current point. Those who reported functional decline between the Mid and Current points were significantly older than those who did not report functional decline but did not differ in duration of injury or age at onset. CONCLUSIONS: The results support the need for services that provide assessment and intervention for functional changes throughout the life span of people with SCI.

Descriptions of community by people with spinal cord injuries: concepts to inform community integration and community rehabilitation.

Effective measurement and optimization of re-entry into the community after injury depends on a degree of understanding of how those injured persons actually perceive their community. In light of the limited research about foundational concepts regarding community integration after spinal cord injury, this study investigated how a large number of adults with spinal cord injury described their local communities. In the course of telephonic interviews, qualitative descriptions of community were obtained from 269 participants (1-56 years postinjury). These were thematically analysed for content and valence by three researchers. In addition to descriptions of community as 'place', findings echoed the three dimensions commonly included in measures of community integration, namely social integration, occupation and independent living. Participants who described their community in social and relationship terms reflected generally positive views about that community, whereas those who described their community in terms of physical space and access expressed a relatively greater proportion of negative views when describing their community. In general, substantial diversity of responses across participants suggested a need for greater complexity in understanding, measurement and clinical application of the notion of community within the area of community integration and participation. Specifically, the importance of focusing on social and relationship dimensions of community integration is emphasized for rehabilitation practice.