Caregiver-identified needs and barriers to care in Parkinson's disease.

Perceptions of service needs and barriers to care among caregivers of individuals with Parkinson's disease have not been well explored. The purpose of this study was to assess caregiver perceptions of their own and patients' medical and supportive service needs. An online and paper survey was disseminated to a sample of caregivers (n = 66) of individuals with Parkinson's disease. Although caregivers reported positive quality of life and adjustment to caregiving, nearly half of the sample endorsed feeling stressed about caregiving. Caregivers reported that services for symptom management, coping with changes in lifestyle, future planning, relationships, and cognition, and wellness strategies were most needed. Reported barriers to patients accessing care included limited service availability and a lack of insurance coverage for services. These findings suggest a need to improve access to services for patients and increased efforts to promote caregiver wellness at movement disorder specialty clinics.

Leisure-time physical activity, anthropometrics, and body composition as predictors of quality of life domains after spinal cord injury: an exploratory cross-sectional study.

The objective of the current work was to examine the relationships between quality of life (QOL) domains in persons with spinal cord injury (SCI) and their levels of weekly leisure-time physical activity (LTPA), anthropometric variables, and body composition variables. This exploratory cross-sectional study consisted of baseline data collected as part of a randomized clinical trial at a VA Medical Center and SCI center. A convenience sample of 36 community-dwelling persons with SCI participated in the current study. Outcome measures included the World Health Organization Quality of Life Short Form (WHOQOL-BREF), Leisure-Time Physical Activity Questionnaire for People with Spinal Cord Injury (LTPAQ-SCI), anthropomorphic measures (waist, hip, and abdominal circumference), and dual-energy x-ray absorptiometry (DXA) to quantify regional and total body composition. Multiple regression models suggested that engagement in LTPA accounted for 35.7% of the variance in physical health QOL, 33.5% in psychological QOL, 14.2% in social relationships QOL, and 38.2% in environmental QOL. Anthropometric measures accounted for 11.3%, 3.1%, 12.0%, and 6.7% of the variance in these QOL indices, respectively, and DXA indices accounted for 18.7%, 17.5%, 27.4%, and 21.9%. Within these models, the number of minutes of heavy LTPA per day uniquely predicted physical health QOL, the number of mild LTPA days per week uniquely predicted psychological QOL, and the amount of mild LTPA per day uniquely predicted environmental QOL. Bivariate analyses also suggested that android and trunk fat, as well as supine waist and abdominal circumferences, were positively associated with social relationships QOL. Encouraging individuals with SCI to engage in LTPA may robustly enhance multiple aspects of QOL while reducing the risk for cardiovascular and metabolic morbidities associated with SCI. Moreover, this may lead to a further understanding of how QOL may impact longitudinal intervention trials. The study protocol and procedures were reviewed and approved by the McGuire VA Research Institutional Review Board (IRB# 02152, approval date August 9, 2015; IRB# 02375, approval date May 2, 2018).

Research Participant Recruitment Strategies Among Individuals with Acute Spinal Cord Injury and Their Caregivers: A Pre-Post Study.

STUDY DESIGN: Pre-post study. OBJECTIVE: To evaluate the efficiency of a series of recruitment strategies in a longitudinal study of individuals with SCI and their informal caregivers. Primary strategies included (a) rapport building in advance, (b) warm handoffs from another healthcare provider who already had a relationship with the potential participant, (c) ensuring the potential participant had information about the study prior to the initial contact by the research coordinator (RC), (d) attempting informed consent only when both the patient and informal caregiver were present, and (e) ensuring the RC had at least 30 minutes to explain the study when attempting recruitment. SUMMARY OF BACKGROUND DATA: While a fairly large body of research has been conducted on general recruitment strategies for clinical trials, very little has examined the efficacy of these strategies within neurological conditions and almost none within SCI. METHODS: Individuals with an acute SCI and their informal caregivers were recruited from acute spinal cord rehabilitation units with a Veteran's Affairs medical center and an academic medical center in the same urban area. Of 49 eligible dyads, 41 were approached for consent, with 27 consenting to join the study (9 from the academic medical center; 18 from the VA). RESULTS: There was a significant difference in enrollment rates after implementing the recruitment strategies, χ2(1) = 7.572, P = 0.006, with the per month participant enrollment rate nearly doubling after implementation. CONCLUSION: Using a multiteam and multidisciplinary approach to recruitment may increase the likelihood that individuals with an acute SCI and their caregivers enroll in research.Level of Evidence: 3.

Resilience After Spinal Cord Injury: A Scoping Review.

Rehabilitation medicine has recently embraced resilience, and research in this area has surged within the past decade. Several systematic reviews of resilience research have been conducted in traumatic brain injury, chronic diseases, and stroke populations. A decade into research into the role of resilience in the lives of individuals with spinal cord injury, a review of the current state of the research literature is needed to identify trends and knowledge gaps. The aims of this scoping review were (a) to classify study methods and designs used for resilience research in spinal cord injury to date, (b) to describe how researchers have defined "resilience," and (c) to identify knowledge gaps and suggest future directions for research. Literature searches were conducted to identify English-language, peer-reviewed articles on resilience and spinal cord injury. Most of the 40 studies reviewed were correlational using cross-sectional data, although descriptive, longitudinal, qualitative, test development, and intervention studies and review articles were found as well. As is the case outside of rehabilitation medicine, there is considerable definitional and conceptual heterogeneity that limits our ability to apply resilience research to clinical practice. Moving forward, the field needs model-driven, longitudinal research that offers clear, conceptual distinctions between risk and protective factors, processes, and outcomes.

Mental disorder prevalence among U.S. Department of Veterans Affairs outpatients with spinal cord injuries.

OBJECTIVES: Depression and other mental disorders are more prevalent among individuals living with spinal cord injury (SCI) than in the community at large, and have a strong association with quality of life. Yet little is known about the prevalence and predictors of mental disorders among U.S. military Veterans living with SCI. The primary aim of this study was to present an estimate of mental disorder point prevalence in this population. The secondary aim was to examine the relationship of mental disorders to demographics, injury characteristics, and other clinically relevant features such as impairment from mental health problems and life satisfaction. DESIGN: Cross-sectional. SETTING: A SCI & Disorders Center at a U.S. Veterans Affairs Medical Center. PARTICIPANTS/METHODS: Administrative and medical records of 280 Veterans who attended annual comprehensive SCI evaluations were evaluated. Demographics, injury characteristics, self-reported mental and emotional functioning (i.e. SF-8 Health Survey), and clinician-determined mental disorder diagnoses were attained. RESULTS: Overall, 40% of patients received at least one mental disorder diagnosis, most commonly depressive disorders (19%), posttraumatic stress disorder (12%), and substance or alcohol use disorders (11%). Several patient characteristics predicted mental disorders, including age, racial minority identity, non-traumatic SCI etiology, and incomplete (i.e. AIS D) vs. complete injury. Mental disorders were associated with greater impairment from health and mental health-related problems and less satisfaction with life. CONCLUSIONS: Mental disorders are common among outpatients receiving VA specialty care for SCI. These findings highlight the importance of having adequate and effective available mental health services available for Veterans with SCI.

Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf): Psychometrics and association with mental health among U.S. military veterans with spinal cord injury.

OBJECTIVE: Cognitive appraisals, that is, interpretations of what is observed and the personal relevance attributed to those observations, affect one's behavior and well-being. Despite the centrality of appraisals in the transactional model of stress and coping, the application of spinal cord injury (SCI)-specific appraisals to adjustment is a recent development. This study examined the psychometric properties of a measure of SCI-specific appraisals, the Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf). METHOD: A retrospective study using clinical data from SCI annual evaluations at a U.S. Department of Veterans Affairs medical center was employed (N = 262). RESULTS: Findings supported the ADAPSS-sf's 2-factor structure of catastrophic negativity and determined resilience. SCI appraisals were associated with mental health concerns, mental disorders, life satisfaction, racial minority status, age, SCI severity (based on the American Spinal Injury Association Impairment Scale [AIS]), and SCI etiology (traumatic or nontraumatic). Counterintuitively, those with less severe injuries (i.e., AIS D) had the greatest catastrophic negativity. Although veterans with SCI were heterogeneous in their appraisals, it is encouraging that they tended to endorse determined resilience and disavow catastrophic negativity. CONCLUSIONS: The ADAPSS-sf demonstrated many desirable characteristics, including brevity, convergent validity, and face-valid content. An implication of this study is that to understand the adjustment experience, one must look beyond injury severity and impairment to the individual's personal and subjective experience of SCI. The ADAPSS-sf offers clinicians and researchers a potentially valuable tool to assess SCI appraisals and personalize treatment. (PsycINFO Database Record

Mediational Model of Multiple Sclerosis Impairments, Family Needs, and Caregiver Mental Health in Guadalajara, Mexico.

Individuals with multiple sclerosis (MS), especially those living in Latin America, often require assistance from family caregivers throughout the duration of the disease. Previous research suggests that family caregivers may experience positive and negative outcomes from providing care to individuals with MS, but few studies have examined the unmet needs of individuals providing care to family members with MS and how these unmet needs may mediate the relationship between MS symptoms and caregiver mental health. The current study examined the relationships among MS impairments (functional, neurological, cognitive, behavioral, and emotional), unmet family needs (household, informational, financial, social support, and health), and caregiver mental health (satisfaction with life, anxiety, burden, and depression) in a sample of 81 MS caregivers from Guadalajara, Mexico. A structural equation model demonstrated the mediational effect of unmet family needs on the relationship between MS impairments and caregiver mental health. These findings suggest that intervention research on MS caregivers in Latin America may consider focusing on caregiver mental health problems by addressing unmet family needs and teaching caregivers ways to manage the impairments of the individual with MS.

College-age adults' religiosity, family functioning and values, and willingness to provide care for a relative with a chronic health condition.

PURPOSE/OBJECTIVE: The population of adults age 65 and older is increasing at a faster rate than the rest of the U.S. POPULATION: As such, older adults, particularly those with chronic health conditions and disabilities, will require informal care from today's college-age adults. At present, there is no research examining factors predicting college-age individuals' willingness to provide care for a family member with a chronic condition. The purpose of this study was to examine the pattern of associations among college-age adults' religiosity, family functioning, family values, and willingness to provide care for a family member with a chronic health condition. Research Method/Design: A sample of 330 undergraduate students from a major public research university completed an online survey with measures assessing these constructs. Four different structural equation models were tested. RESULTS: The fourth model revealed good fit indices and was therefore retained. This model found that religiosity and family values were positively and uniquely associated with willingness to provide care. Family functioning yielded a significant indirect effect through family values. CONCLUSIONS/IMPLICATIONS: The current study findings suggest religiosity, family functioning, and family values play a role in willingness to provide care, and thus, future researchers should target these constructs for intervention-based studies. (PsycINFO Database Record

Patient-reported Needs, Non-motor Symptoms, and Quality of Life in Essential Tremor and Parkinson's Disease.

BACKGROUND: Non-motor symptoms, quality of life, service needs, and barriers to care of individuals with movement disorders are not well explored. This study assessed these domains within a sample of individuals with essential tremor (ET) and Parkinson's disease (PD). METHODS: A survey exploring symptoms, needs, and barriers to care was disseminated to a convenience sample (N = 96) of individuals with a primary diagnosis of ET (N = 19) or PD (N = 77). RESULTS: Similarities in overall quality of life and impact on daily functioning were found across individuals with ET and PD. Noteworthy differences included endorsement of different types of service needs and utilization patterns and fewer non-motor symptoms reported among those with ET (M = 6.1, SD = 2.4) than those with PD (M = 10.4, SD = 3.4). Non-motor symptoms significantly impacted movement disorder-related quality of life for both diagnostic groups, but this relationship was stronger for individuals with ET, t(12) = 3.69, p = 0.003, ß = 0.73 than with PD, t(56) = 4.00, p<0.001, ß = 0.47. Individuals with ET also reported higher rates of stigma (31.6% vs. 7.8%) and greater impact of non-motor symptoms on emotional well-being, R (2) = 0.37, F(1, 13) = 7.17, p = 0.020. DISCUSSION: This is the first study to describe and compare the needs, barriers to care, and impact on quality of life of two distinct movement disorder groups. Our results support the recent efforts of the field to identify interventions to address the non-motor symptoms of movement disorders and indicate need for greater appreciation of the specific differences in symptoms and quality of life experienced across movement disorder diagnoses.