All day in bed, all night in the wheelchair: Unmet attendant care needs of people with spinal cord injury.

CONTEXT: Having dependable attendant care is essential to the health and well-being of those most severely impacted by a spinal cord injury (SCI). Our objective was to identify how often people with SCI who require assistance for transfers either spend a full day in bed or all night in a wheelchair because they do not have paid or unpaid assistance. FINDINGS: Of the 918 respondents, 319 (34.7%) indicated they needed someone's help for basic activities of daily living and 229 (24.9%) relied on someone's assistance for wheelchair-to-bed transfers. Nearly a quarter of participants (22.2%) reported staying in bed all day for at least one once on during the past year, with a median of 10 times among those with at least one day. Men reported a higher rate than women (25.6%, 13.6%) and nonwhites-Hispanics (33.3%) reported a higher percentage than non-Hispanic whites (18.6%). Just over one in every 20 participants (5.3%) reported staying in the wheelchair at least one night because they did not have attendant care, with a median of 2.5 times among those with at least one night. Over one in 10 (11.7%) nonwhites and Hispanics reported at least one overnight in the wheelchair compared with only (3.1%) for non-Hispanic whites. CONCLUSION/CLINICAL RELEVANCE: Staying in bed all day and staying in the chair all night due to lack of attendant care represents a breakdown in the attendant care system and a threat to the well-being of those with SCI, particularly nonwhites and Hispanics, and men.

Perceived impact of the COVID-19 pandemic among people with spinal cord injury: A descriptive study.

Objective: To describe the self-reported impact of the COVID-19 pandemic on the lives of persons with spinal cord injury (SCI). Design: Cross sectional study. Participants: There were a total of 382 adult participants with traumatic SCI of at least one-year duration, all of whom were identified through a state-based surveillance registry in the Southeastern United States. The majority of participants were male (68.4%) and 72% were ambulatory. The average age at the time of the study was 57.7. Main Outcome Measures: Participants completed a self-report assessment (SRA) online or by mail on the impact of COVID-19 on quality-of-life, ability to get daily necessities, and access to healthcare. Results: Over half of the participants (58.9%) reported a negative impact of the pandemic in at least one of five life areas, with community participation being the primary area affected (51.4%). A small portion of individuals had trouble obtaining necessities, with approximately 12% reporting difficulties getting enough or quality food and 8.2% reporting difficulty getting prescription medications. However, 25% reported delaying healthcare procedures because of fear of catching COVID-19. Among those requiring personal assistance, 32% reported a decrease in quality of care and 51.9% relied more on family to assist with their care. Conclusions: The COVID-19 pandemic had multiple negative impacts. Of particular importance were reduced access to healthcare and declines in quality and stability of attendant care, with greater reliance on family. Fear of contracting COVID-19 when accessing routine medical procedures needs to be addressed in future outbreaks.

Job Retention Among Individuals With Multiple Sclerosis: Relationship With Prediagnostic Employment and Education; Demographic Characteristics; and Disease Course, Severity, and Complications.

OBJECTIVE: To identify how prediagnosis employment, education, demographic statuses, and disease factors relate to job retention among people with multiple sclerosis (MS). DESIGN: Cross-sectional logit model. SETTING: Data were collected at an academic Medical University and a specialty hospital, both in the Southeastern US. PARTICIPANTS: People with MS (N=1126) who were employed at the time of MS diagnosis. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Job retention was measured by employment status at the time of follow-up assessment. RESULTS: Prediagnostic educational attainment was predictive of job retention. Among several prediagnostic employment characteristics, only working in production, transportation, and material moving was significantly related to a lower odds of job retention compared with those working in professional/managerial occupations. Aging factors were strongly related to job retention, with declines in job retention observed with increasing age and years since diagnosis. Non-Hispanic Black and Hispanic participants reported lower odds of job retention than non-Hispanic White participants, although there were no observed effects of sex. A significantly lower job retention rate was observed among those with progressive MS, compared with relapsing-remitting. Job retention was also less likely among people with greater MS severity and fatigue. CONCLUSIONS: Job retention strategies and interventions should target people with greater MS complications and severity, as well as non-Hispanic Black and Hispanic persons, because these characteristics are more highly related to job retention than our prediagnostic employment and vocational history.

Social participation as a mediator of the relationships of socioeconomic factors and longevity after traumatic spinal cord injury.

STUDY DESIGN: Cohort study. OBJECTIVE: Previous research has indicated that socioeconomic factors affect longevity after traumatic spinal cord injury (SCI). Our purpose was to evaluate whether social participation mediates the relationship between socioeconomic factors and survival status after SCI. SETTING: Medical university in the southeastern United States. METHODS: Participants (N = 1540) met the following inclusion criteria: traumatic SCI of at least 1-year duration, minimum of 18 years of age, and having residual impairment from SCI. The main outcome measures were a) survival status as of December 31, 2019, identified by the National Death Index (NDI) search, b) socioeconomic status (SES), measured by education, employment status, and family income, and c) participation, measured by marital/relationship status, hours out of bed per day, days leaving home per week, and nights away home during the past year. RESULTS: Thirty nine percent of participants (n = 602) were decreased by the end of 2019. Socioeconomic factors were associated with longevity controlling for demographic, injury characteristics, and health status. However, the association of SES with longevity was mediated by three social participation mobility indicators (hours out of bed, days out of house, and nights away from home), such that SES was no longer significantly related to longevity after inclusion of the participation variables. CONCLUSIONS: Although socioeconomic factors are related to longevity, their relationship appears to be mediated by social participation mobility indicators. Intervention studies are needed to address the modifiable factors that may promote longevity, including promoting an active lifestyle.

Barriers and Facilitators to Employment: A Comparison of Participants With Multiple Sclerosis and Spinal Cord Injury.

OBJECTIVE: To compare self-reported barriers and facilitators to employment among employed and unemployed participants with multiple sclerosis (MS) and spinal cord injury (SCI). DESIGN: Cross-sectional study using self-report assessment obtained by mail or online. SETTING: Medical university in the southeastern United States. PARTICIPANTS: Participants (N=2624) identified from either a specialty hospital or a state-based surveillance system in the southeastern United States, including 1234 with MS and 1390 with SCI. All participants were aged <65 years at the time of assessment. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Self-reported barriers and facilitators to employment. RESULTS: Overall, the MS participants reported more barriers, particularly stress, cognition, and fatigue, whereas those with SCI were more likely to report not having the proper education and training, resources, transportation, and attendant care. Follow-up analyses broken down by employment status indicated that several barriers and facilitators were significantly related to diagnosis for either employed or unemployed participants, but not both. Among those employed, participants with SCI were more likely to report they could not do the same types of jobs as they could pre-SCI and those with MS were more likely to state that they did not know much about jobs for people with disabilities (no differences were noted for these variables among unemployed participants). Unemployed individuals with SCI were more likely to report that the jobs for which they were trained were not accessible. CONCLUSIONS: The primary barriers for individuals with MS revolve around the condition itself, whereas the barriers for SCI appear to be more related to modifiable factors. Vocational rehabilitation specialists need to identify diagnostic-specific barriers to promote employment outcomes.

Employment and Gainful Earnings Among Those With Multiple Sclerosis.

OBJECTIVE: To identify demographic, educational, and disease-related characteristics associated with the odds of employment and earnings among participants with multiple sclerosis (MS). DESIGN: Cross-sectional using self-report assessment obtained by mail or online. SETTING: Medical university in the southeastern United States. PARTICIPANTS: Participants with MS (N=1059) were enrolled from a specialty hospital in the southeastern United States. All were adults younger than 65 years at the time of assessment. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Current employment status and earnings. RESULTS: MS factors were highly related to employment, yet not as strongly to conditional earnings. Those with no symptoms reported 6.25 greater odds of employment than those with severe current symptoms. Compared with those with progressive MS, those with relapsing or remitting had greater odds of employment (odds ratio [OR]=2.24). Participants with no perceived cognitive impairment had 1.83 greater odds of employment than those with moderate to severe perceived cognitive impairment. Those with <10 years since MS diagnosis had 2.74 greater odds of employment compared with those with >20 years since diagnosis. An absence of problematic fatigue was highly related to the probability of employment (OR=5.01) and higher conditional earnings ($14,454), whereas the remaining MS variables were unrelated to conditional earnings. For non-MS variables, education was highly related to employment status and conditional earnings, because those with a postgraduate degree had 2.87 greater odds of employment and $44,346 greater conditional earnings than those with no more than a high school certificate. Non-Hispanic whites had 2.22 greater odds of employment and $16,118 greater conditional earnings than non-Hispanic blacks, and men reported $30,730 more in conditional earnings than women. CONCLUSIONS: MS indicators were significantly associated with employment status including time since diagnosis, fatigue, symptom severity, and presence of cognitive impairment. However, among those who were employed, conditional earnings were less highly related to these factors and more highly related to educational attainment.

Health-related behaviors and multiple chronic health conditions among persons with traumatic spinal cord injury.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: The purposes of this study were to assess (i) prevalence of self-reported multiple chronic conditions (MCC) in a population-based cohort of persons with traumatic spinal cord injury (TSCI) and (ii) the association between health-related behaviors and MCC. SETTING: Population-based TSCI cohort. METHODS: Participants included 716 adults with TSCI of at least 1-year duration who were identified through a population-based TSCI surveillance system. Standard questions from the Behavioral Risk Factor Surveillance System measured cigarette smoking, binge drinking, planned exercises, and 10 chronic health conditions (CHC), including diabetes, heart attack, angina (or coronary artery disease), stroke, cancer, asthma, kidney disease, arthritis, depressive disorder, chronic obstructive pulmonary disease. MCC was defined as having two or more CHCs in this study. Multivariate logistic regression models were used to assess the association between health-related behaviors and MCC. RESULTS: Almost half (45%) of the study sample had MCC. After controlling for demographic and injury characteristics, participants with smoking history of at least 100 cigarettes were 59% more likely to develop MCC, and those who had planned exercises at least three times a week were 36% less likely to have MCC. CONCLUSIONS: We found MCC prevalence was high among people with TSCI, and MCC was associated with cigarette smoking and planned exercise.