Gale Whiteneck

Mortality, morbidity, and psychosocial outcomes of persons spinal cord injured more than 20 years ago

Mortality, morbidity, health, functional, and psychosocial outcomes were examined in 834 individuals with long term spinal cord injuries. All were treated at one of two British spinal injury centres: the National Spinal Injuries Centre at Stoke Mandeville Hospital or the Regional Spinal Injuries Centre in Southport; all were 20 or more years post injury. Using life table techniques, median survival time was determined for the overall sample (32 years), and for various subgroups based on level and completeness of injury and age at injury. With the number of renal deaths decreasing over time, the cause of death patterns in the study group as it aged began to approximate those of the general population. Morbidity patterns were found to be associated with age, years post injury, or a combination of these factors, depending upon the particular medical complication examined. A current medical examination of 282 of the survivors revealed significant declines in functional abilities associated with the aging process. Declines with age also were found in measures of handicap and life satisfaction, but three quarters of those interviewed reported generally good health and rated their current quality of life as either good or excellent.

Long-term survival in spinal cord injury : a fifty year investigation

The aims of this study were to examine long-term survival in a population-based sample of spinal cord injury (SCI) survivors in Great Britain, identify risk factors contributing to deaths and explore trends in cause of death over the decades following SCI. Current survival status was successfully identified in 92.3% of the study sample. Standardised mortality ratios (SMRs) were calculated and compared with a similar USA study. Relative risk ratio analysis showed that higher mortality risk was associated with higher neurologic level and completeness of spinal cord injury, older age at injury and earlier year of injury. For the entire fifty year time period, the leading cause of death was related to the respiratory system; urinary deaths ranked second followed by heart disease related deaths, but patterns in causes of death changed over time. In the early decades of injury, urinary deaths ranked first, heart disease deaths second and respiratory deaths third. In the last two decades of injury, respiratory deaths ranked first, heart related deaths were second, injury related deaths ranked third and urinary deaths fourth. This study also raises the question of examining alternative neurological groupings for future mortality risk analysis.

What does participation mean? An insider perspective from people with disabilities

Purpose. Although participation is an important construct and valued goal, how it is conceptualized, defined and measured varies widely. This qualitative, multi-site study sought to gain an insider perspective from people with disabilities in grounding what participation means, how to characterize it, and the barriers and supports to participation. Method. Sixty-three people self-identifying with diverse disabilities participated in qualitative focus groups across sites. Results. Participants conceptualized participation as a cluster of values that included active and meaningful engagement/being a part of, choice and control, access and opportunity/enfranchisement, personal and societal responsibilities, having an impact and supporting others, and social connection, inclusion and membership. Conclusions. No gold standard for ideal or optimal participation emerged; no one defined set or frequency of activities accounted for ‘full’ participation. Participants described needing to be free to define and pursue participation on their own terms rather than meeting predetermined societal norms. Participation was viewed as both a right and a responsibility, influenced by and ascribed to the person and to the society. Participation does not occur in a vacuum; the environment dynamically influences participation. Implications of this conceptual framing for assessment, research and systems level change to support participation of people with disabilities are discussed.

Secondary conditions following spinal cord injury in a population-based sample.

This prospective study investigates the frequency of both medical and non-medical complications reported by the population based cohort of SCI survivors reported to the Colorado Spinal Cord Injury Early Notification System (ENS). Persons reported to the ENS between January 1 1986 and December 31 1993, representing the broad spectrum of all severities of spinal cord injury and potential complications, were solicited to participate in comprehensive follow-up interviews at their first, third and fifth year post injury. Hospitalizations of a week or longer were experienced by more than 10% of the participants at each of the three interview years. Similarly, the medical complications of spasticity or pain were reported by more than 25% of the participants, and pressure sores were reported by more than 10% at all three time periods. The chief non-medical complications (conditions) were financial concerns and transportation problems. Although these reported medical and non-medical complications present significant obstacles to be overcome, less than three percent of those surveyed at any of the time periods reported experiencing depression; and only 14% rated their quality of life as being poor.

Long-term spinal cord injury: Functional changes over time

Functional changes were assessed in a group of 279 individuals with long-term spinal cord injuries. All had sustained their initial injuries 20 to 47 years ago and all had received initial and postinjury follow-up care at one of two British spinal cord injury treatment centers. Twenty-two percent reported that the need for physical assistance from others had increased over the years. Most (45%) needed additional help with transfers; others needed more assistance with dressing, mobility, and toileting. When compared to those whose need for help had not increased, significant differences were found by age: as a group, and when separated by level and severity of injury, those needing more help were older, and those with cervical injuries needed help at younger ages than their counterparts with lower level injuries. Those needing more help also had significantly more reports of shoulder pain, fatigue and weakness, weight gain, and postural changes. They used more attendant care, and perceived their quality of life to be lower than those whose level of function had not changed over time.

Longitudinal outcomes in spinal cord injury: aging, secondary conditions, and well-being

OBJECTIVE To specify the degree to which current age, duration of injury, and neurologic status affect the frequency of secondary health and psychosocial conditions in persons with long-term spinal cord injury (SCI), using both longitudinal and cross-sectional analysis techniques. DESIGN Prospective longitudinal examination and data collection involving individuals with SCI studied initially at their 5th, 10th, and 15th anniversaries postinjury, and subsequently 5 years later at their 10th, 15th, and 20th anniversaries postinjury. SETTING Five Regional Model Spinal Cord Injury Systems. PARTICIPANTS The 439 individuals who meet the inclusion criteria for the National SCI Database and who are enrolled in a longitudinal study of secondary conditions and SCI. MAIN OUTCOME MEASURES Physical and psychosocial status at various times postinjury. RESULTS There are different reports of various conditions when analyzing by neurologic groups, duration of injury, and age. Cross-sectional and longitudinal analyses also demonstrate different patterns of complications. CONCLUSIONS The longitudinal method, like cross-sectional research, allows for identification of physical and psychosocial changes soon after they occur. Longitudinal research, however, also makes possible the development of predictive models for various long-term outcomes.

Measuring what matters: Key rehabilitation outcomes

If you ask rehabilitation professionals to tell you about one of their very successful clients, you will learn about an individual who, despite significant disability, is an active productive member of society, well integrated into the community, and satisfied with a high quality of life. But the field of rehabilitation does not typically measure successful outcomes in terms of clients’ active productive participation in their community or their quality of life. Instead, our very thick medical records document medical stabilization, the extent of residual impairment, and a fairly precise quantification of the assistance an individual requires to perform a myriad of activities of daily living (ADL) like eating, bathing, transferring, bladder control, memory, and mobility. Measures that quantify a client’s achievements in, work, school, home, and communitythe very factors that we intuitively identify in defining successful rehabilitation outcomes-are not routinely employed. Most rehabilitation professionals and their constituents would prefer to define success in more global terms, if only adequate measures of community integration and quality of life were available. It is the thesis of this lecture that more attention should be given to measuring what matters: the full breadth of rehabilitation outcomes, including successes achieved in the community as well as skills mastered in the rehabilitation hospital. To accomplish this, greater conceptual clarity is needed to articulate and differentiate the outcomes of rehabilitation, valid measures are needed to quantify these outcomes, and the practical commitment is needed to use and interpret them.

Outcome measures in spinal cord injury: Recent assessments and recommendations for future directions

Study design:Review by the spinal cord outcomes partnership endeavor (SCOPE), which is a broad-based international consortium of scientists and clinical researchers representing academic institutions, industry, government agencies, not-for-profit organizations and foundations.Objectives:Assessment of current and evolving tools for evaluating human spinal cord injury (SCI) outcomes for both clinical diagnosis and clinical research studies.Methods:a framework for the appraisal of evidence of metric properties was used to examine outcome tools or tests for accuracy, sensitivity, reliability and validity for human SCI.Results:Imaging, neurological, functional, autonomic, sexual health, bladder/bowel, pain and psychosocial tools were evaluated. Several specific tools for human SCI studies have or are being developed to allow the more accurate determination for a clinically meaningful benefit (improvement in functional outcome or quality of life) being achieved as a result of a therapeutic intervention.Conclusion:Significant progress has been made, but further validation studies are required to identify the most appropriate tools for specific targets in a human SCI study or clinical trial.

Perceived needs following traumatic brain injury.

Objectives:(1) Provide population-based estimates of perceived needs following traumatic brain injury (TBI) and the prevalence of unmet needs 1 year postinjury; (2) identify relations among needs that define unique clusters of individuals; and (3) identify risk factors for experiencing selected needs. Design:Telephone survey 1 year after injury of a prospective cohort of all people hospitalized with TBI in the state of Colorado during 2000. Measures:Self-reported need for assistance in 13 areas of functioning. Results:A total of 58.8% of persons hospitalized with TBI experienced at least 1 need during the year following injury; 40.2% will experience at least 1 unmet need 1 year after injury. Most frequently experienced needs were “improving your memory, solving problems better” (34.1%), “managing stress, emotional upsets” (27.9%), and “managing your money, paying bills” (23.3%). Cluster analysis revealed 8 distinctive groupings of subjects. If a need existed, those least likely to be met involved cognitive abilities, employment, and alcohol and/or drug use. Conclusions:Results were consistent with findings from previous assessments of need for services based on surveys of convenience samples; however, the prevalence of unmet needs 1 year after injury may be higher than previously suspected. More post-hospital services addressing cognitive and emotional problems appear needed. Risk factors for experiencing needs suggest potential avenues for clinical intervention.

Sexual issues of women with spinal cord injuries.

The need for research addressing problems unique to women with spinal cord injuries is well documented. Consequently, 231 such women, ages 18 to 45, were surveyed. Demographic characteristics and data relating to physician usage, female hygiene, pregnancy, contraception and sexuality were collected.Analysis revealed that 60% of the respondents had post injury amenorrhea; the average time until menses resumption was 5 months. The groups post injury pregnancy rate was one-third its pre injury rate, but women with incomplete paraplegia had significantly more pregnancies than those with complete quadriplegia.Of 47 women who did carry babies to delivery, one-half had vaginal deliveries; 49% used no anesthesia. Problems during pregnancy included autonomie hyperreflexia, decubitus ulcers, urinary tract infections, water retention, bladder and bowel problems, anemia, spotting, fatigue, cardiac irregularity and toxemia. Many of these problems plagued the women during labor and delivery and in the post partum period as well.Sixty-nine percent of the women were satisfied with their post injury sexual experiences, although self confidence, spasticity, and lack of spontaneity were issues. Although satisfied with care received from physicians, many women were not content with the information provided during rehabilitation, and felt a need for more literature, counselling, and peer support.