Claire Z. Kalpakjian

Perceived barriers to exercise in people with spinal cord injury.

Scelza WM, Kalpakjian CZ, Zemper ED, Tate DG: Perceived barriers to exercise in people with spinal cord injury. Am J Phys Med Rehabil 2005;84:576–583. Objective:To identify barriers to physical fitness faced by individuals with spinal cord injury preventing them from participating in a physical fitness program. Design:In this cross-sectional study, a survey of barriers to exercise was administered to 72 individuals with spinal cord injury. Results:Although 73.6% of the participants expressed an interest in an exercise program, less than half (45.8%) were currently active in an exercise program. Less than half (47.2%) reported that their physician had recommended an exercise program for them. The most frequently cited concerns about barriers to exercise fell into three areas: (1) intrapersonal or intrinsic (e.g., lack of motivation, lack of energy, lack of interest), (2) resources (e.g., cost of an exercise program, not knowing where to exercise), and (3) structural or architectural (e.g., accessibility of facilities and knowledgeable instructors). More individuals with tetraplegia reported concerns over exercise being too difficult and that health concerns kept them from exercising. Greater number of concerns was significantly related to higher levels of perceived stress. Conclusions:People with spinal cord injury face multiple barriers to physical fitness in functional, psychological, and architectural domains. Identification of these barriers can facilitate the participation of individuals with spinal cord injury in an exercise program, improving long-term health and wellness.

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.

A Longitudinal Study of Depression From 1 to 5 Years After Spinal Cord Injury

OBJECTIVE To describe rates of probable major depression and the development and improvement of depression and to test predictors of depression in a cohort of participants with spinal cord injury (SCI) assessed at 1 and 5 years after injury. DESIGN Longitudinal cohort study. SETTING SCI Model System. PARTICIPANTS Participants (N=1035) who completed 1- and 5-year postinjury follow-up interviews from 2000 to 2009. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURE Probable major depression, defined as Physician Health Questionnaire-9 score of 10 or higher. RESULTS Probable major depression was found in 21% of participants at year 1 and 18% at year 5. Similar numbers of participants had improvement (25%) or worsening (20%) of symptoms over time, with 8.7% depressed at both 1 and 5 years. Increased pain (odds ratio [OR], 1.10), worsening health status (OR, 1.39), and decreasing unsafe use of alcohol (vs no unsafe use of alcohol; OR, 2.95) are risk factors for the development of depression at 5 years. No predictors of improvement in depression were found. CONCLUSION In this sample, probable major depression was found in 18% to 21% of participants 1 to 5 years after injury. To address this high prevalence, clinicians should use these risk factors and ongoing systematic screening to identify those at risk for depression. Worsening health problems and lack of effective depression treatment in participants with SCI may contribute to high rates of chronic or recurrent depression in this population.

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.

Describing quality of life and psychosocial outcomes after traumatic brain injury.

Kalpakjian CZ, Lam CS, Toussaint LL, Hansen Merbitz NK: Describing quality of life and psychosocial outcomes after traumatic brain injury. Am J Phys Med Rehabil 2004;83:255–265. Objective To describe the quality of life (QOL) and psychosocial outcomes of a sample of adults with traumatic brain injury in 50 community dwelling adults with traumatic brain injury and examine the associations among these variables. Design Cross-sectional. Results Mean QOL rating was low average. Standardized measures had acceptable internal reliability and normal distributions in this sample. Subjects had significantly lower QOL and social support, higher negative affect, and similar positive affect and spirituality compared with standardization and other nondisabled samples. They also had a significantly higher level of community integration than other traumatic brain injury samples. Regression analyses suggested that social support, community integration, and positive affect make a unique and significant contribution to the QOL variance with R2 of 0.492. The addition of spirituality reduced their respective unique variance, reducing positive affect to nonsignificant levels due to their high intercorrelation. Conclusions Findings suggest that this sample experiences a wide range of QOL. Factors significantly associated with good QOL include community integration, positive affect, and social support; demographic variables had virtually no association with QOL. Evaluation of the sample’s response to standardized scales not designed for a traumatic brain injury population support their use in similar QOL investigations.

Measuring Depression in Persons With Spinal Cord Injury: A Systematic Review

Abstract Background/Objective: Depression has been studied extensively among people with spinal cord injury (SCI). However, basic questions persist regarding the reliability and validity of depression measurement in the context of SCI. The objective of this study was to evaluate the state of knowledge of depression measurement in persons with SCI. Methods: English-language peer-reviewed citations from MEDLINE, CINAHL, PsycINFO, ProQuest, Google Scholar, and Web of Science from 1980 to present. Two reviewers screened 377 abstracts on SCI and depression topics to identify 144 containing classifiable psychometric data. All 144 were reviewed by 6 reviewers. Twenty-four studies reporting psychometric data on 7 depression measures in SCI samples were identified, including 7 validity studies. Results: Reliability data were limited to internal consistency and were consistently good to excellent across 19 studies. Validity data were limited to concurrent validity, construct validity, and/or clinical utility in 10 studies. Measures were comparable with respect to internal consistency, factor structure, and clinical utility. Results are limited to peer-reviewed, English literature, and studies were not judged for quality. Conclusions: Greater attention should be paid to the psychometric evaluation of established measures. Although existing evidence may not justify universal screening, we recommend depression screening in clinical practice when patients may be seen by nonpsychology personnel. There is insufficient evidence to recommend one screening measure over another. Therefore, selection of measures will depend on clinician preferences. Psychometric studies are needed to show test-retest reliability, criterion validity, and sensitivity to change to improve depression recognition and treatment.

Gynecologic Issues of Adolescents with Down Syndrome, Autism, and Cerebral Palsy

STUDY OBJECTIVE The gynecologic issues of adolescents with disabilities are understudied. The purpose of this study was to identify and compare the presenting complaints, treatments, and follow-up of adolescent girls with Down syndrome (DS), autism, and cerebral palsy (CP) presenting to a specialized gynecologic clinic for women with developmental disabilities. SETTING Outpatient gynecology clinic. PARTICIPANTS Forty four adolescents (<21 y); 13 with DS, 14 with autism, and 17 with CP who presented to the clinic from 1999 to 2006. INTERVENTIONS None. MAIN OUTCOME MEASURES A retrospective review of the electronic medical records to collect data on age at presentation to clinic, ethnicity, menstrual history, chief complaint, treatment, and follow-up. RESULTS Mean age at presentation to clinic was 15+/-3.5 years, and age of menarche was 12.5+/-2 years; age at menarche did not significantly differ between groups. The most frequent complaints were irregular bleeding (n=10) and mood/behavioral changes (n=6). Girls with autism were significantly (chi(2)=8.89, P=.012) more likely to present with behavioral issues than the other 2 groups. Initial management for the behavior issues in the autism group included nonsteroidal anti-inflammatory drugs (NSAID), oral contraceptives, and education. CONCLUSION The most common gynecologic complaints of adolescent girls with DS, autism, and CP centered on menstruation and mood disorders. Patients with autism were more likely to present with behavioral issues related to the onset of periods.

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.

Patient Health Questionnaire-9 in Spinal Cord Injury: An Examination of Factor Structure as Related to Gender

Abstract Background/Objective: Despite the attention depression after spinal cord injury (SCI) has received, research and clinical practice have been hampered by inadequate emphasis on reliable and valid measurement. Assessment of symptoms in persons with SCI is challenged by the presence of “transdiagnostic” symptoms and unexamined effects of gender. The objective of this study was to examine the factor structure of the Patient Health Questionnaire-9 (PHQ-9; the 9-item depression scale of the Patient Health Questionnaire) and determine whether the structure replicates across gender. Methods: A total of 1,168 women and men were matched on level/completeness of SCI, follow-up year, and age to create 584 pairs. Exploratory factor analysis examined 1- and 2-factor models and congruence in 2 randomly split half samples to establish congruence of the factor solution and replication across gender. Results: The 1- and 2-factor solutions fit the structure of the items accounting for 41 % to 51 % of original item variance. Congruence between random samples was uniformly high for the 1-factor solution (r = 0.791-0.948) but variable for the 2-factor solution. Although congruence was high for the combined sample and men (r= 0.90-0.97 and 0.71-0.94, respectively), it was variable for women (r= 0.29-0.85). Conclusions: Although there was support for the 1-factor structure of the PHQ within and between sexes, the low congruence between sexes and within women for the 2-factor structure indicates potentially important differences about how certain symptoms may be experienced or interpreted differently by men and women with SCI. Future research should focus on where sexes diverge in cognitive, affective, and somatic dimensions of depressive symptoms and whether sex-specific or sex-neutral measures are warranted.

Validity of the Patient Health Questionnaire-9 in Assessing Major Depressive Disorder During Inpatient Spinal Cord Injury Rehabilitation

OBJECTIVE To investigate the validity of the Patient Health Questionnaire-9 (PHQ-9) depression screening measure in people undergoing acute inpatient rehabilitation for spinal cord injury (SCI). DESIGN We performed a blinded comparison of the PHQ-9 administered by research staff with the major depression module of the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (SCID) conducted by a mental health professional. SETTING Inpatient rehabilitation units. PARTICIPANTS Participants (N=142) were patients undergoing acute rehabilitation for traumatic SCI who were at least 18 years of age, English speakers, and without severe cognitive, motor speech, or psychotic disorders. We obtained the SCID on 173 (84%) of 204 eligible patients. The final sample of 142 patients (69%) consisted of those who underwent both assessments within 7 days of each other. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES PHQ-9 and SCID major depression module. RESULTS Participants were on average 42.2 years of age, 78.2% men, and 81.7% white, and 66.9% had cervical injuries. The optimal PHQ-9 cutoff (≥11) resulted in 35 positive screens (24.6%). Key indices of criterion validity were as follows: sensitivity, 1.00 (95% confidence interval [CI], .73-1.00); specificity, .84 (95% CI, .76-.89); Youden Index, .84; positive predictive value, .40 (95% CI, .24-.58); and negative predictive value, 1.00 (95% CI, .96-1.00). The area under the receiver operator curve was .92, and κ was .50. Total PHQ-9 scores were inversely correlated with subjective health state and quality of life since SCI. CONCLUSIONS The PHQ-9 meets criteria for good diagnostic accuracy compared with a structured diagnostic assessment for major depressive disorder even in the context of inpatient rehabilitation for acute traumatic SCI.