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1.
Thorax ; 77(2): 123-128, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-33927021

RESUMO

BACKGROUND: Inability to return to work (RTW) is common after acute respiratory distress syndrome (ARDS). Mismatch in an individual's job workload and his or her functional ability, termed work ability imbalance, is negatively associated with RTW, but has not been evaluated in ARDS survivors. OBJECT: We examine associations between work ability imbalance at 6 months and RTW at 6 months and 12 months, as well as the ability to sustain employment in ARDS survivors. METHODS: Previously employed participants from the ARDS Network Long-Term Outcomes Study (N=341) were evaluated. Pre-ARDS workload was determined based on the US Occupational Information Network classification. Post-ARDS functional ability was assessed using self-reported 36-Item Short Form Health Survey (SF-36) physical functioning, social functioning and mental health subscales, and Mini-Mental State Examination. ARDS survivors were categorised into four work ability imbalance categories: none, psychosocial, physical, and both psychosocial and physical. RESULTS: Almost 90% of ARDS survivors had a physical and/or psychosocial work ability imbalance at both 6-month and 12-month follow-up. Compared with survivors with no imbalance at 6 months, those with both physical and psychosocial imbalance had lower odds of RTW (6 months: OR=0.33, 95% CI=0.13 to 0.82; 12 months: OR=0.22, 95% CI=0.07 to 0.65). Thirty-eight (19%) of those who ever RTW were subsequently jobless at 12 months. CONCLUSION: Interventions aimed at rebalancing ARDS survivors' work ability by addressing physical and psychosocial aspects of their functional ability and workload should be explored as part of efforts to improve RTW, maintain employment and reduce the financial impact of joblessness.


Assuntos
Síndrome do Desconforto Respiratório , Retorno ao Trabalho , Atividades Cotidianas , Feminino , Humanos , Masculino , Sobreviventes , Carga de Trabalho
2.
Work ; 69(3): 1075-1081, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34219700

RESUMO

BACKGROUND: Burnout is widely regarded as a syndrome resulting from chronic occupational stress. While physician burnout has been the subject of extensive research, physician wellness has been proposed as an alternative framework for understanding physician distress. OBJECTIVE: The purpose of this qualitative study was to understand the organizational context of faculty wellness within an academic health care system. METHODS: Semi-structured interviews were conducted with 24 chairs of clinical and non-clinical departments in a US university school of medicine. RESULTS: Chairs described several system-level factors perceived to interfere with faculty wellness such as a stricter regulatory environment, the loss of professional autonomy, the up or out promotion system, limitless hours, and the rise of shadow work. While all chairs articulated some degree of responsibility for the wellness of their faculty, some said they lacked the skills or knowledge of resources to fully engage in this role. CONCLUSIONS: Findings from this study are consistent with recent research on physician burnout, which has pivoted from describing burnout as an individual responsibility to including the professional, organizational, and societal factors which likely contribute to physician job satisfaction and well-being. As health care organizations, including academic medical centers, move toward systems-based solutions for physician occupational health, it will be incumbent upon organizational leaders to make administrative decisions favoring physician wellness.


Assuntos
Esgotamento Profissional , Local de Trabalho , Docentes , Humanos , Satisfação no Emprego , Inquéritos e Questionários
3.
Disabil Health J ; 14(1): 100967, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32768336

RESUMO

BACKGROUND: The Americans with Disabilities Act (ADA) requires that health care entities provide full and equal access to people with disabilities. However, results of previous studies have indicated that the ADA has been largely ineffective at creating systemic change in the delivery of health care. OBJECTIVE: The objective of this study was to examine the current barriers to health care access experienced by people with disabilities under Titles II and III of the ADA. METHODS: This study utilized a mixed methods multiphase design. In phase one, a survey and focus groups were conducted with individuals with disabilities who experienced barriers to health care access. In phase two, key informant interviews were conducted with individuals who had a role in ensuring equal access to health care for people with disabilities. RESULTS: In the current context of health care reform, people with disabilities continue to experience multiple barriers to health care access under Titles II and III of the ADA. However, a notable result is that several provisions of the Patient Protection and Affordable Care Act (ACA) have likely bolstered existing directives implementing requirements for health care access under the ADA. CONCLUSIONS: The results of this study provide additional support for a comprehensive examination of both the national standards for accessible health care and the enforcement of laws that prohibit discrimination on the basis of disability.


Assuntos
Pessoas com Deficiência , Patient Protection and Affordable Care Act , Reforma dos Serviços de Saúde , Instalações de Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Estados Unidos
4.
Disabil Rehabil Assist Technol ; 15(1): 21-28, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-30318953

RESUMO

Purpose: The purpose of this study was to investigate hospital practices for the management of unwanted durable medical equipment (DME) and to understand how health care providers conceived of their role in preventing DME waste. In order to fully identify opportunities for DME waste prevention, we began this study at the point where health care providers prescribed patients DME.Methods: We conducted a basic interpretive qualitative study in a large regional health care system in the United States employing semi-structured interviews and a focus group. Study informants included clinicians, physicians and others involved in prescribing patients DME as well as those who played a role in environmentally sustainable health care. Informants were targeted at the patient and health care systems levels. Data were analysed using conventional qualitative content analysis.Results: Analysis of data revealed some of the hospitals were implementing sustainability practices to reduce their output of DME waste such as breaking down unwanted DME into its core components for recycling. In addition, one hospital was operating a DME reuse programme for low-income uninsured and underinsured patients. While a concern for the environment seems to have been embedded in the day-to-day operations of these hospitals, we found that health care providers were not educating patients on options for DME reuse and recycling.Conclusion: These findings may point to a disconnect between practices to prevent DME waste at a health care systems level and clinical decision-making for patient care and merits additional investigation.Implications for rehabilitationDME reuse and recycling is likely to have environmental as well as economic and social benefits.The management of DME waste should include rehabilitation providers.Rehabilitation providers should be trained in environmentally sustainable health care practices.Rehabilitation providers should educate patients on how to sustainably manage their unwanted DME.


Assuntos
Equipamentos Médicos Duráveis , Hospitais , Resíduos de Serviços de Saúde , Reciclagem , Humanos , Estados Unidos
5.
Arch Phys Med Rehabil ; 101(1S): S63-S70, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-29050789

RESUMO

OBJECTIVE: To examine trajectories of satisfaction with life (SWL) of burn survivors over time and their clinical, demographic, and other predictors. DESIGN: Longitudinal survey. SETTING: Not applicable. PARTICIPANTS: Individuals ≥18 years of age who underwent burn-related surgery and met one of the following criteria: (1) >10% total body surface area (TBSA) burn and ≥65 years of age; (2) >20% TBSA burn and 18 to 64 years of age; (3) electrical high voltage/lightning injury; or (4) burn injury to the hands, face, or feet. The participants (N=378) had data on all variables of interest and were included in the analyses. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Satisfaction With Life Scale. RESULTS: Growth mixture modeling identified 2 classes with different trajectories of SWL. The mean SWL of the unchanged class (n=224, 60%) was flat over 2 years with high initial SWL scores. The SWL of the dissatisfied class (n=154, 40%) was at the low end of average and got progressively worse over time. CONCLUSIONS: SWL after burn injury can be described by 2 different trajectories with substantially different outcomes. Older age, worse mental health, and unemployment prior to injury predicted membership in the dissatisfied class. Additional services could be provided to those at high risk for low SWL to achieve better outcomes.


Assuntos
Queimaduras/psicologia , Satisfação Pessoal , Qualidade de Vida/psicologia , Pesquisa de Reabilitação/organização & administração , Sobreviventes/psicologia , Adulto , Fatores Etários , Queimaduras/reabilitação , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/reabilitação , Feminino , Humanos , Vida Independente , Tempo de Internação , Estudos Longitudinais , Masculino , Saúde Mental , Pessoa de Meia-Idade , Fatores de Risco , Fatores Sexuais , Fatores Socioeconômicos , Índices de Gravidade do Trauma
6.
Int J MS Care ; 21(4): 143-150, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31474806

RESUMO

BACKGROUND: Project ECHO (Extension for Community Healthcare Outcomes) represents a novel approach to addressing disparities in multiple sclerosis (MS) care. A primary mechanism of the program is the use of case consultations to rapidly transfer knowledge from content experts to community providers who care for individuals with MS. METHODS: MS Project ECHO was pilot tested as a weekly 60-minute videoconference delivered to 24 clinicians across 13 practice sites over 41 weeks. Participants completed a variety of measures related to their experience in the program and answered qualitative questions via exit interview. We report on the responses to exit interview questions related to the case consultation component of MS Project ECHO. RESULTS: Participant responses regarding case consultations generated four themes: 1) improved confidence among participants in the existing treatment decision, 2) direct change in the care of the patient provided by the participant, 3) changed practice habits for all of the participant's patients with MS, and 4) increased perception that patients had confidence in the participant as an MS care provider. CONCLUSIONS: Participant responses support MS Project ECHO as a program that may directly and indirectly affect the way providers deliver MS care in underserved areas. Further research is needed to examine the resulting effect on patient outcomes.

7.
J Aging Health ; 31(10_suppl): 124S-144S, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31267811

RESUMO

Objective: Our objective was to understand the perceived impact of Washington State's upgraded training and certification requirements of long-term care workers providing personal care services from the perspectives of consumers and home care aides. Methods: We applied conventional qualitative content analysis to semi-structured interviews with 17 consumers and 10 certified home care aides. Results: We found that consumers in this study put a high premium on directing many aspects of their personal care services. We also found that while home care aides supported what consumers desired for their own care, some were unsure how to reconcile providing individualized services with the State's standardized, competency-based training and certification program. Discussion: State-based efforts, such as the one in Washington State, serve as an important starting point for building a broader effort toward the identification of competencies and associated training standards for the home care workforce.


Assuntos
Certificação , Pessoal de Saúde/organização & administração , Política de Saúde , Serviços de Assistência Domiciliar/organização & administração , Visitadores Domiciliares/organização & administração , Assistência de Longa Duração/organização & administração , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Washington
8.
Int J MS Care ; 19(6): 283-289, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29270085

RESUMO

BACKGROUND: A pilot program using the Project Extension for Community Healthcare Outcomes (ECHO) model was conducted for multiple sclerosis (MS) clinicians in the Pacific Northwest. The pilot was a collaboration between the National Multiple Sclerosis Society and faculty at the University of Washington. The goal was to determine the feasibility of using this telehealth model to increase the capacity and capability of clinicians in rural areas to treat people with MS. METHODS: Thirteen practice sites with 24 clinicians were recruited to participate. Videoconferencing was used to conduct weekly sessions consisting of brief didactics followed by case consultations. RESULTS: Most participants completing the outcome survey (10 of 15) indicated that they were more confident in treating patients with MS. They were satisfied with the training, felt better able to care for their patients, and had made changes in their treatment based on the case consultations and didactic content. They valued the case studies and case-based didactics and learned from each other as well as from the team. CONCLUSIONS: The pilot MS Project ECHO warrants further investigation regarding its potential effect on access to MS care delivery for underserved populations.

9.
J Burn Care Res ; 37(5): e415-26, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27388886

RESUMO

We conducted a systematic review of the literature to identify evidence to support the use of measures of depression for adults with burn injuries. Our goal was to be able to identify the most reliable, valid, and efficient means of identifying adults with symptoms of depression including major depressive disorder. We modified established guidelines for conducting systematic reviews by excluding measures that focused on distress or anxiety or only used depression as a predictor of interest. We also excluded studies that did not report psychometric data in their results. We identified a total of 213 articles that broadly addressed the topic of depression in burn injuries; of those, 56 that met the majority of the inclusion criteria and used depression as either the primary or the secondary outcome were reviewed. Nine studies that included report of some psychometric properties were reviewed. There have been no measures specifically developed to measure depression in those with burn injuries, and it is unclear if they are actually needed. Greater understanding of depression after burn injury can be gained by evaluating the existing general measures of depression and how they are used in the field of burn injury rehabilitation. The ultimate goal is to develop a set of recommendations for the standardization of how depressive symptomatology is assessed in this population. In this review, we highlight the deficiencies of validated measures of depression in the field of burn recovery and provide specific recommendations for both clinicians and researchers to advance our knowledge of depression following a burn injury, which will allow us to advance treatment.


Assuntos
Queimaduras/psicologia , Depressão/diagnóstico , Testes Psicológicos , Adulto , Transtorno Depressivo Maior/diagnóstico , Humanos , Psicometria
10.
J Psychosom Res ; 79(6): 550-7, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26363679

RESUMO

BACKGROUND: Depression is one of the most prominent and debilitating symptoms in individuals with multiple sclerosis (MS), yet there is currently no consensus on the best instruments for depression screening in MS. More head to head comparisons of available screening instruments are needed to advise MS researchers and clinicians. METHODS: A cross-sectional comparison of the effectiveness of screening for MDD using multiple patient reported outcome (PRO) screeners against a modified SCID telephone interview was completed in 164 individuals with MS. Stratum goals were set for depression levels to ensure participation by people with borderline and higher levels of depression. Criterion standard was a modified SCID MDD module. PRO measures included the PHQ-9, BDI-FS, PROMIS depression, Neuro-QOL depression, M-PHQ-2, PHQ-2, and CESD. RESULTS: 48 (29%) individuals met the modified SCID criteria for MDD. The sensitivity of the PRO measures ranged from 60% to 100% while specificity ranged from 46% to 86%. The ROC area for the PRO measures ranged from 0.79 to 0.83. Revised (higher) cutoff scores were suggested by the ROC analyses for most self-reported screeners. LIMITATIONS: Enrollment was stopped early because of difficulties with recruitment. Several SCID recording could not be reviewed and diagnosis confirmed. CONCLUSIONS: CESD-10 and PHQ9 had the best diagnostic performance using optimal cutoffs, but no one PRO measure stood out as significantly better than any other. Even when revised cutoff scores were used, none of the self-reported screeners identified people with MDD with adequate accuracy. More accurate self-reported screeners would facilitate diagnosing of MDD for both research and clinical purposes.


Assuntos
Transtorno Depressivo Maior/etiologia , Transtorno Depressivo Maior/terapia , Esclerose Múltipla/complicações , Esclerose Múltipla/psicologia , Estudos Transversais , Transtorno Depressivo Maior/psicologia , Escolaridade , Etnicidade , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Curva ROC , Reprodutibilidade dos Testes , Fatores Socioeconômicos , Inquéritos e Questionários , Resultado do Tratamento
11.
Rehabil Psychol ; 60(1): 81-90, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25602361

RESUMO

OBJECTIVE: Over a quarter million individuals in the United States have multiple sclerosis (MS). Chronic pain and depression are disproportionately high in this population. The purpose of this study was to examine the relationship between chronic pain and depression in MS and to examine potentially meditational effects of anxiety, fatigue, and sleep. METHOD: We used cross-sectional data from self-reported instruments measuring multiple symptoms and quality of life indicators in this study. We used structural equation modeling to model direct and indirect effects of pain on depression in a sample of 1,245 community-dwelling individuals with MS. Pain interference, depression, fatigue, and sleep disturbance were modeled as latent variables with 2 to 3 indicators each. The model controlled for age, sex, disability status (Expanded Disability Status Scale), and social support. RESULTS: A model with indirect effects of pain on depression had adequate fit and accounted for nearly 80% of the variance in depression. The effects of chronic pain on depression were almost completely mediated by fatigue, anxiety, and sleep disturbance. Higher pain was associated with greater fatigue, anxiety, and sleep disturbance, which in turn were associated with higher levels of depression. The largest mediating effect was through fatigue. Additional analyses excluded items with common content and suggested that the meditational effects observed were not attributable to content overlap across scales. CONCLUSION: Individuals living with MS who report high levels of chronic pain and depressive symptoms may benefit from treatment approaches that can address sleep, fatigue, and anxiety.


Assuntos
Transtornos de Ansiedade/complicações , Dor Crônica/complicações , Transtorno Depressivo/complicações , Fadiga/complicações , Esclerose Múltipla/complicações , Transtornos do Sono-Vigília/complicações , Transtornos de Ansiedade/psicologia , Dor Crônica/psicologia , Estudos Transversais , Transtorno Depressivo/psicologia , Fadiga/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Transtornos do Sono-Vigília/psicologia , Inquéritos e Questionários
12.
Rehabil Psychol ; 59(2): 220-229, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24661030

RESUMO

PURPOSE: This study evaluated psychometric properties of the Patient Health Questionnaire-9 (PHQ-9), the Center for Epidemiological Studies Depression Scale-10 (CESD-10), and the 8-item PROMIS Depression Short Form (PROMIS-D-8; 8b short form) in a sample of individuals living with multiple sclerosis (MS). RESEARCH METHOD: Data were collected by a self-reported mailed survey of a community sample of people living with MS (n = 455). Factor structure, interitem reliability, convergent/discriminant validity and assignment to categories of depression severity were examined. RESULTS: A 1-factor, confirmatory factor analytic model had adequate fit for all instruments. Scores on the depression scales were more highly correlated with one another than with scores on measures of pain, sleep disturbance, and fatigue. The CESD-10 categorized about 37% of participants as having significant depressive symptoms. At least moderate depression was indicated for 24% of participants by PHQ-9. PROMIS-D-8 identified 19% of participants as having at least moderate depressive symptoms and about 7% having at least moderately severe depression. None of the examined scales had ceiling effects, but the PROMIS-D-8 had a floor effect. CONCLUSIONS: Overall, scores on all 3 scales demonstrated essential unidimensionality and had acceptable interitem reliability and convergent/discriminant validity. Researchers and clinicians can choose any of these scales to measure depressive symptoms in individuals living with MS. The PHQ-9 offers validated cutoff scores for diagnosing clinical depression. The PROMIS-D-8 measure minimizes the impact of somatic features on the assessment of depression and allows for flexible administration, including Computerize Adaptive Testing (CAT). The CESD-10 measures 2 aspects of depression, depressed mood and lack of positive affect, while still providing an interpretable total score.


Assuntos
Transtorno Depressivo/diagnóstico , Transtorno Depressivo/psicologia , Esclerose Múltipla/psicologia , Escalas de Graduação Psiquiátrica/normas , Inquéritos e Questionários/normas , Transtorno Depressivo/complicações , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/complicações , Escalas de Graduação Psiquiátrica/estatística & dados numéricos , Psicometria , Reprodutibilidade dos Testes
13.
Disabil Health J ; 7(1): 124-30, 2014 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-24411517

RESUMO

BACKGROUND: Health risks of obesity are well known, but effects of obesity on health-related quality of life (HRQOL) have not been well-studied in people with physical disabilities. OBJECTIVE/HYPOTHESIS: We examined the association between obesity and HRQOL in people with disabilities relative to the general US population. We hypothesized (a) overall, individuals with disabilities will report worse HRQOL than the general US population and (b) obese individuals with disabilities will report worse HRQOL than non-obese individuals. METHODS: Individuals with muscular dystrophy, multiple sclerosis, post-polio syndrome, and spinal cord injury (N = 1849) completed Patient Reported Outcomes Measurement Information System (PROMIS) measures of fatigue, pain interference, physical and social function, depression, sleep disturbance, and sleep-related impairment. Participants were classified as obese or non-obese based on self-reported weight and height (BMI) and/or waist circumference (WC). PROMIS T-scores were compared to norms and between obesity groups. RESULTS: Mean BMI was 26.4 kg/m(2) with 23.4% classified as obese. Mean WC was 37.5 inches (males) and 34.0 inches (females); 26.4% reported abdominal obesity. Based on BMI and/or WC, 33.3% (n = 616) were classified obese. Compared to PROMIS norms, obese individuals reported worse HRQOL on all domains (p < 0.0001). Compared to non-obese individuals, obese individuals reported worse functioning on all domains except depression (p < 0.01). Obese individuals with MS and MD reported worse outcomes than non-obese counterparts. CONCLUSIONS: Obesity in people with physical disabilities is associated with poorer HRQOL. More research is needed to inform clinicians in identifying obese patients and helping them achieve healthy weight, reduce symptom burden, and improve QOL.


Assuntos
Pessoas com Deficiência , Nível de Saúde , Obesidade/complicações , Qualidade de Vida , Adulto , Idoso , Índice de Massa Corporal , Depressão , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/complicações , Distrofias Musculares/complicações , Obesidade/epidemiologia , Obesidade Abdominal/epidemiologia , Prevalência , Valores de Referência , Autorrelato , Fatores Sexuais , Estados Unidos/epidemiologia , Circunferência da Cintura
14.
Phys Med Rehabil Clin N Am ; 24(4): 721-30, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24314689

RESUMO

Multiple sclerosis continues to present a host of rehabilitation challenges, specifically the impact of secondary "hidden" conditions on quality of life, participation, and employment. To discuss the current state of rehabilitation research and direct future research endeavors, a state of the science conference was held in November 2010 in Alexandria, Virginia. The conference was presented by the University of Washington's Multiple Sclerosis Rehabilitation Research and Training Center and focused on the current state of research into secondary conditions, outcomes measurement, employment, and the utility of psychotherapeutic interventions. This article discusses the details and recommendations of this conference.


Assuntos
Pesquisa Biomédica , Esclerose Múltipla/reabilitação , Transtornos Cognitivos/terapia , Depressão/terapia , Emprego , Fadiga/terapia , Humanos , Esclerose Múltipla/complicações , Manejo da Dor , Avaliação de Resultados da Assistência ao Paciente , Qualidade de Vida , Autocuidado , Transtornos Intrínsecos do Sono/terapia , Inquéritos e Questionários
15.
Qual Life Res ; 22(10): 2769-76, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23539469

RESUMO

INTRODUCTION: To help researchers in multiple sclerosis (MS) take advantage of the measurement properties of the PROMIS Pain Interference instrument while maintaining continuity with previous research, we developed and tested a crosswalk table to transform Brief Pain Inventory pain interference scale (BPI-PI) scores to PROMIS-PI short form (PROMIS-PI SF) scores. METHODS: The BPI-PI and the PROMIS-PI SF were administered in two studies that included persons with MS. One sample of 369 participants served as a developmental calibration sample, and a separate sample of 360 served as a validation sample. The crosswalk development included dimensionality assessment, item-level parameter estimation, and assessment of accuracy. BPI-PI and PROMIS-PI T scores were obtained from participants' item responses, and using the crosswalk table, PROMIS-PI T scores were derived from responses to the BPI-PI items. Differences between observed and crosswalked T scores were compared in both samples. RESULTS: For BPI-PI summary scores ranging from 0 to 10, corresponding T scores ranged from 38.6 to 81.2. The mean difference between observed and crosswalked T scores was 0.51 (SD = 3.9) in the calibration sample and -1.47 (SD = 4.2) in the validation sample. Approximately 80 % of crosswalked scores in the calibration sample were within four score points of the observed PROMIS-PI SF scores, and 70 % were within four points in the validation sample. In both samples, the largest differences were at lower levels of the pain interference continuum. CONCLUSIONS: Crosswalked pain interference scores adequately approximated observed PROMIS-PI SF scores in both the calibration and validation samples. MS researchers and clinicians interested in adopting the PROMIS instruments can use this table to transform BPI-PI scores to enable comparisons with other studies and to maintain continuity with previous research.


Assuntos
Dor Crônica/diagnóstico , Esclerose Múltipla/complicações , Medição da Dor/instrumentação , Dor Crônica/psicologia , Feminino , Humanos , Masculino , Manejo da Dor , Psicometria/estatística & dados numéricos , Qualidade de Vida , Inquéritos e Questionários
16.
Int J MS Care ; 15(2): 99-106, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24453769

RESUMO

People with multiple sclerosis (MS) must manage the day-to-day effects of the disease on their lives. Self-management interventions may be helpful in this challenge. An international, multidisciplinary consensus conference was held on November 15, 2010, by the University of Washington's Rehabilitation Research and Training Center for Multiple Sclerosis (MS RRTC), with funding from the Consortium of Multiple Sclerosis Centers (CMSC) and the National Institute on Disability and Rehabilitation Research (NIDRR), to discuss the concept of self-management for people with MS. The specific goals of the consensus conference were as follows: 1) review the current research on self-management and related issues in chronic disability and specifically in MS; 2) review optimal research methodologies, outcome measurement tools, program planning frameworks, and dissemination strategies for self-management research; and 3) establish recommendations on the next steps necessary to develop, adapt, and test self-management interventions for people with MS. The consensus conference and this document are the initial steps toward achieving the stated goals. Participants in the consensus conference concluded that it is necessary to: 1) define an empirically based conceptual model of self-management for people with MS; 2) establish reliable and valid self-management outcome measures; 3) use best practices to validate models of self-management interventions; and 4) plan dissemination and knowledge translation of interventions once their effectiveness is established.

17.
Arch Phys Med Rehabil ; 93(8 Suppl): S177-84, 2012 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-22840882

RESUMO

A systematic review (SR) is an essential component of evidence-based practice, because it synthesizes information on a particular topic that is necessary to inform health-related decision making. The purpose of this article is to document the process of producing a high-quality SR within the field of rehabilitation in contrast to other fields (eg, pharmaceutic research). We describe the notable methodologic challenges to producing high-quality SRs for rehabilitation researchers. Broadly, we outline how the quality of SRs is evaluated and suggest mechanisms for researchers to address potential pitfalls. Because meaningful SRs can and should be conducted in this field, we provide practical guidance regarding how to conduct such an SR. We outline a series of 8 important steps in the production of an SR: forming a committee, creating a development plan, conducting a literature review, selecting articles for inclusion, extracting data, preparing tables of evidence, facilitating external review and publication, and forming conclusions and recommendations. For each step of the SR process, we provide detailed description about the methodologic decisions involved and recommended strategies that researchers can implement to produce a high-quality SR. Using these preestablished steps and procedures as a guideline will not only help to increase the efficiency of the SR process, but also to improve the quality. The availability of high-quality SRs with plain language summaries promotes access to the best quality information for all involved in decision making.


Assuntos
Medicina Baseada em Evidências , Reabilitação/métodos , Reabilitação/normas , Literatura de Revisão como Assunto , Humanos
18.
Arch Phys Med Rehabil ; 92(10 Suppl): S12-9, 2011 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-21958918

RESUMO

To fully capture the impact of a disease or condition on the lives of individuals, patient-reported outcomes are considered a necessary component of health measurement in rehabilitation. This article provides an overview of the involvement of rehabilitation stakeholders in the development of sound measurement tools for the Patient-Reported Outcomes Measurement Information System (PROMIS), a National Institutes of Health-funded initiative. PROMIS is a multisite study that included many different populations. We focus on the involvement of people with several chronic conditions, including multiple sclerosis, spinal cord injury, and arthritis, in the development of PROMIS measures. We describe both qualitative and quantitative methods used, including expert panels, focus groups, cognitive interviews, and item response theory modeling, which resulted in enhanced utility of PROMIS measures in rehabilitation. Measures include a set of global health items and 12 item banks representing 6 domains. Scores are reported in the T score metric (mean ± SD, 50 ± 10) and centered on mean values from the U.S. general population. The PROMIS item banks measure quality of life and symptoms of people with chronic conditions and have the potential to enhance research and clinical practice by facilitating comparisons of scores across domains and populations.


Assuntos
Artrite/reabilitação , Esclerose Múltipla/reabilitação , National Institutes of Health (U.S.) , Avaliação de Resultados em Cuidados de Saúde , Reabilitação/normas , Traumatismos da Medula Espinal/reabilitação , Comportamento Cooperativo , Bases de Dados como Assunto , Avaliação da Deficiência , Grupos Focais , Pesquisa sobre Serviços de Saúde , Humanos , Sistemas de Informação , Entrevistas como Assunto , Modelos Teóricos , Autorrevelação , Estados Unidos
19.
Disabil Health J ; 3(3): 155-61, 2010 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-21122780

RESUMO

BACKGROUND: Assistive technology (AT) is one strategy to mitigate or eliminate barriers to independence for individuals with disabilities, including those with spina bifida (SB). However, little is known about current use and costs of AT for people with SB, including the cost burden to medical insurance payees. OBJECTIVE: The aim of this study was to evaluate frequency of AT purchases and their associated costs for individuals with SB covered by the Washington State Medicaid program. Additionally, we sought to compare Medicaid reimbursement for AT to the overall Medicaid reimbursement for all medical care for these individuals. METHODS: Data included all electronic claims and eligibility records of persons covered by the Medicaid program over a 4-year period (2001-2004) who had at least one service with a coded diagnosis of SB. Procedure codes were reviewed and grouped into the following AT categories: manual wheelchairs, powered wheelchairs, wheelchair cushions and seats, wheelchair accessories and repairs, wheelchair rental, ambulatory aids, orthotic and prosthetic devices, positioning aids, bathroom equipment, beds and bed accessories, and communication and hearing aids. Age group analyses were conducted after dividing patients into 3 age groups (0-15, 16-25, and 26+). Further subgroup analyses were done for individuals with dual or capitated medical coverage compared with those who had fee-for-service Medicaid-only coverage. RESULTS: A total of 984 individuals with at least one diagnosis of SB during the 4-year study period were identified. On average, approximately one third of individuals made claims for some type of AT per year; the majority of these AT claims (87%) were for mobility-related AT. Average annual Medicaid cost of AT was $494 per enrollee and AT accounted for 3.3% of all Medicaid costs for these individuals. AT-related costs were highest for those aged 0-15 years and lowest for those aged 16-25 years. Persons with only fee-for-service Medicaid coverage had more than twice the annualized Medicaid AT-related expenditures compared to those with additional coverage or who were covered under a Medicaid capitation plan. CONCLUSIONS: Medicaid reimbursement for AT, as classified in this study, is a relatively low percentage of overall medical costs for individuals with SB. Because of the small percentage of non-mobility-related AT paid for in this study, we believe there may be a substantial unmet need for AT in this population and/or that individuals with SB may have significant AT-related out-of-pocket expenses. Given its large potential impact and relatively low cost burden to Medicaid, AT is a "good buy" and coverage for AT should be expanded.


Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência/economia , Pessoas com Deficiência/estatística & dados numéricos , Reembolso de Seguro de Saúde/economia , Medicaid/economia , Disrafismo Espinal/economia , Cadeiras de Rodas/economia , Adolescente , Adulto , Fatores Etários , Criança , Pré-Escolar , Auxiliares de Comunicação para Pessoas com Deficiência/estatística & dados numéricos , Pessoas com Deficiência/reabilitação , Feminino , Custos de Cuidados de Saúde , Humanos , Lactente , Recém-Nascido , Reembolso de Seguro de Saúde/estatística & dados numéricos , Masculino , Medicaid/estatística & dados numéricos , Aparelhos Ortopédicos/economia , Aparelhos Ortopédicos/estatística & dados numéricos , Estados Unidos , Washington , Cadeiras de Rodas/estatística & dados numéricos , Adulto Jovem
20.
Clin Epidemiol ; 2010(2): 99-106, 2010 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-20838467

RESUMO

BACKGROUND: Recent research indicates that sleep disturbances are common in persons with multiple sclerosis (MS), though research to date has primarily focused on the relationship between fatigue and sleep. In order to improve treatment of sleep disorders in MS, a better understanding of other factors that contribute to MS sleep disturbance and use of sleep medications in this population is needed. METHODS: Individuals with MS (N = 473) involved in an ongoing self-report survey study were asked to report on use of over-the-counter and prescription sleep medications. Participants completed the Medical Outcomes Study Sleep (MOSS) scale and other common self-report symptom measures. Multiple regression was used to evaluate factors associated with sleep problems and descriptive statistics were generated to examine use of sleep medications. RESULTS: The mean score on the MOSS scale was 35.9 (standard deviation, 20.2) and 46.8% of the sample had moderate or severe sleep problems. The majority of participants did not use over-the-counter (78%) or prescription (70%) sleep medications. In a regression model variables statistically significantly associated with sleep problems included depression, nighttime leg cramps, younger age, pain, female sex, fatigue, shorter duration of MS, and nocturia. The model explained 45% of the variance in sleep problems. Of the variance explained, depression accounted for the majority of variance in sleep problems (33%), with other variables explaining significantly less variance. CONCLUSIONS: Regression results indicate that fatigue may play a minor role in sleep disturbance in MS and that clinicians should consider the interrelationship between depression and sleep problems when treating either symptom in this population. More research is needed to explore the possibility of under-treatment of sleep disorders in MS and examine the potential effectiveness of nonpharmaceutical treatment options.

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