Kiley Pershouse

The relationship between quality of life and disability across the lifespan for people with spinal cord injury

Study design:Prospective cross-sectional survey.Objectives:To compare quality of life (QOL) for people with spinal cord injury (SCI) and their able-bodied peers and to investigate the relationship between QOL and disability (impairments, activity limitations and participation restrictions) across the lifespan, for people with SCI.Setting:A community outreach service for people with SCI in Queensland, Australia.Methods:A random sample of 270 individuals who sustained SCI during the past 60 years was surveyed using a guided telephone interview format. The sample was drawn from the archival records of a statewide rehabilitation service. QOL was measured using the World Health Organization Quality of Life Assessment Instrument-Bref, impairment was measured according to the American Spinal Injury Association classification and the Secondary Condition Surveillance Instrument, activity limitations using the motor subscale of the Functional Independence Measure and participation restrictions using the Community Integration Measure. Lifespan was considered in terms of age and time since injury. Correlation and regression analyses were employed to determine the relationship between QOL and components of disability across the lifespan.Results:QOL was significantly poorer for people with SCI compared to the Australian norm. It was found to be associated with secondary impairments, activity limitations and participation restrictions but not with neurological level, age or time since injury. The single most important predictor of QOL was secondary impairments whereas the second most important predictor was participation.Conclusion:To optimize QOL across the lifespan, rehabilitation services must maintain their focus on functional attainment and minimizing secondary conditions, although at the same time enabling participation.

The need for a multidisciplinary outreach service for people with spinal cord injury living in the community

Objective: To identify the nature and extent of perceived unmet needs of people with spinal cord injury (SCI) living in the community and to determine their preferences regarding multidisciplinary outreach service delivery. Design: Structured telephone interviews. Setting: Spinal Injuries Unit, Queensland, Australia. Subjects: Sixty people with SCI living in the community were approached for interview and 54 agreed to participate. Results: The results reflected a high need for a specialist, multidisciplinary SCI outreach service following primary rehabilitation. There were a diversity of issues faced by people with SCI. A high or very high need was reported by 31% of participants in relation to physical changes, by 24% regarding transport, by 22% for work issues and by 19% with respect to ongoing education needs. The greatest perceived barrier to needs being met was limited local specialist knowledge about SCI (81% of participants). A service model which includes access to telephone advice was endorsed by 79% of participants, and 43% supported home visiting that is available to rural and remote areas. Spinal Injuries Unit outpatient clinic appointments were also a preference for service delivery (40% of participants). Conclusions: Trial and evaluation of the telephone as a primary medium for service delivery, and education of local service providers is recommended.

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.

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.

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.

Community participation for individuals with spinal cord injury living in Queensland, Australia

Study design:Sequential mixed method design.Objectives:Determine factors associated with community participation for individuals with spinal cord injury (SCI).Setting:Queensland, Australia.Methods:Phase I consisted of a quantitative telephone survey of 270 people who had sustained a SCI within the past 50 years. To verify and interpret survey findings, Phase II involved a qualitative investigation. One focus group, one dyadic and one in-depth interview were conducted with a separate sample of eight people who had sustained a SCI within the past 50 years.Results:In Phase I, employment, paid or unpaid, was the strongest independent factor associated with community participation, whereas time since injury, completeness of injury, secondary conditions and functional independence were also independently associated. In Phase II, participants expressed that survey findings were consistent with their lived experiences. They explained that overall, they needed a strong reason to participate so that benefits outweigh the effort required to participate. Once out in the community, they recognised that other opportunities for participation arise.Conclusion:Rehabilitation services need to support individuals with SCI to find meaningful employment and to engage in activities that provide them with a strong reason to participate.

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.

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 individuals 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.

Responding to the health and disability service needs of people ageing with spinal cord injury: Implications for service providers

In the course of a large retrospective research study exploring implications of ageing with a spinal cord injury (SCI), 84 participants were asked to provide responses to a brief telephone questionnaire regarding the nature and quality of their utilisation of various health and disability services. The aim of this study was to explore service utilisation, level of satisfaction with the services utilised, and the nature of the support received from these services for a sample of people ageing with spinal cord injury (SCI). Findings highlighted that people ageing with SCI have need of a range of health and disability services predominantly focusing on achieving instrumental assistance. Satisfaction with service was generally high and demonstrated the importance of interpersonal communication skills, technical competence and responsiveness in the delivery of outcomes.