Martin Forchheimer

Quality of life, life satisfaction, and spirituality: comparing outcomes between rehabilitation and cancer patients.

Tate DG, Forchheimer M: Quality of life, life satisfaction, and spirituality: Comparing outcomes between rehabilitation and cancer patients. Am J Phys Med Rehabil 2002;81:400–410. Objective To determine differences in quality of life, life satisfaction, and spirituality across different patient groups and to determine what factors may relate to these three outcomes across rehabilitation and cancer patients. Design Subjects were first stratified by five diagnostic groupings. Patient data were then regrouped for additional analytic purposes into two large cohorts. All subjects completed questionnaires once. Differences in scores and correlations were computed, and regression models were specified. Results Group differences were found across the quality of life measures used in the study. There were also differences in life satisfaction and spiritual well-being. Spirituality was found to be associated with both quality of life and life satisfaction, although it was not a significant predictor in a multivariate context. Conclusions In general, subjects with prostate cancer reported higher scores across all measures. Spirituality showed a strong association with both life satisfaction and quality of life, and it was a significant predictor of life satisfaction among rehabilitation subjects. Factors such as age, marital status, and work status, in addition to specific dimensions of quality of life, such as social functioning and functional well-being, were found to be associated with total quality of life.

Use of the SF-36 among persons with spinal cord injury.

Forchheimer M, McAweeney M, Tate DG: Use of the SF-36 among persons with spinal cord injury. Am J Phys Med Rehabil 2004;83:390–395. The purpose of this study was to explore the applicability of the SF-36 for assessing health-related quality of life among persons with spinal cord injuries. A sample of 215 persons who had experienced new, traumatic spinal cord injury and who had been discharged from their initial hospitalizations for at least 1 yr were included in the study. Correlations between the SF-36s physical and mental component scores appraised and the relationship of each component to level of neurologic impairment was assessed. As expected, the two components measured separate and distinct constructs; only physical component scores were associated with impairment severity.

Assessment of a holistic wellness program for persons with spinal cord injury

Zemper ED, Tate DG, Roller S, Forchheimer M, Chiodo A, Nelson VS, Scelza W: Assessment of a holistic wellness program for persons with spinal cord injury. Am J Phys Med Rehabil 2003;82:957–968. ObjectiveTo test the effectiveness of a holistic (comprehensive and integrated) wellness program for adults with spinal cord injury. DesignA total of 43 adults with spinal cord injury were randomly assigned to intervention or control groups. The intervention group attended six half-day wellness workshops during 3 mos, covering physical activity, nutrition, lifestyle management, and prevention of secondary conditions. Outcome measures included several physical measures and standard psychosocial measures. Statistical analyses included paired t tests, used to determine within-group differences, and multiple regression conducted to assess between-group differences. ResultsWhen comparing within-group baseline and final results, the intervention group reported fewer and less severe secondary conditions by the end of the study. Similarly, significant improvements were found in health-related self-efficacy and health behaviors. No significant changes in physiologic variables were observed. Although no significant between-group differences were observed, regression analyses suggested participation in the wellness program may be associated with improved health behaviors. ConclusionWithin-group comparisons suggest improvements in several areas of the participants’ overall health behaviors. These findings, although preliminary, emphasize the potential role of health behaviors in positively influencing long-term health outcomes and quality of life.

Preliminary reliability and validity of a spinal cord injury secondary conditions scale

Abstract Background/Objective: Although the impact of secondary conditions after spinal cord injury (SCI) on health, well being, and financial burden have been studied, there are psychometrically sound scales of secondary conditions in the extant literature. The use of such scales allows for cross-sample comparison of secondary condition prevalence rates and associations with functional, medical, and psychosocial factors. Thus, the purpose of this study was to evaluate the preliminary reliability of a SCI secondary conditions scale. Methods: The Spinal Cord Injury Secondary Conditions Scale (SCI-SCS) is a 16-item scale based on the Seekins Secondary Conditions Scale. Sixty-five individuals with SCI completed written surveys at 5 time-points over 2 years. Results: Internal consistency across each of the time-points exceeded 0.76; test-retest reliability ranged from 0.569 to 0.805. Convergent validity was assessed with 6 physical functioning items from the SF-12. Spearman (coefficients were all statistically significant and ranged from 0.317 (accomplished less because of health problems) to 0.644 (pain). The most prevalent secondary conditions were chronic pain, joint and muscle pain, and sexual dysfunction. Conclusions: Preliminary testing of the SCI-SCS suggests that it is a reliable and valid scale, and further development (ie, factor analysis, item revision) and examination of validity are recommended with larger and more diverse SCI samples.

Spinal cord injury and aging challenges and recommendations for future research

ABSTRACTPopulation aging, caused by reductions in fertility and increasing longevity, varies by country and is anticipated to continue and to reach global proportions during the 21st century. Although the effects of population aging have been well documented for decades, the impact of aging on people with spinal cord injury (SCI) has not received similar attention. It is reasonable to expect that population aging features such as the increasing mean age of the population, share of the population in the oldest age groups, and life expectancy would be reflected in SCI population demographics. Although the mean age and share of the SCI population older than 65 yrs are increasing, data from the National Spinal Cord Injury Statistical Center suggest that life expectancy increases in the SCI population have not kept the same pace as those without SCI in the last 15 yrs. The reasons for this disparity are likely multifactorial and include the changing demographics of the SCI population with more older people being injured; susceptibility of people with SCI to numerous medical conditions that impart a health hazard; risky behaviors leading to a disproportionate percentage of deaths as a result of preventable causes, including septicemia; changes in the delivery of health services during the first year after injury when the greatest resources are available; and other unknown factors. The purposes of this paper are (1) to define and differentiate general population aging and aging in people with SCI, (2) to briefly present the state of the science on health conditions in those aging with SCI, and finally, (3) to present recommendations for future research in the area of aging with SCI.

Secondary health conditions in individuals aging with SCI: Terminology, concepts and analytic approaches

Study design:Literature review.Objectives:Utilizing individuals with spinal cord injury (SCI) as a representative population for physical disability, this paper: (1) reviews the history of the concept of secondary conditions as it applies to the health of individuals aging with long-term disabilities; (2) proposes a definition of secondary health conditions (SHCs) and a conceptual model for understanding the factors that are related to SHCs as individuals age with a disability; and (3) discusses the implications of the model for the assessment of SHCs and for developing interventions that minimize their frequency, severity and negative effects on the quality of life of individuals aging with SCI and other disabilities.Methods:Key findings from research articles, reviews and book chapters addressing the concept of SHCs in individuals with SCI and other disabilities were summarized to inform the development of a conceptual approach for measuring SCI-related SHCs.Conclusions:Terms used to describe health conditions secondary to SCI and other physical disabilities are used inconsistently throughout the literature. This inconsistency represents a barrier to improvement, measurement and for the development of effective interventions to reduce or prevent these health conditions and mitigate their effects on participation and quality of life. A working definition of the term SHCs is proposed for use in research with individuals aging with SCI, with the goal of facilitating stronger evidence and increased knowledge upon which policy and practice can improve the health and well-being of individuals aging with a disability.

Prevalence and Associated Features of Depression and Psychological Distress in Polio Survivors

This cross-sectional study examines the prevalence of psychological distress and depression among 116 polio survivors. It investigates demographic, medical, and coping differences between subjects with (n = 17) and without (n = 99) these symptoms. Subjects were administered the Brief Symptom Inventory (BSI), the Coping with Disability Inventory (CDI), and a questionnaire about their polio histories. The BSI provided measures of psychological distress and depression that defined the subgroups. The CDI assessed coping behaviors. BSI scores for the overall sample were within the normal range indicating no major distress, depression, nor elevated somatic complaints. Several significant differences were found between the two subgroups. On average, depressed/distressed subjects reported an increase in pain (p < .01) and further deterioration of their medical status since the time of their physical best subsequent to the onset of polio (p < .01). They consistently rated their health as poorer than did nondepressed/nondistressed subjects (p < .001). They also reported less satisfaction with life and their occupational status (p < .001) and displayed poorer coping behaviors combined (p < .001). Selected variables such as life satisfaction, pain, decrease in activity, and current living situation accounted for 51% of the variance when predicting distress and depression among this group of polio survivors.

The effects of insurance benefits coverage on functional and psychosocial outcomes after spinal cord injury

This retrospective study examined the effects of type of payor (ie, catastrophic, Medicaid, and private) and extent of benefits and independent living (IL) resources received on functional and psychosocial outcomes after spinal cord injury (SCI). One hundred seventy SCI persons with dates of injury from 1985 to 1990 and who were on average 4 years after their initial discharge from rehabilitation participated in the study. Benefits and resources received from discharge to 2 years post-injury in housing, transportation, personal care assistance (PCA), and equipment were assessed. Outcome variables included measures of psychological distress, self-esteem, and participation in physical and work/school activities. Extent of benefits received after SCI was found to be both a function of source of payor and of subjects neurological classification. While an effect of total benefits received could not be detected on SCI subjects post-discharge physical activity, and benefits paid by self only were associated with physical activity. Transportation benefits received and type of payor were positively associated with work/school outcomes. Younger subjects, sponsored by private payors, and with incomplete injuries were more likely to be working or going to school after SCI. Benefits and payor were also associated with psychological distress. Privately sponsored subjects were less distressed, whereas those sponsored by Medicaid were most distressed. Extent of benefits received was found to be inversely associated with distress and self-esteem. Persons with lower self-esteem received more postdischarge benefits, whereas those who paid for their own benefits and those who received communication equipment benefits paid by insurance, reported higher self-esteem. Implications for possible policy changes based on these results are discussed.

Overview of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system

Abstract Context/Objective The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue. Design Classical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample (n = 877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI (n = 245). Setting Five Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States. Participants Adults with traumatic SCI. Interventions n/a Outcome Measures n/a Results The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL). Conclusion The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.

Cut Point Determination in the Measurement of Pain and Its Relationship to Psychosocial and Functional Measures After Traumatic Spinal Cord Injury: A Retrospective Model Spinal Cord Injury System Analysis

OBJECTIVEnTo evaluate potential pain cutoff scores reflecting mild, moderate, and severe pain in the spinal cord injury (SCI) population and determine the relationship between the derived cutoff scores and both psychosocial and functional outcome measures.nnnDESIGNnRetrospective analysis.nnnSETTINGnSCI Model Systems.nnnPARTICIPANTSnPersons (N=6096; age >18y) with traumatic SCI (American Spinal Injury Association Impairment Scale [AIS] grades A-D; injured in 1973-2008).nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnNumeric rating scale (NRS) of pain severity (11 points), NRS of pain interference (5 points), Satisfaction With Life Scale, Patient Health Questionnaire-9, Craig Handicap Assessment and Reporting Technique Short-Form (CHART-SF), motor component of the FIM (M-FIM), and employment.nnnRESULTSnThe best set of pain severity cutoff points are 1 to 3, 4 to 6, and 7 to 10. This was validated by randomly assigning sample members to 2 groups and replicating. There were significant differences in all outcomes as a function of pain severity grouping, although they explained little of the variance in M-FIM and CHART-SF Physical Independence scale scores. Neurologic status differed significantly between pain groups, with incongruence between pain severity and interference in people in the AIS grade D group, who reported the greatest pain interference and least pain severity.nnnCONCLUSIONnPain severity can be categorized into groups that reflect pain interference. These groupings differentiate psychosocial well-being better than activity limitations. They do not provide a comprehensive pain assessment, for which pain type, location, and interference are likely to be necessary.