Impact of comprehensive gynecologic services on health maintenance behaviours among women with spinal cord injury.

PURPOSE: Women with spinal cord injury (SCI) and other physical disabilities often lack access to appropriate gynecologic health care and may be at higher risk for preventable gynecologic diseases and other health problems. The purpose of this study was to investigate the effects of a women's health clinic that was established to meet the needs of women with SCI and other disabilities. Specifically, this study examined the effect of clinic participation upon the rate of preventive gynecologic health care behaviours and assessed the relationship between physical and emotional functioning in women with SCI and other disabilities. METHOD: Participants (n =28) were women who completed surveys immediately prior to participation in the clinic, and at 3 and 12 month follow-ups. RESULTS: Results indicated a trend towards increased frequency of breast self-exam three months after initial participation in the clinic (p =0.11). Other rates of health promoting behaviours (exercise, diet and mammography) did not increase. Results also indicated that although physical functioning and life satisfaction were not related, women in this study did experience moderate to high levels of psychological distress. CONCLUSION: Results indicate that whole-woman health care may be important to increasing certain health behaviours among women with disabilities. Implications for comprehensive treatment are discussed.

Depression measures in outcomes research.

OBJECTIVE: To review critically the measures used to screen for depression for disability outcomes research and to recommend measures and needed research. DATA SOURCES: Review of literature pertaining to the development, testing, and use of depression measures for outcomes research. STUDY SELECTION: English language literature from scientists from a broad range of disciplines and research settings, focusing mainly on the Brief Symptom Inventory and the Center for Epidemiology Study-Depression scale. DATA EXTRACTION: A literature review was completed through MEDLINE. Based on the review, instruments were selected according to their use among people with disability and the reliability and validity of the instrument. Two instruments were selected for a complete review, and 5 instruments were selected for a brief review. DATA SYNTHESIS: A critical review of measures that have been and may be used to measure depressive symptomatology among people with disability. CONCLUSIONS: Screening measures of depression are easy to administer and score. Almost all have low respondent burden and good face validity, thereby contributing to a high participation rate for most studies. Some problems exist with the application of these instruments to people with disability (ie, overlap of symptoms of depression and indicators of physical impairment).

A model of outcomes research: spinal cord injury.

OBJECTIVE: To use spinal cord injury (SCI) care and research as a paradigm to illustrate how the principles and practices of outcomes research have been and can be applied to the sequelae of a specific disability. DATA SOURCES: Review of data sources and literature pertaining to outcomes of SCI. STUDY SELECTION: English language literature, health status and health services research agencies, academic and governmental research, and surveillance settings. DATA EXTRACTION: A critical review of measures that have been and may be used to measure the outcomes of SCI. Special attention was paid to data sources; the need for methodologic accommodations: the research balance between generic and condition-specific methods; and the measurement outcomes that are highly relevant to people with SCIs. DATA SYNTHESIS: There is a substantial research record related to the natural history, rehabilitation, survival, and long-term social reintegration of people with SCI, but relatively less addressing widely used generic health outcomes. CONCLUSION: Contemporary outcomes research is relevant to people with SCI and those who provide treatment. One area of special attention is the occurrence of secondary conditions. To a large extent, SCI outcomes research can use conventional methods and generic instruments. There also is a need to modify research methods and to refine and apply some measures specific to people with SCI.

Medical rehabilitation length of stay and outcomes for persons with traumatic spinal cord injury--1990-1997.

OBJECTIVES: To describe changes in acute and rehabilitation length of stay (LOS) for persons with traumatic spinal cord injury (SCI), describe predictors of LOS, and explore year-1 anniversary medical and social outcomes. DESIGN: Longitudinal, exploratory study of patients with SCI. SETTING: Eighteen Model Spinal Cord Injury Centers across the United States. SAMPLE: A total of 3,904 persons discharged from the Model Systems between 1990 and 1997 who had follow-up interviews at 1 year postinjury. MAIN OUTCOME MEASURES: Rehabilitation LOS; injury anniversary year-1 presence of pressure ulcers; incidence of rehospitalization; community or institutional residence; and days per week out of residence. RESULTS: Acute rehabilitation LOS declined from 74 days to 60 days. Discharges to nursing homes and rehospitalizations increased between 1990 and 1997. Linear regression showed that lower admission motor Functional Independence Measure (FIM) scores, year of discharge from the Model System, method of bladder management, tetraplegia, race, education, marital status, discharge disposition, and age were related to longer LOS. At first anniversary, logistic regressions revealed that lower discharge motor FIM, injury level, and age were related to the presence of pressure ulcers, rehospitalization, residence, and time spent out of residence. Of those discharged to nursing homes, 44% returned to home by year 1, and these individuals had higher functional status and were younger. DISCUSSION: High functional status is associated with shorter LOS, discharge to the community, and time spent out of residence, indicating efficiency in the system. For 44.4% of individuals one or more of the following outcomes were observed by first year anniversary: rehospitalization; residing in a skilled nursing facility; having pressure ulcers; or infrequently leaving one's residence.

Access to health care services among people with disabilities receiving Medicaid.

Few data exist describing Medicaid's success in providing health care services to people with disabilities. The access to care survey from the Medical Expenditures Panel Survey was used to collect access data from 502 individuals with disabilities in central Missouri receiving Medicaid under fee-for-service reimbursement. Nearly all of the respondents had a usual source of care, but two-thirds reported difficulties obtaining a needed health care service. Dental, optometric, and personal assistance services were most difficult to obtain. Provider non-participation, non-coverage of a service, and coverage restrictions were the most frequently cited barriers to obtaining care. Results suggest that people with disabilities have difficulty accessing needed health care services through the Missouri Medicaid fee-for-service system.

A meta-analysis of fibromyalgia treatment interventions.

OBJECTIVE: To evaluate and compare the efficacy of pharmacological and nonpharmacological treatments of fibromyalgia syndrome (FMS). METHODS: This meta-analysis of 49 fibromyalgia treatment outcome studies assessed the efficacy of pharmacological and nonpharmacological treatment across four types of outcome measures-physical status, self-report of FMS symptoms, psychological status, and daily functioning. RESULTS: After controlling for study design, antidepressants resulted in improvements on physical status and self-report of FMS symptoms. All nonpharmacological treatments were associated with significant improvements in all four categories of outcome measures with the exception that physically-based treatment (primarily exercise) did not significantly improve daily functioning. When compared, nonpharmacological treatment appears to be more efficacious in improving self-report of FMS symptoms than pharmacological treatment alone. A similar trend was suggested for functional measures. CONCLUSION: The optimal intervention for FMS would include nonpharmacological treatments, specifically exercise and cognitive-behavioral therapy, in addition to appropriate medication management as needed for sleep and pain symptoms.

Disease and family contributors to adaptation in juvenile rheumatoid arthritis and juvenile diabetes.

OBJECTIVE: Research in the areas of pediatric rheumatology and pediatric chronic illness has emphasized comprehensive models of adaptation involving risk and resistance factors. This study examined adaptation, within this framework, among a large sample of children with chronic illness and children without chronic illness. METHODS: A comprehensive battery of adaptation measures was administered to a sample of 107 children with juvenile rheumatoid arthritis, 114 children with insulin-dependent diabetes mellitus, and 88 healthy controls. RESULTS: Medical diagnosis was associated with mothers' depression and a composite measure of parental (mother and father) distress and passive coping. Children's emotional and behavioral functioning was not related to medical diagnosis, but mothers' depression and parental distress were associated with child behavior problems. CONCLUSION: Because parental distress was associated with child functioning, interventions to ameliorate parental distress may have beneficial effects on the children's behavior and on parents' reactions to their children.

Trajectories of adaptation in pediatric chronic illness: the importance of the individual.

This study used individual growth modeling to examine individual difference and group difference models of adaptation. The adaptation of 27 children with juvenile rheumatoid arthritis (JRA) and 40 children with insulin-dependent diabetes mellitus (IDDM) was tracked for 18 months from diagnosis. A control group of 62 healthy children was followed over the same time period. Clustering procedures indicated that child and family adaptation could be described by a number of distinct adaptation trajectories, independent of diagnostic group membership. In contrast, parental adaptation trajectory was associated with diagnostic group membership and control over disease activity for the JRA group and with diagnostic group membership for healthy controls. The observation of common patterns across trajectory sets, as well as the finding that trajectories were differentially related to a number of variables of interest, support the use of trajectories to represent adaptation to chronic disease.

A family retreat as a comprehensive intervention for children with arthritis and their families.

OBJECTIVE: Family resources and coping skills are important to adaptation to pediatric chronic illness. Psychological and educational interventions have been found to enhance the coping skills of children with juvenile rheumatic disease (JRD) and their families. We examined the efficacy of a 3-day family retreat as a multidisciplinary, comprehensive treatment. METHODS: Children with JRD and their caregivers completed questionnaires assessing the children's behavioral and emotional functioning, pain, strain on caregivers' work and leisure activities, and caregivers' psychological distress before and 6 months after the family retreat. Principal caregivers were both parents for 16 children, mothers only for 10 children, and an aunt for 1 child. RESULTS: Improvements were found in children's emotional functioning, strain on caregivers' work, and strain on caregivers' leisure activities. Reductions in reported pain were not consistently revealed. CONCLUSIONS: Family retreats are an efficacious, multidisciplinary approach to helping families of children with JRD cope with the disease and its manifestations. Importantly, retreats offer a comprehensive intervention package that might not be available to families on an individual basis.

Sex differences in anger expression, depressed mood, and aggression in children and adolescents.

The current study examined anger expression styles and their relationship to levels of depressed mood and aggressive behavior in male and female children and adolescents. Measures of anger, anger expression, and depressed mood were collected from both children and their parents. Hierarchical multiple regressions revealed that anger expression significantly predicted sadness but not aggression for females, after accounting for age and anger level. Among males, anger expression was important in predicting aggression but not sadness, whereas age and anger level best predicted sadness. These results suggest that age, anger level, and anger expression may be risk factors for depression and aggression among children and adolescents. Sex appears to be an important factor in anger expression styles and related depression and aggressive behavior.

Comparing neuropsychological and psychiatric evaluation of competency in rehabilitation: a case example.

This report describes the case of a 20-year-old man who sustained a gunshot wound to the forehead, resulting in traumatic brain injury and C2 ventilator-dependent quadriplegia. Issues of personal control and autonomy typified his psychological adjustment. The question of competency to refuse medical treatment arose when he disallowed intervention for a suspected ear infection not confirmed by culture. Subsequently, the patient was alternately described as incompetent by a psychiatrist and competent by a medical ethics review panel. These decisions are interpreted within the context of existing medical-legal literature and historical precedent of competency in civil law. Central to competency evaluation is the patient's ability to recognize that a decision-making process is required, to review the pros and cons of various options, and to communicate a decision. Importantly, this decision need not be in accordance with the opinion of family or the health care team. Neuropsychological screening indicated the patient's cognitive abilities were within functional limits, and he subsequently agreed to treatment after experiencing pain and fever, and learning of a positive culture. It is concluded that a two-pronged neuropsychological evaluation of competency based on the patient's information processing capabilities is most appropriate in medical rehabilitation settings.

Facilitating adaptation to juvenile rheumatic disease with family retreats.

Children with juvenile rheumatic disease (JRD) and their families face numerous challenges associated with disease symptomatology and treatment. Although many families cope well with these challenges, many are at risk for poor outcome. Children with JRD may have emotional, behavioral, and academic difficulties. Their parents also may have emotional distress, as well as marital conflict and reduced social activity. Identified risk factors for poor outcome include compromised family coping, poor adherence to treatment, and unmet academic needs. These risk factors are reviewed and an initial assessment of the effect of a family retreat on family coping is described. Twenty-seven families completed a coping questionnaire first at a family retreat and again 3 months later. Improvements were observed in reported ability to communicate about JRD, knowledge of arthritis, certainty of disease course, and ability to overcome difficulties related to JRD. Family retreats hold the potential to significantly enhance children's and caregivers' adaptation to JRD.

Predicting pain among children with juvenile rheumatoid arthritis.

OBJECTIVE: Children and adolescents with juvenile rheumatoid arthritis (JRA) often report pain as a major symptom that affects their daily activities. Little is known about the factors that contribute to pain, however. Demographic, disease status, and social-psychologic variables were used to predict pain of JRA. METHODS: Participants were 37 girls and 23 boys who were 7 to 17 years old. Measures included the Hopelessness Scale for Children, the Sadness Scale from the Differential Emotions Scale--IV, and the Social Support Questionnaire--Revised. A pain visual analogue scale served as the criterion measure. RESULTS: Reported pain was modestly correlated with disease duration and age. A hierarchical regression indicated that the predictor variables accounted for a modest amount of variance in pain scores. CONCLUSIONS: The results suggest that the factors contributing to pain in children with JRA are different from those in adults with rheumatoid arthritis (RA). Research is needed to identify the psychologic and socioenvironmental variables that influence pain among children with JRA.

Weather, beliefs about weather, and disease severity among patients with fibromyalgia.

OBJECTIVE: This investigation 1) examined the relationships among actual weather, disease severity, and symptoms for individuals with fibromyalgia, 2) assessed subjects' beliefs about weather affecting their symptoms, and 3) examined differences between individuals with high and low "weather sensitivity." METHODS: Eighty-four individuals meeting Yunus' criteria for the diagnosis of fibromyalgia participated. Subjects completed the Weather and Pain Questionnaire (WPQ), the Arthritis Impact Measurement Scales (AIMS), the Symptom Checklist-90-Revised (SCL-90-R), and a Visual Analog Scale (VAS) assessing pain. A tender point index and a myalgic score were also obtained. RESULTS: Subjects reported that weather affected musculoskeletal symptoms predominantly. The strongest relationship was found between weather beliefs and self-reported pain scores. Subjects with high weather sensitivity tended to have more functional impairment and psychological distress.

Assessing anger expression in children and adolescents.

Anger expression styles are associated with psychological and physical well-being among adults. Little is known about the role of anger expression in children's functioning. This lack of knowledge has resulted, in part, from a lack of validated tools for anger expression measurement. The Pediatric Anger Expression Scale-3rd edition (PAES-III; Jacobs, Phelps, & Rohrs, 1989; Jacobs & Kronaizl, 1991) has been proposed as a reliable and valid assessment instrument of anger expression styles. The PAES-III includes three scales that measure anger turned inward, anger expressed outwardly, and anger controlled cognitively or behaviorally. We evaluated the psychometric properties of this instrument when it is administered verbally to children with juvenile rheumatoid arthritis, children with juvenile diabetes mellitus, and healthy children. Internal consistency was adequate for anger-in and anger-out, but marginal for anger-control. Concurrent validity was supported for the total sample. A principal components analysis suggested a four-factor model of anger expression. Overall, the PAES-III was found to have psychometric limitations. Use of a modified PAES-III may facilitate pediatric behavioral medicine research addressing risk factors for maladjustment among children with chronic illnesses.

Neurobehavioral deficits, adolescent traumatic brain injury, and transition to college.

Outcome following traumatic brain injury (TBI) has been frequently evaluated for adults, although there has been minimal research on adolescents with TBI. It has been argued that TBI sequelae may be more difficult for adolescents to adjust to given developmental changes in physical (puberty), interpersonal (self-concept), and environmental domains (transition to college). In addition, it is commonly acknowledged that moderator variables such as psychiatric history, family functioning, substance use, and sexuality impact functional outcome following TBI, although it is often difficult to objectively evaluate these variables. The current study examined relationships among TBI-related deficits, moderator variables, and academic outcomes for six adolescents transitioning to college. The findings suggest that it may not be appropriate to predict functional outcome based solely on objective neuropsychological results. However, moderator variables appear to have a more direct relationship with outcome, depending on the moderator variable and the individual.

Return to work following spinal cord injury.

Return to work following spinal cord injury is achievable for many individuals. Interdisciplinary rehabilitation teams are ideally suited to facilitate an individual's efforts at overcoming the numerous barriers involved in returning to gainful, competitive employment. Many of these barriers are person-specific (i.e., education level), and multifaceted assessment and comprehensive vocational planning are suggested. Other barriers, such as economic disincentives and poor access to needed services, are less easily overcome. Rehabilitation professionals are encouraged to become familiar with recent health and disability policy (i.e., Americans with Disabilities Act) and become proactive in policy formation. There is a significant need for development and testing of model programs to enhance return to work for individuals with spinal cord injury.

Biopsychosocial parameters of disease activity in rheumatoid arthritis.

The purpose of this study was to examine the applicability of a biopsychosocial model for estimating disease activity in rheumatoid arthritis (RA). Sixty-three patients with RA were evaluated at baseline, 3 months, and 6 months. Joint counts were collected as the measure of disease activity. Peripheral blood immunophenotypic subsets, demographic characteristics, and psychological measures were obtained and entered into hierarchical regression analyses, with the joint count as the dependent variable. Immunophenotypic subsets (that is, CD57+/CD16-, HLA-DR+) were predictive of disease activity at all three time intervals. At baseline and 3 months, psychological variables (that is, helplessness and depression) were significantly related to joint counts, and the full model was highly significant. The conclusion was that the biopsychosocial perspective is useful for estimating RA disease activity.

Discriminant and convergent validity of self-report measures of affective distress in patients with rheumatoid arthritis.

The discriminant and convergent validity of several self-report measures of affective distress commonly administered to patients with rheumatoid arthritis (RA) were examined. Fifty-two patients with RA completed the Arthritis Helplessness Index, the Beck Depression Inventory, Spielberger's State Anxiety and Trait Anxiety Inventories, and the Arthritis Impact Measurement Depression and Anxiety Scales. Correlational and factor analyses revealed that the measures of anxiety and depression demonstrated adequate convergent validity but poor discriminant validity. Our results suggest that these measures index a general feeling of distress rather than discrete affective difficulties. The ability of these measures to assess separate problems of anxiety and depression among RA patients is questioned.

Predicting individual differences in pain and functional impairment among patients with rheumatoid arthritis.

Objective measures of disease activity (erythrocyte sedimentation rate and joint swelling), disease severity (radiographic ratings), and psychological variables (coping strategies and affective states) were used to predict the degree of pain and functional impairment that would be experienced by a group of 53 patients who had rheumatoid arthritis. The severity of disease demonstrated no significant relationship to measures of outcome. Multiple regression analyses revealed that psychological variables explained a substantial proportion of the variance in outcome scores, even after disease activity was taken into account. Our study highlights the discrepancies between biomedical measures of disease severity and activity and patient outcome in a rheumatoid arthritis population, and our observations suggest that some of these discrepancies may be explained by psychological variables.