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.

The delivery of specialist spinal cord injury services in Queensland and the potential for telehealth.

BACKGROUND: The Queensland Spinal Cord Injuries Service (QSCIS) is a statewide service in Brisbane at the Princess Alexandra Hospital (PAH). The QSCIS assists individuals with a spinal cord injury (SCI) through three services: the Spinal Injuries Unit (SIU), Transitional Rehabilitation Program (TRP) and the Spinal Outreach Team (SPOT). The aim of this study was to undertake a review of ambulatory services provided by the QSCIS (SIU and SPOT) to help identify where telehealth may potentially be useful. METHODS: Profiling of patients with SCI in Queensland was achieved using database records containing referral data. Services provided by SIU Outpatient Clinics and the SPOT during a 6-year period (January 2008 - December 2013), were analysed. Using postcodes, we estimated distances between place of residence and Brisbane. We compared the general population of SCI patients with patients managed through SIU Outpatient Clinics and the SPOT. RESULTS: During the 6-year period, 2073 patients were referred to the QSCIS (and living) at the time of the analysis. 74% of all patients were male. The median age was 51y (IQR 39y-61y). About two-thirds of all patients lived within 200 km of Brisbane. 24% of all patients registered with the QSCIS lived further than 200 km away from Brisbane. 7513 appointments were provided in the SIU outpatient clinic. 43,827 occasions of service were reported by the SPOT, including telephone consultations (66%) and home visits (26%). 72 outreach clinics were held in selected regional sites for up to 100 patients per year. 13 videoconference appointments reported. 90% of all patients who attended the SIU outpatient clinic lived within 200 km of Brisbane. About two-thirds of patients who received a service from the SPOT lived within 200 km of Brisbane. CONCLUSION: Since one third of all patients registered with the QSCIS live at least 200 km away from Brisbane; it appears that these patients may not be accessing the same services as Brisbane based patients. Telehealth models of care, which promote better engagement with local health service providers (such as general practitioners, nurse practitioners and allied health professionals) could improve equity of access and reduce the need for extensive travel.

Factors Which Facilitate or Impede Interpersonal Interactions and Relationships after Spinal Cord Injury: A Scoping Review with Suggestions for Rehabilitation.

Interpersonal interactions and relationships can influence an individual's perceptions of health and quality of life in the presence of disability. In the case of people with spinal cord injury (SCI), positive interpersonal interactions and relationships have been shown to contribute to resilience and adaptability. Understanding factors which facilitate or impede the development and maintenance of relationships after SCI may form the basis for proactive relationship support for people with SCI. To gain a broad insight into these factors, a scoping review was undertaken. Databases were searched for English language studies published between 2000 and 2015 that informed the review question. Sixty-two (62) studies were identified. Thematic analysis was conducted on data extracted from the studies and 51 factors which may facilitate relationships and 38 factors which may impede relationships after SCI were noted. The majority of factors could be categorized as environmental or personal according to the domains of the International Classification of Functioning, Disability, and Health (ICF). The facilitating factors included partner and social support, reciprocity in relationships, and presenting oneself positively. Impeding factors included physical environmental barriers, real and perceived social biases, and poor self-image. Factors identified may inform the provision of supportive, holistic rehabilitation for people with SCI.

General practice visits by people with traumatic spinal cord injury: a Queensland longitudinal study.

People with traumatic spinal cord injury (SCI), although proportionally fewer in number, are known to be high users of primary health care services; however, details of their visits to GPs are unclear. This study presents information about GP utilisation patterns of 193 people with SCI over a 5-year period. Results demonstrate substantially greater GP service utilisation, particularly for young men with SCI, compared with their counterparts in the general population. Interestingly, people with paraplegia were proportionally higher users of GP services than those with tetraplegia. Results indicate the need for specialist support for GPs to meet the SCI-specific needs of this patient group. Specialist SCI outreach teams may be a useful resource to primary health care practitioners.

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.

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.

Reliability of the clinical outcome variables scale when administered via telephone to assess mobility in people with spinal cord injury.

OBJECTIVE: To examine the equivalence reliability and test-retest reliability of the Clinical Outcome Variables Scale (COVS) when administered via telephone (TCOVS) to people with spinal cord injury (SCI). DESIGN: Equivalence (telephone administration vs in-person) and test-retest reliability study. SETTING: Assessments conducted in participants' home environment. PARTICIPANTS: Equivalence reliability was examined in a convenience sample of 37 people with a diagnosis of traumatic SCI who had been discharged from the Queensland Spinal Injuries Unit to the community. In a separate group of participants, test-retest reliability of COVS when administered via telephone was examined in 43 people with SCI who were randomly selected from the Queensland Spinal Cord Injuries Service records. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Reliability was assessed at the subscale and composite score level using intraclass correlation coefficients (ICC(2,1)) and Bland-Altman limits of agreement. RESULTS: Reliability was good for TCOVS and COVS for the composite score (ICC=.98), mobility subscale (ICC=.97), and ambulation subscale (ICC=.99). Reliability was also good for TCOVS test and retest assessments for the composite score (ICC=1), mobility subscale (ICC=1), and ambulation subscale (ICC=1). For all comparisons, most data points were within the 95% limits of agreement and the width of limits of agreement were considered to be clinically acceptable. CONCLUSIONS: The study findings confirm the equivalence and test-retest reliability of the TCOVS in an SCI population when administered by trained raters.

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.

Perceived causes of change in function and quality of life for people with long duration spinal cord injury.

OBJECTIVE: To determine those factors perceived to change or threaten function and quality of life among individuals with long duration spinal cord injury. DESIGN: Retrospective self-report using telephone-administered questionnaire. SETTING: Queensland, Australia. SUBJECTS: Eighty-four community-resident persons with spinal cord injury. MAIN OUTCOME MEASURES: Functional Independence Measure, Delighted-Terrible Scale, Perceived Causes of Change Inventory. RESULTS: Pain and loss of strength were perceived to have caused change in function in 11.9% and 14.3% of participants respectively while these same factors were perceived to have caused change in quality of life in 19.0% and 17.9% of participants respectively. Even when measurable change had not occurred, pain and loss of strength were perceived threats to function in 45.2% and 44.0% of participants respectively, while these same factors were perceived threats to quality of life in 10.7% and 11.9% of individuals respectively. Emotional issues such as stress, depression, family functioning, financial status and employment were also perceived causes of change in quality of life. CONCLUSIONS: The ability of participants to identify the perceived causes of change in function and quality of life may have implications for preventative health care if these individuals are encouraged to seek assistance when these factors first become apparent.