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1.
Arch Phys Med Rehabil ; 104(11): 1872-1881, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37172674

RESUMO

OBJECTIVE: To report on the development and calibration of the new Blood Pressure Dysregulation Measurement System (BPD-MS) item banks that assess the effect of BPD on health-related quality of life (HRQOL) and the daily activities of Veterans and non-Veterans with spinal cord injury (SCI). DESIGN: Cross-sectional survey study. SETTING: Two Veteran Affairs medical centers and a SCI model system site. PARTICIPANTS: 454 respondents with SCI (n=262 American Veterans and n=192 non-Veterans; N=454). INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: The BPD-MS item banks. RESULTS: BPD item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing of persons with SCI and professional caregivers. The item banks then underwent expert review, reading level assessment, and translatability review prior to field testing. The items pools consisted of 180 unique questions (items). Exploratory and confirmatory factor analyses, item response theory modeling, and differential item function investigations resulted in item banks that included a total of 150 items: 75 describing the effect of autonomic dysreflexia on HRQOL, 55 describing the effect of low blood pressure (LBP) on HRQOL, and 20 describing the effect of LBP on daily activities. In addition, 10-item short forms were constructed based on item response theory-derived item information values and the clinical relevance of item content. CONCLUSIONS: The new BPD-MS item banks and corresponding 10-item short forms were developed using established rigorous measurement development standards, which represents the first BPD-specific patient-reported outcomes measurement system unique for use in the SCI population.


Assuntos
Traumatismos da Medula Espinal , Veteranos , Humanos , Pressão Sanguínea , Qualidade de Vida , Estudos Transversais , Inquéritos e Questionários , Psicometria
2.
Arch Phys Med Rehabil ; 103(2): 215-223, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34678295

RESUMO

OBJECTIVE: To explore trajectories of functional recovery that occur during the first 2 years after spinal cord injury (SCI). DESIGN: Observational cohort study. SETTING: Eight SCI Model System sites. PARTICIPANTS: A total of 479 adults with SCI completed 4 Spinal Cord Injury-Functional Index (SCI-FI) item banks within 4 months of injury and again at 2 weeks, 3, 6, 12, and 24 months after baseline assessment (N=479). INTERVENTION: None. MAIN OUTCOME MEASURES: SCI-FI Basic Mobility/Capacity (C), Fine Motor Function/C, Self-care/C, and Wheelchair Mobility/Assistive Technology (AT) item banks. RESULTS: Growth mixture modeling was used to identify groups with similar trajectory patterns. For the Basic Mobility/C and Wheelchair Mobility/AT domains, models specifying 2 trajectory groups were selected. For both domains, a majority class exhibited average functional levels and gradual improvement, primarily in the first 6 months. A smaller group of individuals made gradual improvements but had greater initial functional limitations. The Self Care/C domain exhibited a similar pattern; however, a third, small class emerged that exhibited substantial improvement in the first 6 months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed 2 patterns, with individuals reporting generally low initial scores and then making either modest or large improvements. In individual growth curve models, injury/demographic factors predicted initial functional levels but less so regarding rates of recovery. CONCLUSIONS: Trajectories of functional recovery followed a small number of change patterns, although variation around these patterns emerged. During the first 2 years after initial hospitalization, SCI-FI scores showed modest improvements; however, substantial improvements were noted for a small number of individuals with severe limitations in fine motor and self-care function. Future studies should further explore the personal, medical, and environmental characteristics that influence functional trajectories during these first 2 years and beyond.


Assuntos
Avaliação da Deficiência , Traumatismos da Medula Espinal , Atividades Cotidianas , Adulto , Humanos , Quadriplegia , Recuperação de Função Fisiológica
3.
Arch Phys Med Rehabil ; 103(2): 199-206, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34717921

RESUMO

OBJECTIVE: To establish responsiveness of 3 Spinal Cord Injury-Functional Index/Capacity (SCI-FI/C) item banks in the first year after spinal cord injury (SCI). DESIGN: Longitudinal patient-reported outcomes assessment replicated through secondary analysis of an independent data set. SETTING: A total of 8 SCI Model Systems rehabilitation hospitals in the United States. PARTICIPANTS: Study 1 participants included 184 adults with recent (≤4 months) traumatic SCI and 221 community-dwelling adults (>1 year post injury) (N=405). Study 2 participants were 418 individuals with recent SCI (≤4 months) (N=418). INTERVENTIONS: In study 1, SCI-FI/C computer adaptive tests were presented in a standardized interview format either in person or by phone call at baseline and 6-month follow-up. Responsiveness was examined by comparing 6-month changes in SCI-FI scores within and across samples (recently injured vs community-dwelling) because only the recent injury sample was expected to exhibit change over time. Effect sizes were also computed. In study 2, the study 1 results were cross-validated in a second sample with recent SCI 1 year after baseline measurement. Study 2 also compared the SCI-FI/C measures' responsiveness to that of the Self-reported Functional Measure (SRFM) and stratified results by injury diagnosis and completeness. MAIN OUTCOME MEASURES: The SCI-FI Basic Mobility/C, Self-care/C and Fine Motor/C item banks (study 1 and study 2); Self-reported Functional Measure SRFM (study 2 only). RESULTS: In study 1, changes in SCI-FI/C scores between baseline and 6-month follow-up were statistically significant (P<.01) for recently injured individuals. SCI-FI Basic Mobility/C, Self-care/C, and Fine Motor/C item banks demonstrated small to medium effect sizes in the recently injured sample. In the community-dwelling sample, all SCI-FI/C effects were negligible (ie, effect size<0.08). Study 2 results were similar to study 1. As expected, SCI-FI Basic Mobility/C and Self-care/C were responsive to change for all individuals in study 2, whereas the SCI-FI Fine Motor/C was responsive only for individuals with tetraplegia and incomplete paraplegia. The SRFM demonstrated a medium effect size for responsiveness (effect size=0.65). CONCLUSIONS: The SCI-FI Basic Mobility/C and Self-care/C banks demonstrate adequate sensitivity to change at 6 months and 1 year for all individuals with SCI, while the SCI-FI/C Fine Motor item bank is sensitive to change in individuals with tetraplegia or incomplete paraplegia. All SCI-FI/C banks demonstrate stability in a sample not expected to change. Results provide support for the use of these measures for research or clinical use.


Assuntos
Avaliação da Deficiência , Traumatismos da Medula Espinal , Atividades Cotidianas , Adulto , Humanos , Paraplegia/reabilitação , Quadriplegia/reabilitação , Traumatismos da Medula Espinal/reabilitação , Estados Unidos
4.
Arch Phys Med Rehabil ; 100(12): 2233-2243, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31421092

RESUMO

OBJECTIVES: In a sample of wheelchair users with spinal cord injury (SCI), the objectives were to investigate which participant characteristics are associated with greater perceived discrimination in the health care setting, and how such discrimination relates to health outcomes of pain and depressive symptoms. DESIGN: Survey, cross-sectional. SETTING: Spinal Cord Injury Model Systems (SCIMS) Center. PARTICIPANTS: Full-time wheelchair users with SCI from 9 SCIMS centers (N=410), with data collected between 2011 and 2016. INTERVENTIONS: N/A. MAIN OUTCOMES: A 7-item questionnaire inquiring about perceived discrimination by hospital staff, self-reported pain severity over the past month using a 0-10 Numeric Rating Scale, and depressive symptoms using the 2-question Patient Health Questionnaire screener. RESULTS: Participants who were black or from the lowest income group were more likely to report experiencing more discrimination than those who were white or from the highest income group, respectively (incidence rate ratio=2.2-2.6, P<.01). Those who reported more perceived discrimination had greater risk of severe pain compared to no pain (relative risk [RR]=1.11; 95% confidence interval [95% CI], 1.01-1.23; P<.05), mild depressive symptoms (RR=1.09; 95% CI, 1.02-1.17; P<.05), and severe depressive symptoms (RR=1.12; 95% CI, 1.04-1.21; P<.05) compared to no symptoms. CONCLUSIONS: Wheelchair users with SCI who were from more disadvantaged groups (black, lower income levels) reported experiencing more discrimination in their health care setting. Furthermore, those who reported more discrimination were more likely to report worse mental and physical health outcomes. Attempts to reduce discrimination in health care settings may lead to better outcomes for people with SCI. These observations were correlational and not causal; a prospective analysis is necessary to prove causation. Future investigations should further explore the effect of discrimination on the many facets of living with an SCI.


Assuntos
Depressão/etiologia , Dor/etiologia , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/reabilitação , Cadeiras de Rodas , Adulto , Fatores Etários , Atitude do Pessoal de Saúde , Estudos Transversais , Feminino , Disparidades em Assistência à Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Preconceito/psicologia , Estudos Prospectivos , Fatores Sexuais , Fatores Socioeconômicos
5.
Arch Phys Med Rehabil ; 99(9): 1783-1788, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29608900

RESUMO

OBJECTIVE: To examine the ability of the Spinal Cord Injury-Functional Index/Assistive Technology (SCI-FI/AT) measure to detect change in persons with spinal cord injury (SCI). DESIGN: Multisite longitudinal (12-mo follow-up) study. SETTING: Nine SCI Model Systems programs. PARTICIPANTS: Adults (N=165) with SCI enrolled in the SCI Model Systems database. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: SCI-FI/AT computerized adaptive test (CAT) (Basic Mobility, Self-Care, Fine Motor Function, Wheelchair Mobility, and/or Ambulation domains) completed at discharge from rehabilitation and 12 months after SCI. For each domain, effect size estimates and 95% confidence intervals were calculated for subgroups with paraplegia and tetraplegia. RESULTS: The demographic characteristics of the sample were as follows: 46% (n=76) individuals with paraplegia, 76% (n=125) male participants, 57% (n=94) used a manual wheelchair, 38% (n=63) used a power wheelchair, 30% (n=50) were ambulatory. For individuals with paraplegia, the Basic Mobility, Self-Care, and Ambulation domains of the SCI-FI/AT detected a significantly large amount of change; in contrast, the Fine Motor Function and Wheelchair Mobility domains detected only a small amount of change. For those with tetraplegia, the Basic Mobility, Fine Motor Function, and Self-Care domains detected a small amount of change whereas the Ambulation item domain detected a medium amount of change. The Wheelchair Mobility domain for people with tetraplegia was the only SCI-FI/AT domain that did not detect significant change. CONCLUSIONS: SCI-FI/AT CAT item banks detected an increase in function from discharge to 12 months after SCI. The effect size estimates for the SCI-FI/AT CAT vary by domain and level of lesion. Findings support the use of the SCI-FI/AT CAT in the population with SCI and highlight the importance of multidimensional functional measures.


Assuntos
Avaliação da Deficiência , Alta do Paciente/estatística & dados numéricos , Autocuidado/estatística & dados numéricos , Traumatismos da Medula Espinal/reabilitação , Cadeiras de Rodas/estatística & dados numéricos , Atividades Cotidianas , Adulto , Bases de Dados Factuais , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Paraplegia/etiologia , Paraplegia/reabilitação , Psicometria , Quadriplegia/etiologia , Quadriplegia/reabilitação , Tecnologia Assistiva/estatística & dados numéricos , Sensibilidade e Especificidade , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/psicologia , Resultado do Tratamento , Caminhada
6.
Arch Phys Med Rehabil ; 97(10): 1745-1752.e7, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27133356

RESUMO

OBJECTIVES: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index/Assistive Technology (SCI-FI/AT) short forms (SFs) in the domains of basic mobility, self-care, fine motor function, and ambulation based on internal consistency; correlations between SFs and full item banks, and a 10-item computerized adaptive test (CAT) version; magnitude of ceiling and floor effects; and measurement precision across a broad range of function in a sample of adults with spinal cord injury (SCI). DESIGN: Cross-sectional cohort study. SETTING: Nine national Spinal Cord Injury Model Systems programs. PARTICIPANTS: A sample of adults with traumatic SCI (N=460) stratified by level of injury (paraplegia/tetraplegia), completeness of injury, and time since SCI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: SCI-FI/AT full item bank, 10-item CAT, and SFs (with separate Self-Care and Fine Motor Function SFs for persons with tetraplegia and paraplegia). RESULTS: The SCI-FI/AT SFs demonstrated very good internal consistency, group-level reliability, and excellent correlations between SFs and scores based on the CAT version and the total item bank. Ceiling and floor effects are acceptable (except for unacceptable ceiling effects for persons with paraplegia on the Self-Care and Fine Motor Function SFs). The test information functions are excellent across a broad range of functioning typical of persons with paraplegia and tetraplegia. CONCLUSIONS: Clinicians and researchers should consider using the SCI-FI/AT SFs to assess functioning with the use of assistive technology when CAT applications are not available.


Assuntos
Avaliação da Deficiência , Modalidades de Fisioterapia , Tecnologia Assistiva , Traumatismos da Medula Espinal/reabilitação , Inquéritos e Questionários/normas , Atividades Cotidianas , Adulto , Estudos Transversais , Feminino , Hemiplegia/reabilitação , Humanos , Masculino , Pessoa de Meia-Idade , Paraplegia/reabilitação , Psicometria , Reprodutibilidade dos Testes , Autocuidado , Fatores Socioeconômicos , Traumatismos da Medula Espinal/classificação , Traumatismos da Medula Espinal/psicologia , Índices de Gravidade do Trauma , Caminhada
7.
Int J Geriatr Psychiatry ; 30(9): 911-8, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-25475426

RESUMO

OBJECTIVE: The objective of this study is to determine whether differential item functioning (DIF) due to cognitive status impacted three depressive symptoms measures commonly used with older adults. METHODS: Differential item functioning in depressive symptoms was assessed among participants (N = 3558) taking part in four longitudinal studies of cognitive aging, using the Geriatric Depression Scale, the Montgomery-Åsberg Depression Rating Scale, and the Center for Epidemiologic Studies Depression Scale. Participants were grouped by cognitive status using a general cognitive performance score derived from each study's neuropsychological battery and linked to a national average using a population-based survey representative of the US population. The Clinical Dementia Rating score was used as an alternate grouping variable in three of the studies. RESULTS: Although statistically significant DIF based on cognitive status was found for some depressive symptom items (e.g., items related to memory complaints, appetite loss, lack of energy, and mood), the effect of item bias on the total score for each scale was negligible. CONCLUSIONS: The depressive symptoms scales in these four studies measured depression in the same way, regardless of cognitive status. This may reduce concerns about using these depression measures in cognitive aging research, as relationships between depression and cognitive decline are unlikely to have been due to item bias, at least in the ways that were measured in the datasets we considered.


Assuntos
Transtornos Cognitivos/psicologia , Cognição/fisiologia , Transtorno Depressivo/diagnóstico , Escalas de Graduação Psiquiátrica , Idoso , Idoso de 80 Anos ou mais , Transtorno Depressivo/fisiopatologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade
8.
Arch Phys Med Rehabil ; 95(11): 2158-66, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-25094001

RESUMO

OBJECTIVE: To examine the longitudinal effects of race/ethnicity on hospitalization among adults with spinal cord injury (SCI) in the 10-year period after initial injury. DESIGN: Retrospective analysis of postinjury hospitalizations among non-Hispanic white, non-Hispanic African American, and Hispanic adults with SCI. SETTING: Community. Data were extracted from the 2011 National Spinal Cord Injury Model Systems database. PARTICIPANTS: Patients with traumatic SCI (N= 5146; white, 3175; African American, 1396; Hispanic, 575) who received rehabilitation at one of the relevant SCI Model Systems. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Hospitalization, including rate of hospitalization, number of hospitalizations, and number of days hospitalized during the 12 months before the first-, fifth-, and tenth-year follow-up interviews for the SCI Model Systems. RESULTS: Significant differences were found in rates of hospitalization at 1 and 5 years postinjury, with participants from Hispanic backgrounds reporting lower rates than either whites or African Americans. At 10 years postinjury, no differences were noted in the rate of hospitalization between racial/ethnic groups; however, compared with whites (P=.011) and Hispanics (P=.051), African Americans with SCI had 13 and 16 more days of hospitalization, respectively. Compared with the first year postinjury, the rate of hospitalization declined over time among whites, African Americans, and Hispanics; however, for African Americans, the number of days hospitalized increased by 12 days (P=.036) at 10 years versus 5 years postinjury. CONCLUSIONS: Racial/ethnic variation appears to exist in postinjury hospitalization for individuals with SCI, with Hispanics showing the lowest rates of hospitalization at 1 and 5 years postinjury and African Americans having a significantly higher number of days hospitalized at 10 years postinjury. Potential explanations for these variations are discussed, and recommendations are made for potential changes to policy and clinical care.


Assuntos
Negro ou Afro-Americano/estatística & dados numéricos , Hispânico ou Latino/estatística & dados numéricos , Tempo de Internação/tendências , Readmissão do Paciente/tendências , Traumatismos da Medula Espinal/etnologia , População Branca/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Traumatismos da Medula Espinal/terapia , Fatores de Tempo , Índices de Gravidade do Trauma , Estados Unidos , Adulto Jovem
9.
Arch Phys Med Rehabil ; 95(11): 2140-51, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-25093999

RESUMO

OBJECTIVE: To examine racial and ethnic differences in self-care and mobility outcomes for persons with a motor complete, traumatic spinal cord injury (SCI) at discharge and 1-year follow-up. DESIGN: Retrospective cohort study. SETTING: Sixteen rehabilitation centers contributing to the Spinal Cord Injury Model Systems (SCIMS) database. PARTICIPANTS: Adults with traumatic, motor complete SCI (N=1766; American Spinal Injury Association Impairment Scale grade A or B) enrolled in the SCIMS between 2000 and 2011. Selected cases had complete self-reported data on race and ethnicity (non-Hispanic white, non-Hispanic black, or Hispanic) and motor FIM scores assessed at inpatient rehabilitation admission, discharge, and 1-year follow-up. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Functional outcomes were measured by FIM self-care and mobility scores on a 1 to 7 FIM scale, at discharge and 1-year follow-up. RESULTS: Multiple regression models stratified by neurologic category and adjusted for sociodemographic and injury characteristics assessed racial and ethnic group differences in FIM self-care and mobility change scores at discharge and 1-year follow-up. At discharge, non-Hispanic black participants with tetraplegia and paraplegia had significantly poorer gains in FIM self-care and mobility scores relative to non-Hispanic white and Hispanic participants. At 1-year follow-up, similar FIM self-care and mobility change scores were found across racial and ethnic groups within each neurologic category. CONCLUSIONS: Non-Hispanic white and Hispanic participants had comparatively more improvement in self-care and mobility during inpatient rehabilitation compared with non-Hispanic black participants. At 1-year follow-up, no differences in self-care and mobility outcomes were observed across racial and ethnic groups. Additional research is needed to identify potential modifiable factors that may contribute to racially and ethnically different patterns of functional outcomes observed during inpatient rehabilitation.


Assuntos
Vértebras Cervicais , Disparidades nos Níveis de Saúde , Limitação da Mobilidade , Autocuidado , Traumatismos da Medula Espinal/etnologia , Traumatismos da Medula Espinal/fisiopatologia , Vértebras Torácicas , Adolescente , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Feminino , Seguimentos , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Paraplegia/etiologia , Paraplegia/fisiopatologia , Paraplegia/reabilitação , Alta do Paciente , Quadriplegia/etiologia , Quadriplegia/fisiopatologia , Quadriplegia/reabilitação , Estudos Retrospectivos , Traumatismos da Medula Espinal/reabilitação , Índices de Gravidade do Trauma , Estados Unidos , População Branca/estatística & dados numéricos , Adulto Jovem
10.
Prog Community Health Partnersh ; 17(1): 13-24, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37462571

RESUMO

BACKGROUND: Spinal cord injury is a condition that adversely impacts employment and economic stability. The Kessler Foundation National Employment and Disability Survey (KFNEDS) was developed to understand the experience of striving to work among persons with disabilities. However, this survey was not intended to capture the employment experiences of veterans living with spinal cord injury. The aim of this study was to engage veterans living with a spinal cord injury to adapt the KFNEDS for veterans living with this specific disability. OBJECTIVES: Describe the process and outcomes of actively engaging veterans living with spinal cord injury in the revision of the KFNEDS. METHODS: In this multiphase qualitative study, we used an iterative veteran-centered approach to engage veterans living with an SCI in all project phases. We consulted with a Veterans' hospital's Veteran Engagement Group and convened a study-specific Community Action Board to engage in a collaborative partnership with the research team. We recruited 17 veterans living with a spinal cord injury, employed or looking for employment since their spinal cord injury, to participate in focus groups and cognitive interviews that informed the adaptation of the KFNEDS-VS. RESULTS: A provisional version of the KFNEDS-VS included 37 survey questions in the following sections: Disability Screen, Employment Screen, Disability, Employment Overall, Looking for Work, At Work, and Workplace Accommodations and Supports. Revisions included wording changes for clarity, veteran and spinal cord injury-specific content that was missing from the questions or response options, and removal of irrelevant questions. CONCLUSIONS: Engaging veterans in multiple phases of the study lead to the development of a relevant survey that captures the lived experience of veterans seeking, obtaining, and maintaining employment following spinal cord injury.


Assuntos
Pessoas com Deficiência , Readaptação ao Emprego , Traumatismos da Medula Espinal , Veteranos , Humanos , Veteranos/psicologia , Pesquisa Participativa Baseada na Comunidade , Pessoas com Deficiência/psicologia
11.
J Int Neuropsychol Soc ; 17(4): 625-38, 2011 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23131601

RESUMO

Older African Americans tend to perform poorly in comparison with older Whites on episodic memory tests. Observed group differences may reflect some combination of biological differences, measurement bias, and other confounding factors that differ across groups. Cognitive reserve refers to the hypothesis that factors, such as years of education, cognitive activity, and socioeconomic status, promote brain resilience in the face of pathological threats to brain integrity in late life. Educational quality, measured by reading test performance, has been postulated as an important aspect of cognitive reserve. Previous studies have not concurrently evaluated test bias and other explanations for observed differences between older African Americans and Whites. We combined data from two studies to address this question. We analyzed data from 273 African American and 720 White older adults. We assessed DIF using an item response theory/ordinal logistic regression approach. DIF and factors associated with cognitive reserve did not explain the relationship between race, and age- and sex-adjusted episodic memory test performance. However, reading level did explain this relationship. The results reinforce the importance of considering education quality, as measured by reading level, when assessing cognition among diverse older adults.


Assuntos
Reserva Cognitiva/fisiologia , Memória Episódica , Desempenho Psicomotor/fisiologia , Negro ou Afro-Americano , Idoso , Idoso de 80 Anos ou mais , Viés , Interpretação Estatística de Dados , Demografia , Escolaridade , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Leitura , Análise de Regressão , População Branca
12.
Arch Phys Med Rehabil ; 92(3): 441-8, 2011 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-21353826

RESUMO

OBJECTIVE: To examine the association of race and cultural factors with quality-of-life factors (participation, life satisfaction, perceived health status) in people with spinal cord injury (SCI). DESIGN: Cross-sectional multisite study using structured questionnaires. SETTING: Six National SCI Model Systems centers. PARTICIPANTS: People with SCI (N=275; age ≥16y; SCI with discernable neurologic impairments; used power or manual wheelchair for >1y as primary means of mobility; nonambulatory except for exercise purposes). INTERVENTIONS: None. MAIN OUTCOME MEASURES: Participation (Craig Handicap Assessment and Reporting Technique Short Form); satisfaction (Satisfaction With Life Scale); and perceived health status (2 items from 36-Item Short Form Health Survey). RESULTS: African American (n=96) with SCI reported more experiences of discrimination in health care, greater perceived racism, more health care system distrust, and lower health literacy than whites (n=156; P range, <.001-<.05). Participants who reported experiencing more discrimination in health care reported better occupational functioning (odds ratio [OR], 1.5; 95% confidence interval [CI], 1.07-2.09; P<.05). Those who perceived more racism in health care settings reported better occupational functioning (OR, 1.65; 95% CI, 1.12-2.43; P<.05) and greater perceived health (ß=.36; 95% CI, .05-.68; P<.05). Those who reported more distrust in the health care system reported better current health compared with 1 year ago (ß=.38; 95% CI, .06-.69; P<.05). Those who reported better communication with their health care provider reported higher levels of mobility (OR, 1.5; 95% CI, 1.05-2.13; P<.05) and better general health (ß=.27; 95% CI, .01-.53; P<.05). CONCLUSIONS: In this cross-sectional study of people with SCI, higher levels of perceived discrimination and racism and better communication with health care providers were associated with an increase in participation and functioning and improvements in perceptions of well-being. These associations are different from those reported in other study populations and warrant confirmation in future prospective studies.


Assuntos
Cultura , Qualidade de Vida/psicologia , Grupos Raciais/psicologia , Traumatismos da Medula Espinal/psicologia , Estudos Transversais , Feminino , Disparidades nos Níveis de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Preconceito , Relações Profissional-Paciente , Fatores Socioeconômicos
13.
JMIR Res Protoc ; 8(10): e14039, 2019 Oct 04.
Artigo em Inglês | MEDLINE | ID: mdl-31588906

RESUMO

BACKGROUND: An estimated 42,000 people currently living with chronic spinal cord injury (SCI) are veterans. SCI was a common combat-related injury in the World Wars and Vietnam era and now affects more than 11% of military personnel injured in Operation Iraqi Freedom and Operation Enduring Freedom. The Veterans Benefits Administration primarily offers financial compensation for disabilities sustained or re-aggravated during military service, called service-connected disability compensation. With the overwhelming cost of living with an SCI, this monthly financial compensation can provide service-connected veterans and their families with access to additional supportive resources (eg, assistive devices and personal aide) and maintain their quality of life (QOL). Little is known about personal, health, functional, and QOL outcomes associated with service-connected and nonservice-connected status for veterans living with an SCI. OBJECTIVE: The aim of this study is to compare the ways in which Veterans Affairs' (VA) service-connected and nonservice-connected status may be associated with health and functional outcomes, choice of health care provider, and overall QOL for veterans living with an SCI and their caregivers. METHODS: This cross-sectional qualitative study will gather data using retrospective chart reviews, semistructured interviews, and focus groups. After obtaining institutional review board (IRB) approval, purposeful sampling techniques will be used to recruit and enroll the following key stakeholders: veterans living with an SCI, family caregivers, and SCI health care providers. Concurrent data collection will take place at 2 sites: Veterans Administration New Jersey Healthcare System and Northern New Jersey Spinal Cord Injury System. RESULTS: This study was funded in July 2015. IRB approval was obtained by November 2016 at both sites. Enrollment and data collection for phase 1 to phase 4 are complete. A total of 69 veterans, 18 caregivers, and 19 SCI clinicians enrolled in the study. Data analyses for these phases are underway. In phase 5, the follow-up focus group activities are scheduled. The final results are expected by the end of 2019. CONCLUSIONS: The factors that contribute to veterans living with SCI seeking and not seeking VA disability compensation benefits are not well understood in rehabilitation research. Triangulation of these data sources will allow us to compare, contrast, and integrate the results, which can be used to develop clinical guidelines, caregiver training, and patient education programs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14039.

14.
J Natl Med Assoc ; 100(10): 1161-7, 2008 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-18942277

RESUMO

OBJECTIVES: This qualitative study examined underserved black males' perspectives about prostate and colorectal cancer screening. METHODS: Black male residents of Newark, NJ, > or =18 years of age, were recruited to participate in focus groups. Two groups were conducted with a total of 24 participants. Transcripts were analyzed using an immersion/crystallization approach. RESULTS: Three major themes were identified, while men reflected on their experiences with prostate and colorectal cancer screening: (1) motivation for seeking screening; (2) fear associated with screenings: and (3) healthcare system barriers (e.g., patient-doctor relationships, insurance and mistrust of healthcare professionals). Participants also gave recommendations on how to increase preventive screening. DISCUSSION: Fear and past experiences with healthcare serve as motivators and demotivators of preventive screening behavior. Interventions that address motivation and fear are recommended to increase preventive screening among this population.


Assuntos
Negro ou Afro-Americano/psicologia , Neoplasias Colorretais/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Área Carente de Assistência Médica , Neoplasias da Próstata/prevenção & controle , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Estados Unidos
15.
J Gerontol Nurs ; 34(8): 17-22, 2008 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-18714602

RESUMO

The purpose of this pilot study was to explore the approaches to depression care preferred by older home-care patients and examine characteristics associated with those preferences. Twenty-eight long-term home-care patients, ages 62 to 95, were interviewed. Patients ranked their depression care preferences and provided rationale for their responses. Results indicated prayer was preferred by the highest percentage of patients (50%). Comparing patients with and without depression experience, prayer was preferred by the latter group. The results highlight the importance of addressing patient preferences during care planning to improve participation in geriatric depression care management.


Assuntos
Transtorno Depressivo/terapia , Cura pela Fé , Serviços de Assistência Domiciliar , Satisfação do Paciente , Religião , Idoso , Idoso de 80 Anos ou mais , Transtorno Depressivo/enfermagem , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New York , Projetos Piloto
17.
Top Stroke Rehabil ; 24(1): 24-33, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27216085

RESUMO

BACKGROUND: Spatial neglect prolongs stroke survivors' recovery to independence. However, little is known about the impact of spatial neglect on caregivers of stroke survivors. OBJECTIVE: To explore the factors associated with burden and stress among informal caregivers of stroke survivors with spatial neglect. METHODS: Following the previous study of 108 stroke survivors, we reached 24 stroke survivors' caregivers, and 20 caregivers (age: M±SD=56.9±12.7 years; 12 females) completed the study. 10 survivors had symptoms of spatial neglect, and 10 did not (i.e., SN+ or SN-, respectively) at the time when discharged from inpatient rehabilitation, which was 9.3±6.2 months before the present study. Via a semi-structured telephone interview, we assessed caregivers' burden and stress qualitatively and quantitatively. RESULTS: No difference was observed across caregiver groups in cognitive function, depressive mood, or community mobility. In comparison, caregivers of the SN+ group allocated more time to care, controlling for survivors' disability (adjusted effective size d = 1.80). Their self-perceived burden and stress were more severe than the other group (adjusted d = .99). Qualitative analysis indicated caregivers of the SN+ group were more likely to describe economic stressors and undesirable changes in career and vacation planning. While 80% of participants preferred their care recipients to receive additional motor or mobility therapy, caregivers of the SN+ group were more likely to suggest additional therapy for cognitive impairment. CONCLUSIONS: This exploratory study suggests that spatial neglect may heighten caregivers' burden and stress levels. Future studies with a large sample size are required.


Assuntos
Cuidadores/psicologia , Transtornos da Percepção/complicações , Estresse Psicológico/etiologia , Acidente Vascular Cerebral/complicações , Sobreviventes/psicologia , Idoso , Economia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Escalas de Graduação Psiquiátrica , Autoimagem , Índice de Gravidade de Doença , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Reabilitação do Acidente Vascular Cerebral , Inquéritos e Questionários
18.
Top Spinal Cord Inj Rehabil ; 17(2): 1-9, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-23966760

RESUMO

There is considerable variation in rehabilitation outcomes within the population of spinal cord-injured individuals across racial and socioeconomic groups. This suggests that the long-term health following spinal cord injury (SCI) is determined, at least in part, by group differences in exposure to advantages and disadvantages among persons living in the community. This article conceptualizes the nature of vulnerability and how increased vulnerability leads to disparities in SCI outcomes. Demographic, socioeconomic, and geographic determinants of adverse outcomes among vulnerable groups are discussed. Finally, a research model that outlines potential processes that elicit vulnerability following SCI and clinical implications is reviewed.

19.
Obesity (Silver Spring) ; 18(6): 1153-9, 2010 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-20019676

RESUMO

Extremely obese women are less likely than nonobese women to receive breast and cervical cancer screening examinations. Reasons for this disparity are unclear and may stem from patient and/or physician barriers. This sequential mixed-methods study used individual in-depth interviews of 15 family physicians followed by a mail survey of 255 family physicians (53% response rate) to understand the barriers they faced in performing cancer screening examinations in extremely obese women. Barriers fell into three main areas: (i) difficulty doing pelvic and breast exams; (ii) inadequate equipment; and (iii) challenges overcoming patient barriers and refusal. This led some physicians to avoid performing breast and pelvic examinations on extremely obese women. Having more knowledge about specific examination techniques was associated with less difficulty in palpating lumps on breast and pelvic examinations (P < 0.005). Physicians perceived that embarrassment, aversion to undressing, and avoidance of discussions related to their weight were the most frequent barriers extremely obese women had with getting physical examinations. Educating and/or motivating patients and addressing fears were strategies used most frequently when patients refused mammograms or Pap smears. Interventions focusing on physician barriers, such as educating them on specific examination techniques, obtaining adequate equipment and supplies, and providing resources to assist physicians in dealing with patient barriers and refusal, may be fruitful in increasing cancer screening rates in extremely obese patients. Future research studies testing the effectiveness of these strategies are needed to improve cancer outcomes in this high-risk population.


Assuntos
Detecção Precoce de Câncer/estatística & dados numéricos , Obesidade Mórbida/terapia , Papel do Médico , Relações Médico-Paciente , Médicos de Família , Atitude Frente a Saúde , Barreiras de Comunicação , Detecção Precoce de Câncer/instrumentação , Detecção Precoce de Câncer/métodos , Detecção Precoce de Câncer/psicologia , Educação Médica Continuada , Feminino , Humanos , Entrevistas como Assunto , Masculino , Mamografia/psicologia , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/diagnóstico , Neoplasias/psicologia , Obesidade Mórbida/complicações , Obesidade Mórbida/psicologia , Teste de Papanicolaou , Médicos de Família/psicologia , Médicos de Família/estatística & dados numéricos , Prática Profissional/estatística & dados numéricos , Esfregaço Vaginal/psicologia
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