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BACKGROUND: The EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three patient organisations have ensured that the registry is patient-centred, meaningful, and impactful. The consenting process covers other uses, such as research, cohort finding and trial readiness. RESULTS: The registry has three-layered datasets, with European Commission-mandated data elements (EU-CDEs), a set of cross-neuromuscular data elements (NMD-CDEs) and a dataset of disease-specific data elements that function modularly (DS-DEs). The registry captures clinical, neuromuscular imaging, neuromuscular histopathology, biological and genetic data and patient-reported outcomes in a computer-interpretable format using selected ontologies and classifications. The EURO-NMD registry is connected to the EURO-NMD Registry Hub through an interoperability layer. The Hub provides an entry point to other neuromuscular registries that follow the FAIR data stewardship principles and enable GDPR-compliant information exchange. Four national or disease-specific patient registries are interoperable with the EURO-NMD Registry, allowing for federated analysis across these different resources. CONCLUSIONS: Collectively, the Registry Hub brings together data that are currently siloed and fragmented to improve healthcare and advance research for neuromuscular diseases.
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Doenças Neuromusculares , Humanos , Sistema de Registros , Doenças Neuromusculares/genética , Doenças RarasRESUMO
BACKGROUND: Facioscapulohumeral muscular dystrophy (FSHD) is among the most prevalent muscular dystrophies and currently has no treatment. Clinical and genetic heterogeneity are the main challenges to a full comprehension of the physiopathological mechanism. Improving our knowledge of FSHD is crucial to the development of future therapeutic trials and standards of care. National FSHD registries have been set up to this end. The French National Registry of FSHD combines a clinical evaluation form (CEF) and a self-report questionnaire (SRQ), filled out by a physician with expertise in neuromuscular dystrophies and by the patient, respectively. Aside from favoring recruitment, our strategy was devised to improve data quality. Indeed, the pairwise comparison of data from 281 patients for 39 items allowed for evaluating data accuracy. Kappa or intra-class coefficient (ICC) values were calculated to determine the correlation between answers provided in both the CEF and SRQ. RESULTS: Patients and physicians agreed on a majority of questions common to the SRQ and CEF (24 out of 39). Demographic, diagnosis- and care-related questions were generally answered consistently by the patient and the medical practitioner (kappa or ICC values of most items in these groups were greater than 0.8). Muscle function-related items, i.e. FSHD-specific signs, showed an overall medium to poor correlation between data provided in the two forms; the distribution of agreements in this section was markedly spread out and ranged from poor to good. In particular, there was very little agreement regarding the assessment of facial motricity and the presence of a winged scapula. However, patients and physicians agreed very well on the Vignos and Brooke scores. The report of symptoms not specific to FSHD showed general poor consistency. CONCLUSIONS: Patient and physician answers are largely concordant when addressing quantitative and objective items. Consequently, we updated collection forms by relying more on patient-reported data where appropriate. We hope the revised forms will reduce data collection time while ensuring the same quality standard. With the advent of artificial intelligence and automated decision-making, high-quality and reliable data are critical to develop top-performing algorithms to improve diagnosis, care, and evaluate the efficiency of upcoming treatments.
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Distrofia Muscular Facioescapuloumeral , Médicos , Inteligência Artificial , Humanos , Distrofia Muscular Facioescapuloumeral/diagnóstico , Medidas de Resultados Relatados pelo Paciente , Sistema de RegistrosRESUMO
We report here the draft genome sequence of Bacillus atrophaeus strain 930029. Strain 930029 shows evidence of drift, based on a comparison to the corresponding source strain publicly available today.
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BACKGROUND: Diabetes mellitus is a potent risk factor for urinary incontinence. Previous studies of incontinence in patients with diabetes have focused on younger, healthier patients. Our objective was to characterize risk factors for urinary incontinence among frail older adults with diabetes mellitus in a real-world clinical setting. METHODS: We performed a cross-sectional analysis on enrollees at On Lok (the original Program for All-Inclusive Care of the Elderly) between October 2004 and December 2010. Enrollees were community-dwelling, nursing home-eligible older adults with diabetes mellitus (N = 447). Our outcome was urinary incontinence measures (n = 2602) assessed every 6 months as "never incontinent", "seldom incontinent" (occurring less than once per week), or "often incontinent" (occurring more than once per week). Urinary incontinence was dichotomized ("never" versus "seldom" and "often" incontinent). We performed multivariate mixed effects logistic regression analysis with demographic (age, gender and ethnicity), geriatric (dependence on others for ambulation or transferring; cognitive impairment), diabetes-related factors (hemoglobin A1c level; use of insulin and other glucose-lowering medications; presence of renal, ophthalmologic, neurological and peripheral vascular complications), depressive symptoms and diuretic use. RESULTS: The majority of participants were 75 years or older (72%), Asian (65%) and female (66%). Demographic factors independently associated with incontinence included older age (OR for age >85, 3.13, 95% CI: 2.15-4.56; Reference: Age <75) and African American or other race (OR 2.12, 95% CI: 1.14-3.93; Reference: Asian). Geriatric factors included: dependence on others for ambulation (OR 1.48, 95% CI: 1.19-1.84) and transferring (OR 2.02, 95% CI: 1.58-2.58) and being cognitively impaired (OR 1.41, 95% CI: 1.15-1.73). Diabetes-related factors associated included use of insulin (OR 2.62, 95% CI: 1.67-4.13) and oral glucose-lowering agents (OR 1.81, 95% CI: 1.33-2.45). Urinary incontinence was not associated with gender, hemoglobin A1c level or depressive symptoms. CONCLUSIONS: Geriatric factors such as the inability to ambulate or transfer independently are important predictors of urinary incontinence among frail older adults with diabetes mellitus. Clinicians should address mobility and cognitive impairment as much as diabetes-related factors in their assessment of urinary incontinence in this population.
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Diabetes Mellitus/epidemiologia , Idoso Fragilizado , Avaliação Geriátrica/métodos , Incontinência Urinária/epidemiologia , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , California/epidemiologia , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Prognóstico , Estudos Retrospectivos , Fatores de Risco , Incontinência Urinária/diagnóstico , Incontinência Urinária/etiologiaRESUMO
OBJECTIVES: To measure the rates of hospitalization, readmission, and potentially avoidable hospitalization (PAH) in the Program of All-Inclusive Care for the Elderly (PACE). DESIGN: Retrospective study. SETTING PACE PARTICIPANTS: PACE enrollees. MEASUREMENTS: Hospitalization and PAH rates were measured per 1,000 person-years. Readmission was defined as any return to the hospital within 30 days of prior hospital discharge. PAHs were defined as hospitalizations for conditions that previously established criteria have identified as possibly preventable or manageable without hospitalization. RESULTS: Rate of hospitalization was 539/1,000, vs 962/1,000 for dually eligible aged or disabled waiver (ADW) enrollees. Thirty-day readmission was 19.3%, compared with 22.9% for the national population of dually eligible older enrollees. PAH rate was 100/1,000, compared with 250/1,000 for dually eligible ADW enrollees. Considerable variation was observed between sites. CONCLUSION: PACE enrollees experienced lower rates of hospitalization, readmission, and PAH than similar populations. Variations in hospitalization rates between PACE sites suggest opportunities for quality improvement.
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Serviços de Saúde Comunitária/economia , Idoso Fragilizado , Serviços de Saúde para Idosos/economia , Hospitalização/economia , Assistência de Longa Duração/economia , Programas de Assistência Gerenciada/economia , Idoso , Idoso de 80 Anos ou mais , Feminino , Hospitalização/tendências , Humanos , Masculino , Medicaid/economia , Medicare/economia , Estudos Retrospectivos , Estados UnidosRESUMO
BACKGROUND: To explore clinician choice of whether to discuss prognosis with their frail older patients. DESIGN: Qualitative interview study. SETTING: Primary care clinicians were recruited from nursing homes, community-based clinics, and academic medical centers. PARTICIPANTS: Three geriatric nurse practitioners, nine geriatricians, five general internists, and three family medicine physicians with a mean age of 44 and a mean 12 years in practice. Seventeen clinicians had patient panels with 80% or more community-dwelling outpatients, 13 had patient panels with 50% or more patients aged 85 and older, and 16 had patient panels with 25% or more of patients in a minority group (Asian, African American, Hispanic). MEASUREMENTS: Clinicians were asked to describe their practice of discussing long-term (<5-year) and short-term (<1-year and 3-month) prognosis. Responses were analyzed qualitatively using constant comparison until thematic saturation was reached. RESULTS: Clinicians reported individualizing the decision to discuss prognosis with their frail older patients based on clinical circumstances. Common reasons for discussing prognosis included patient had a specific condition with a limited prognosis, to give patients time to prepare, to promote informed medical decision-making, and when patients or families prompted the conversation. Common reasons not to discuss included maintaining hope and avoiding anxiety, cognitive impairment or patient unable to understand prognosis, respect for patients' cultural values, and long-term prognosis too uncertain to be useful. CONCLUSION: Clinicians caring for frail older adults are generally willing to discuss short- but not long-term prognosis. Clinicians balance individual factors when deciding whether to discuss prognosis.
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Atitude do Pessoal de Saúde , Tomada de Decisões , Pessoas com Deficiência/psicologia , Idoso Fragilizado , Casas de Saúde , Relações Médico-Paciente/ética , Revelação da Verdade/ética , Atividades Cotidianas , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Preferência do Paciente , Prognóstico , Pesquisa Qualitativa , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
PURPOSE: Researchers often use the term "successful aging" to mean freedom from disability, yet the perspectives of elders living with late-life disability have not been well described. The purpose of this study was to explore the meaning of successful aging among a diverse sample of community-dwelling elders with late-life disability. DESIGN AND METHODS: Using qualitative grounded theory methodology, we interviewed 56 African American, White, Cantonese-speaking Chinese, and Spanish-speaking Latino disabled elders who participate in On Lok Lifeways, a Program of All-inclusive Care for the Elderly. Through semi-structured interviews with open-ended questions, we explored the elders' perceptions of what successful aging and being old meant to them. RESULTS: Despite experiencing late-life disability, most participants felt they had aged successfully. An overarching theme was that aging results in Living in a New Reality, with two subthemes: Acknowledging the New Reality and Rejecting the New Reality. Participants achieved successful aging by using adaptation and coping strategies to align their perception of successful aging with their experiences. Themes were common across race/ethnic groups but certain strategies were more prominent among different groups. IMPLICATIONS: Across race and ethnic groups, most of these participants with late-life disability felt they had aged successfully. Thus, successful aging involves subjective criteria and has a cultural context that is not captured in objective measurements. Understanding elders' perception will help establish common ground for communication between clinicians and elders and identify the most appropriate interventions to help elders achieve and maintain the experience of successful aging.
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Atividades Cotidianas , Adaptação Psicológica , Atitude Frente a Saúde , Pessoas com Deficiência/psicologia , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Etnicidade , Feminino , Humanos , Entrevista Psicológica/métodos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Pesquisa Qualitativa , Estados UnidosRESUMO
OBJECTIVES: To determine whether glycosylated hemoglobin (HbA1c) levels predict functional decline in older adults. DESIGN: Longitudinal cohort study. PARTICIPANTS: Community-dwelling, nursing home (NH)-eligible individuals with diabetes mellitus enrolled at On Lok between October 2002 and December 2008 (367 participants, 1,579 HbA1c measurements). SETTING: On Lok Lifeways, the original model for Programs of All-Inclusive Care for the Elderly. MEASUREMENTS: The outcomes were functional decline or death at 2 years. The primary predictor was HbA1c. Age, sex, race and ethnicity, baseline function, comorbid conditions, length of time enrolled at On Lok, insulin use, and clustering of HbA1c within participants were adjusted for with mixed-effects Poisson regression. RESULTS: Mean age was 80, and 185 participants (50%) were taking insulin. Sixty-three percent of participants experienced functional decline, and 75% experienced death or functional decline during the study period. At 2 years, higher HbA1c was associated with less functional decline or death (P for trend = .006). Accounting for clustering and confounding factors, HbA1c of 8.0% to 8.9% was associated with a lower likelihood (relative risk = 0.88, 95% confidence interval = 0.79-0.99) of functional decline or death than HbA1c of 7.0% to 7.9%. CONCLUSION: In community-dwelling, NH-eligible individuals with diabetes mellitus, HbA1c of 8.0% to 8.9% is associated with better functional outcomes at 2 years than HbA1c of 7.0% to 7.9%, suggesting that the current American Geriatrics Society guideline recommending a HbA1c target of 8.0% or less for older adults with limited life expectancy may be lower than necessary to maintain function.
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Atividades Cotidianas , Diabetes Mellitus/sangue , Diabetes Mellitus/fisiopatologia , Hemoglobinas Glicadas/análise , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Diabetes Mellitus/tratamento farmacológico , Diabetes Mellitus/mortalidade , Feminino , Humanos , Hipoglicemiantes/uso terapêutico , Insulina/uso terapêutico , Estudos Longitudinais , Masculino , Casas de Saúde , Distribuição de Poisson , Fatores de RiscoRESUMO
OBJECTIVES: To determine perceived quality of life in a diverse population of elderly adults with late-life disability. DESIGN: Qualitative cross-sectional study. SETTING: Community-dwelling participants were recruited from San Francisco's On Lok Lifeways program, the first Program of All-inclusive Care for the Elderly. On Lok enrollees meet Medicaid criteria for nursing home placement. PARTICIPANTS: Sixty-two elderly adults with a mean age of 78 and a mean 2.4 activity of daily living dependencies and 6.6 instrumental activity of daily living dependencies were interviewed. Respondents were 63% female, 24% white, 19% black, 18% Latino, 32% Chinese American, and 6% other race. MEASUREMENTS: Elderly adults who scored higher than 17 points on the Mini-Mental State Examination were interviewed. Interviews were conducted in English, Spanish, and Cantonese. Respondents were asked to rate their overall quality of life on a 5-point scale. Open-ended questions explored positive and negative aspects of participants' daily experiences. Interviews were analyzed using modified grounded theory and digital coding software. RESULTS: Eighty-seven percent of respondents rated their quality of life in the middle range of the quality-of-life spectrum (fair to very good). Themes were similar across ethnic groups. Most themes could be grouped into four domains that dependent elderly adults considered important to their quality of life: physical (e.g., pain), psychological (e.g., depression), spiritual or religious (e.g., religious coping), and social (e.g., life-space). Dignity and a sense of control were identified as themes that are the most closely tied to overall quality of life. CONCLUSION: Factors that influence quality of life in late-life disability were similar across ethnic groups. As the number of elderly adults from diverse backgrounds with late life disability increases in the United States, interventions should be targeted to maximize daily sense of control and dignity.
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Pessoas com Deficiência/psicologia , Qualidade de Vida , Atividades Cotidianas , Idoso , Estudos Transversais , Feminino , Humanos , Entrevista Psicológica , Masculino , Escalas de Graduação Psiquiátrica , Cadeiras de RodasRESUMO
BACKGROUND: Prognosis is critical in individualizing care for older adults with late life disability. Evidence suggests that preferences for prognostic information may be culturally determined. Yet little is known about the preferences of diverse elders for discussing prognosis. OBJECTIVE: To determine the preferences for discussing prognosis of a diverse sample of older adults with late-life disability. DESIGN & PARTICIPANTS: We interviewed 60 older adults with mean age 78 and mean 2.5 Activities of Daily Living dependencies. Participants were recruited from San Francisco's On Lok program, the first Program of All-inclusive Care for the Elderly (PACE). Participants were interviewed in English, Spanish, and Cantonese, and responded to scenarios in which their doctors estimated they had 5 years and 1 year left to live. Open-ended questions explored the reasons for their responses. Results were analyzed qualitatively using grounded theory. KEY RESULTS: Sixty-five percent of participants wanted to discuss the prognosis if their doctor estimated they had <5 years to live and 75% if the estimate was <1 year. Three themes were prominent among patients who wanted to discuss prognosis: to prepare, to make the most of the life they had left, and to make medical or health-related decisions. Those who preferred not to discuss prognosis described emotional difficulty, the uncertainty of prognosis, or that it would not be useful. Nearly all participants said that doctors should not make assumptions based on race or ethnicity, though differences between ethnic groups emerged. CONCLUSIONS: Most patients in this diverse sample of disabled elders were interested in discussing prognosis, while a substantial minority was not. Among those participants who preferred to discuss prognosis, many said that prognostic information would be important as they made difficult medical and personal decisions in late-life. Clinicians should inquire about preferences for discussing prognosis before sharing prognostic estimates.
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Tomada de Decisões , Pessoas com Deficiência/psicologia , Preferência do Paciente , Relações Médico-Paciente , Qualidade de Vida/psicologia , Revelação da Verdade , Atividades Cotidianas , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Preferência do Paciente/psicologia , Prognóstico , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To determine the hypo- and hyperglycemic outcomes associated with implementing the American Geriatrics Society (AGS) guideline for a glycosylated hemoglobin (HbA1c) level of less than 8% in frail older adults with diabetes mellitus (DM). DESIGN: Guideline implementation. SETTING: Program of All-Inclusive Care for the Elderly. PARTICIPANTS: All participants in the before (October 2002-December 2004, n=338), early (January 2005-June 2006, n=289) and late (July 2006-December 2008, n=385) periods of guideline implementation with a diagnosis of DM and at least one HbA1c measurement. INTERVENTION: Clinician education in 2005 with annual monitoring of the proportion of each clinician's patients with DM with HbA1c less than 8%. MEASUREMENTS: Hypoglycemia (blood glucose<50 mg/dL), hyperglycemia (blood glucose>400 mg/dL), and severe hypoglycemia (emergency department (ED) visit for hypoglycemia). RESULTS: Participants in the before, early, and late periods were similar in age, race and ethnicity, comorbidities, and functional dependence. Antihyperglycemic medication use was greater in the late period, with more participants using metformin (28% before, 42% late, P<.001) and insulin (23% before, 34% late, P<.001) and achieving the AGS glycemic target of HbA1c of less than 8% (74% before, 84% late, P<.001). Episodes of hyperglycemia (per 100 person-years) were dramatically lower in the late period (159 before, 46 late, P<.001), and episodes of hypoglycemia were similar (10.1 before, 9.3 late, P=.50). There were more episodes of severe hypoglycemia in the early period (1.1 before, 2.9 early, P=.03). CONCLUSION: Implementing the AGS glycemic control guideline for frail older adults led to fewer hyperglycemic episodes but more severe hypoglycemic episodes requiring ED visits in the early implementation period. Future glycemic control guideline implementation efforts should be coupled with close monitoring for severe hypoglycemia in the early guideline implementation period.
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Hipoglicemiantes/uso terapêutico , Insulina/uso terapêutico , Metformina/uso terapêutico , Guias de Prática Clínica como Assunto , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Glicemia/metabolismo , Diabetes Mellitus/sangue , Diabetes Mellitus/tratamento farmacológico , Feminino , Hemoglobinas Glicadas/metabolismo , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Resultado do TratamentoRESUMO
A combination of gene loss and acquisition through horizontal gene transfer (HGT) is thought to drive Streptococcus thermophilus adaptation to its niche, i.e. milk. In this study, we describe an in silico analysis combining a stochastic data mining method, analysis of homologous gene distribution and the identification of features frequently associated with horizontally transferred genes to assess the proportion of the S. thermophilus genome that could originate from HGT. Our mining approach pointed out that about 17.7% of S. thermophilus genes (362 CDSs of 1,915) showed a composition bias; these genes were called 'atypical'. For 22% of them, their functional annotation strongly support their acquisition through HGT and consisted mainly in genes encoding mobile genetic recombinases, exopolysaccharide (EPS) biosynthesis enzymes or resistance mechanisms to bacteriophages. The distribution of the atypical genes in the Firmicutes phylum as well as in S. thermophilus species was sporadic and supported the HGT prediction for more than a half (52%, 189). Among them, 46 were found specific to S. thermophilus. Finally, by combining our method, gene annotation and sequence specific features, new genome islands were suggested in the S. thermophilus genome.
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Transferência Genética Horizontal , Genoma Bacteriano , Streptococcus thermophilus/genética , Algoritmos , Mineração de Dados , Bases de Dados Genéticas , Evolução Molecular , Genes Bacterianos , Ilhas Genômicas , Cadeias de Markov , Anotação de Sequência Molecular , Filogenia , Processos EstocásticosRESUMO
We present a new data mining method based on stochastic analysis (Hidden Markov Model [HMM]) and combinatorial methods for discovering new transcriptional factors in bacterial genome sequences. Sigma factor binding sites (SFBSs) were described as patterns of box1-spacer-box2 corresponding to the -35 and -10 DNA motifs of bacterial promoters. We used a high-order HMM in which the hidden process is a second-order HMM chain. Applied on the genome of the model bacterium Streptomyces coelicolor A3(2), the a posteriori state probabilities revealed local maxima or peaks whose distribution was enriched in the intergenic sequences ("iPeaks" for intergenic peaks). Short DNA sequences underlying the iPeaks were extracted and clustered by a hierarchical classification algorithm based on the SmithWaterman local similarity. Some selected motif consensuses were used as box1 (-35 motif ) in the search of a potential neighbouring box2 (-10 motif ) using a word enumeration algorithm. This new SFBS mining methodology applied on Streptomyces coelicolor was successful to retrieve already known SFBSs and to suggest new potential transcriptional factor binding sites (TFBSs). The well-defined SigR regulon (oxidative stress response) was also used as a test quorum to compare first- and second-order HMM. Our approach also allowed the preliminary detection of known SFBSs in Bacillus subtilis.
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Cadeias de Markov , Regiões Promotoras Genéticas , Streptomyces coelicolor/genética , Sítios de Ligação , Genoma Bacteriano , Modelos GenéticosRESUMO
On Lok Lifeways (On Lok), the original Program of All-inclusive Care for the Elderly (PACE), provides comprehensive health care for over a thousand community-dwelling frail seniors in San Francisco and Fremont, California. Prior to 2005, participants were referred to off-site contracted psychiatrists and psychologists for all mental health services. In 2005, On Lok introduced an on-site mental and behavioral health (MBH) team that included a psychologist, a bilingual psychiatric social worker, and a marriage and family therapist. Two part-time psychiatrists were added to the core team in 2006 and another full-time marriage and family therapist was added in 2008. We report our experience of implementing an on-site MBH program. In particular, we observed quadrupling of the number of appointments to mental health clinicians. There was a reduction in psychiatric inpatient utilization from 129.4 days/1000 patients in 2004 to 27.1 days/1000 patients in 2005. This reduction was sustained in 2006 and 2007 (41.2 and 23.6/1000 patients respectively). Inclusion of mental and behavioral health clinicians on geriatric interdisciplinary teams at On Lok appeared to improve the quality of care we provided by increasing timely access to mental health services, reduced the rate of psychiatric inpatient admissions, and reduced reported anxiety and stress of On Lok interdisciplinary teams caring for elders with mental health diagnoses.
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Serviços Comunitários de Saúde Mental/organização & administração , Acessibilidade aos Serviços de Saúde , Serviços de Saúde para Idosos/organização & administração , Transtornos Mentais/terapia , Idoso , Idoso de 80 Anos ou mais , California , Feminino , Idoso Fragilizado , Hospitalização/estatística & dados numéricos , Hospitalização/tendências , Humanos , Masculino , Transtornos Mentais/epidemiologia , Pessoa de Meia-Idade , Avaliação de Programas e Projetos de SaúdeRESUMO
BACKGROUND AND AIMS: Many frail older adults experience multiple changes in activities of daily living (ADL) functioning over the course of a year. Accurate predictions of ADL status over quarterly intervals may improve the precision of care planning for older adults who seek long-term care in the community. The study sought to develop and validate a model that predicts older adults' ADL status over quarterly intervals. METHODS: The study included 3127 enrollees from 11 Program of All Inclusive Care for the Elderly (PACE) sites. Nurses assessed ADL status quarterly. Potential predictors included baseline assessment of age, sex, race, and living situation and quarterly assessments of prior functioning, co-morbidities, prior hospitalizations, and mental status. RESULTS: Change in level of functioning occurred for 30% of quarterly observations. Predictors of functioning at the end of a quarter were prior ADL change, prior hospitalization, living with others, impaired mental status, cancer, dementia, coronary artery disease, congestive heart failure and chronic obstructive pulmonary disease. When the model was applied to the validation observations, 93% of predictions were within one level and 72% of the predictions were the same level of ADL functioning observed at the end of the quarter. CONCLUSIONS: In a sample of community-living ADL-disabled older adults, changes in functional status over a quarter were common and associated with functional and health status at the beginning of the quarter. Further validation of the model may result in an index that helps clinicians better predict future ADL needs of community-living older adults who need long-term care.
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Atividades Cotidianas , Idoso Fragilizado , Avaliação Geriátrica , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Habitação para Idosos , Humanos , Masculino , Valor Preditivo dos Testes , Instituições de Cuidados Especializados de EnfermagemRESUMO
The program of All-inclusive Care for the Elderly (PACE) is a community-based, long-term care model designed for older adults that are nursing home eligible. Bound by original design and regulations, these programs have primarily utilized a center-based ("staff") primary care physician model. However, some believe that this might hinder expansion of the PACE model. In response to this concern, three PACE programs have explored the use of "community-based" primary care physicians (CBPCPs). In an attempt to evaluate the impact of this variation in the model, we surveyed the medical director, 2 community-based primary care physicians and 6 non-physician staff members at one of these sites. Responders generally support the use of CBPCPs as a useful and productive alternative way to expand PACE services to a wider audience of eligible patients. Because some staff members perceive that CBPCPs utilize hospital and NH services at a higher rate, continued education of both CBPCPs and staff members regarding the expectations from this relationship is needed.
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Serviços de Saúde Comunitária , Assistência Integral à Saúde/organização & administração , Serviços de Saúde para Idosos/organização & administração , Médicos de Família , Idoso , Coleta de Dados , Humanos , Estados Unidos , Recursos HumanosRESUMO
OBJECTIVES: To develop and validate a prognostic index for mortality in community-living, frail elderly people. DESIGN: Cohort study of Program of All-Inclusive Care for the Elderly (PACE) participants enrolled between 1988 and 1996. SETTING: Eleven PACE sites, a community-based long-term care program that cares for frail, chronically ill elderly people who meet criteria for nursing home placement. PARTICIPANTS: Three thousand eight hundred ninety-nine PACE enrollees. The index was developed in 2,232 participants and validated in 1,667. MEASUREMENTS: Time to death was predicted using risk factors obtained from a geriatric assessment performed by the PACE interdisciplinary team at the time of enrollment. Risk factors included demographic characteristics, comorbid conditions, and functional status. RESULTS: The development cohort had a mean age of 79 (68% female, 40% white). The validation cohort had a mean age of 79 (76% female, 65% white). In the development cohort, eight independent risk factors of mortality were identified and weighted, using Cox regression, to create a risk score: male sex, 2 points; age (75-79, 2 points; 80-84, 2 points; > or = 85, 3 points); dependence in toileting, 1 point; dependence in dressing (partial dependence, 1 point; full dependence, 3 points); malignant neoplasm, 2 points; congestive heart failure, 3 points; chronic obstructive pulmonary disease, 1 point; and renal insufficiency, 3 points. In the development cohort, respective 1- and 3-year mortality rates were 6% and 21% in the lowest-risk group (0-3 points), 12% and 36% in the middle-risk group (4-5 points), and 21% and 54% in the highest-risk group (> 5 points). In the validation cohort, respective 1- and 3-year mortality rates were 7% and 18% in the lowest-risk group, 11% and 36% in the middle-risk group, and 22% and 55% in the highest-risk group. The area under the receiver operating characteristic curve for the point score was 0.66 and 0.69 in the development and validation cohorts, respectively. CONCLUSION: A multidimensional prognostic index was developed and validated using age, sex, functional status, and comorbidities that effectively stratifies frail, community-living elderly people into groups at varying risk of mortality.
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Doença Crônica/mortalidade , Idoso Fragilizado/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Assistência de Longa Duração/estatística & dados numéricos , Características de Residência , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Humanos , Estimativa de Kaplan-Meier , Masculino , Prognóstico , Estudos Retrospectivos , Fatores de Risco , Taxa de Sobrevida/tendências , Estados Unidos/epidemiologiaRESUMO
OBJECTIVES: To determine whether older people who do not have help for their activity of daily living (ADL) disabilities are at higher risk for acute care admissions and whether entry into a program that provides for these needs decreases this risk. DESIGN: A longitudinal cohort study. SETTING: Thirteen nationwide sites for the Program of All-inclusive Care for the Elderly (PACE). PACE provides comprehensive medical and long-term care to community-living older adults. PARTICIPANTS: Two thousand nine hundred forty-three PACE enrollees with one or more ADL dependencies. MEASUREMENTS: Unmet needs were defined as the absence of paid or unpaid assistance for ADL disabilities before PACE enrollment. Hospital admissions in the 6 months before PACE enrollment and acute admissions in the first 6 weeks and the 7th through 12th weeks after enrollment were determined. RESULTS: Those who lived with unmet ADL needs before enrollment were more likely to have a hospital admission before PACE enrollment (odds ratio (OR) = 1.28, 95% confidence interval (CI) = 1.01-1.63) and an acute admission in the first 6 weeks after enrollment (OR = 1.45, 95% CI = 1.00-2.09) but not after 6 weeks of receiving PACE services (OR = 0.86, 95% CI = 0.53-1.40). CONCLUSION: Frail older people who live without needed help for their ADL disabilities have higher rates of admissions while they are living with unmet ADL needs but not after their needs are met. With state governments under increasing pressure to develop fiscally feasible solutions for caring for disabled older people, it is important that they be aware of the potential health consequences of older adults living without needed ADL assistance.