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1.
J Am Geriatr Soc ; 72(1): 139-148, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37787414

RESUMO

BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.


Assuntos
Doença de Alzheimer , Disfunção Cognitiva , Humanos , Feminino , Masculino , Doença de Alzheimer/terapia , Doença de Alzheimer/complicações , Disfunção Cognitiva/complicações , Cuidadores , Etnicidade , Progressão da Doença
2.
J Am Geriatr Soc ; 68 Suppl 2: S62-S67, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32589275

RESUMO

Embedded pragmatic clinical trials (ePCTs) of nondrug interventions for Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) are conducted in real-world clinical settings and designed to generate an evidence base to inform clinical and policy decisions about care for this vulnerable population. The ePCTs exist within a complex ecosystem of relationships between researchers, payors, policymakers, healthcare systems, direct care staff, advocacy groups, families, caregivers, and people living with dementia (PLWD). Because the rapid increase of the number of Americans with AD/ADRD outpaces curative treatments, there is an urgent need to mobilize the power of these relationships to improve dementia care and address a mounting public health crisis. Stakeholder engagement in ePCTs is essential to generate research questions, establish the relevancy of trials to the intended end users, and understand the factors that influence dissemination and implementation in real-world clinical settings. The process of including stakeholders in ePCTs for dementia is similar to stakeholder engagement in ePCTs for other diseases and conditions; however, the unique nature of embedded research, prevalence of caregiver and provider burden, and the progressive worsening of cognitive impairment in PLWD must be approached with additional strategies. This article presents key considerations of stakeholder engagement for ePCTs in AD/ADRD and main activities of the stakeholder engagement team in the National Institute on Aging IMPACT Collaboratory to move the field forward. J Am Geriatr Soc 68:S62-S67, 2020.


Assuntos
Doença de Alzheimer/epidemiologia , Atenção à Saúde , Ensaios Clínicos Pragmáticos como Assunto , Projetos de Pesquisa , Participação dos Interessados , Cuidadores , Demência/epidemiologia , Humanos
3.
Value Health ; 23(5): 616-624, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32389227

RESUMO

OBJECTIVES: In a previous project aimed at informing patient-centered care for people with multiple chronic conditions, we performed highly stratified quantitative benefit-harm assessments for 2 top priority questions. In this current work, our goal was to describe the process and approaches we developed and to qualitatively glean important elements from it that address patient-centered care. METHODS: We engaged patients, caregivers, clinicians, and guideline developers as stakeholder representatives throughout the process of the quantitative benefit-harm assessment and investigated whether the benefit-harm balance differed based on patient preferences and characteristics (stratification). We refined strategies to select the most applicable, valid, and precise evidence. RESULTS: Two processes were important when assessing the balance of benefits and harms of interventions: (1) engaging stakeholders and (2) stratification by patient preferences and characteristics. Engaging patients and caregivers through focus groups, preference surveys, and as co-investigators provided value in prioritizing research questions, identifying relevant clinical outcomes, and clarifying the relative importance of these outcomes. Our strategies to select evidence for stratified benefit-harm assessments considered consistency across outcomes and subgroups. By quantitatively estimating the range in the benefit-harm balance resulting from true variation in preferences, we clarified whether the benefit-harm balance is preference sensitive. CONCLUSIONS: Our approaches for engaging patients and caregivers at all phases of the stratified quantitative benefit-harm assessments were feasible and revealed how sensitive the benefit-harm balance is to patient characteristics and individual preferences. Accordingly, this sensitivity can suggest to guideline developers when to tailor recommendations for specific patient subgroups or when to explicitly leave decision making to individual patients and their providers.


Assuntos
Participação do Paciente , Preferência do Paciente , Assistência Centrada no Paciente , Medição de Risco , Participação dos Interessados , Cuidadores , Grupos Focais , Humanos , Inquéritos e Questionários
5.
Am J Geriatr Psychiatry ; 28(4): 434-442, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31767451

RESUMO

OBJECTIVE: A stakeholder group for persons living with dementia (PLWD) was convened to support the work of a major US dementia research meeting. The objectives of this examination are to present the steps used to implement the Group and guidance for both PLWD and researchers for partnering on research conference planning and participation. METHODS: PLWD met monthly to provide input into the agenda for the 2017 Research Summit on Dementia Care and some Group members also presented at the Summit. Following the Summit, the Group reviewed their contributions and completed an evaluation of the Group process, identifying best practices to support future efforts. RESULTS: Group members were initially unsure about participating due to concerns about ability to contribute and concerns about disease progression. Members reported that participation was a positive experience, however, identifying Group-led governance and attention to Group work process as important contributors. In addition to giving input to the Summit and having the opportunity to interact with researchers, sharing personal experiences with each other was part of the value of the Group to members. Careful Group selection and attention to governance were among the Best Practices members. CONCLUSION: Despite initial uncertainty among members about participating as a Stakeholder Group to inform a national research meeting, members developed a successful process for governance, convening, and providing input to a major national research meeting. Group's self-evaluation yielded specific strategies likely to be useful in formation and implementation of future partnerships between researchers and persons living with dementia.


Assuntos
Pesquisa Biomédica , Cuidadores , Demência , Congressos como Assunto , Humanos , Participação dos Interessados , Estados Unidos
6.
Am J Geriatr Psychiatry ; 28(4): 421-430, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31784409

RESUMO

OBJECTIVE: Inclusion of patients in research activities has increased in the United States but no guidelines for inclusion of individuals with cognitive impairment exist. The experiences from the Persons Living with Dementia (PLWD) Stakeholder Group that formed to support the first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers provided a test of feasibility of this type of participation for a major research meeting and an opportunity to understand specific contributions of the Group. METHODS: The PLWD Stakeholder Group was formed by Summit co-chairs as one of six stakeholder groups charged with providing input into the Summit agenda and meeting recommendations. Members were recruited through clinician/researchers with personal knowledge of potential members. Following the Summit, Group members convened to review Group contributions to the Summit agenda, list of speakers, and Summit research recommendations. RESULTS: The PLWD Group influenced the content of the Summit agenda and some Group members were invited to contribute through Summit presentations. The Group influenced Summit outcomes: of the 58 research recommendations that emerged, 30 express ideas contributed by the PLWD. CONCLUSIONS: The Stakeholder Group for PLWD proved feasible to implement and impacted the agenda and output of a major national research meeting on dementia.


Assuntos
Pesquisa Biomédica , Cuidadores , Demência , Congressos como Assunto , Humanos , Participação dos Interessados , Estados Unidos
7.
Health Qual Life Outcomes ; 17(1): 186, 2019 Dec 19.
Artigo em Inglês | MEDLINE | ID: mdl-31856842

RESUMO

BACKGROUND: Older people with hypertension and multiple chronic conditions (MCC) receive complex treatments and face challenging trade-offs. Patients' preferences for different health outcomes can impact multiple treatment decisions. Since evidence about outcome preferences is especially scarce among people with MCC our aim was to elicit preferences of people with MCC for outcomes related to hypertension, and to determine how these outcomes should be weighed when benefits and harms are assessed for patient-centered clinical practice guidelines and health economic assessments. METHODS: We sent a best-worst scaling preference survey to a random sample identified from a primary care network of Kaiser Permanente (Colorado, USA). The sample included individuals age 60 or greater with hypertension and at least two other chronic conditions. We assessed average ranking of patient-important outcomes using conditional logit regression (stroke, heart attack, heart failure, dialysis, cognitive impairment, chronic kidney disease, acute kidney injury, fainting, injurious falls, low blood pressure with dizziness, treatment burden) and studied variation across individuals. RESULTS: Of 450 invited participants, 217 (48%) completed the survey, and we excluded 10 respondents who had more than two missing choices, resulting in a final sample of 207 respondents. Participants ranked stroke as the most worrisome outcome and treatment burden as the least worrisome outcome (conditional logit parameters: 3.19 (standard error 0.09) for stroke, 0 for treatment burden). None of the outcomes were always chosen as the most or least worrisome by more than 25% of respondents, indicating that all outcomes were somewhat worrisome to respondents. Predefined subgroup analyses according to age, self-reported life-expectancy, degree of comorbidity, number of medications and antihypertensive treatment did not reveal meaningful differences. CONCLUSIONS: Although some outcomes were more worrisome to patients than others, our results indicate that none of the outcomes should be disregarded for clinical practice guidelines and health economic assessments.


Assuntos
Tomada de Decisões , Hipertensão/psicologia , Múltiplas Afecções Crônicas/psicologia , Preferência do Paciente/psicologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Hipertensão/complicações , Masculino , Pessoa de Meia-Idade , Preferência do Paciente/economia , Qualidade de Vida , Inquéritos e Questionários
8.
BMJ Open ; 9(8): e028438, 2019 08 30.
Artigo em Inglês | MEDLINE | ID: mdl-31471435

RESUMO

OBJECTIVE: Recent studies suggest that a systolic blood pressure (SBP) target of 120 mm Hg is appropriate for people with hypertension, but this is debated particularly in people with multiple chronic conditions (MCC). We aimed to quantitatively determine whether benefits of a lower SBP target justify increased risks of harm in people with MCC, considering patient-valued outcomes and their relative importance. DESIGN: Highly stratified quantitative benefit-harm assessment based on various input data identified as the most valid and applicable from a systematic review of evidence and based on weights from a patient preference survey. SETTING: Outpatient care. PARTICIPANTS: Hypertensive patients, grouped by age, gender, prior history of stroke, chronic heart failure, chronic kidney disease and type 2 diabetes mellitus. INTERVENTIONS: SBP target of 120 versus 140 mm Hg for patients without history of stroke. PRIMARY AND SECONDARY OUTCOME MEASURES: Probability that the benefits of a SBP target of 120 mm Hg outweigh the harms compared with 140 mm Hg over 5 years (primary) with thresholds >0.6 (120 mm Hg better), <0.4 (140 mm Hg better) and 0.4 to 0.6 (unclear), number of prevented clinical events (secondary), calculated with the Gail/National Cancer Institute approach. RESULTS: Considering individual patient preferences had a substantial impact on the benefit-harm balance. With average preferences, 120 mm Hg was the better target compared with 140 mm Hg for many subgroups of patients without prior stroke, especially in patients over 75. For women below 65 with chronic kidney disease and without diabetes and prior stroke, 140 mm Hg was better. The analyses did not include mild adverse effects, and apply only to patients who tolerate antihypertensive treatment. CONCLUSIONS: For most patients, a lower SBP target was beneficial, but this depended also on individual preferences, implying individual decision-making is important. Our modelling allows for individualised treatment targets based on patient preferences, age, gender and co-morbidities.


Assuntos
Pressão Sanguínea , Hipertensão/mortalidade , Múltiplas Afecções Crônicas/mortalidade , Idoso , Idoso de 80 Anos ou mais , Anti-Hipertensivos/uso terapêutico , Feminino , Humanos , Hipertensão/tratamento farmacológico , Masculino , Pessoa de Meia-Idade , Valores de Referência , Medição de Risco
9.
J Clin Epidemiol ; 113: 92-100, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31059802

RESUMO

OBJECTIVES: The benefits and harms of diabetes treatments need to be carefully weighed in people with type II diabetes mellitus (DM) and multiple chronic conditions (MCCs). Our objective was to quantitatively assess the benefits and harms of the addition of basal insulin (insulin) vs. sulfonylurea (SU) to metformin in people with DM and MCCs. STUDY DESIGN AND SETTING: Data inputs into the benefit-harms analysis included (1) baseline risks of patient-centered outcomes (death, myocardial infarction, stroke, severe hypoglycemia, diarrhea, nausea) from cohorts and trials; (2) treatment effects for the addition of insulin vs. SU from a network meta-analysis; and (3) patient preference survey for outcome weights. Statistical analysis calculated the probability that adding insulin has greater benefits than harms, when compared with an SU, overall and by prespecified subgroups. RESULTS: Including the six outcomes, the probability of net benefit for insulin compared with SU was similar, across subgroups by age and diabetes duration (probability range, using conditional logit weights: 0.44-0.56). Adding patient preferences for treatment burden associated with insulin injections shifted the probability to favor SU over insulin (probability range, using conditional logit weights: 0.01-0.12). CONCLUSION: In people with DM and MCCs, we demonstrated incomplete evidence to conclude if basal insulin or SU should be added in people with DM and MCCs on metformin alone. The benefit-harm balance was sensitive to treatment preferences, that is., perceived treatment burden, indicating the importance of shared-decision making in caring for people with MCCs who are at high risk for experiencing harms associated with diabetes management.


Assuntos
Diabetes Mellitus Tipo 2/tratamento farmacológico , Hipoglicemiantes/uso terapêutico , Insulina/uso terapêutico , Metformina/uso terapêutico , Medição de Risco/métodos , Compostos de Sulfonilureia/uso terapêutico , Idoso , Idoso de 80 Anos ou mais , Quimioterapia Combinada , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Múltiplas Afecções Crônicas
10.
Innov Aging ; 2(2): igy025, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30480142

RESUMO

In December 2017, the National Academy of Neuropsychology convened an interorganizational Summit on Population Health Solutions for Assessing Cognitive Impairment in Geriatric Patients in Denver, Colorado. The Summit brought together representatives of a broad range of stakeholders invested in the care of older adults to focus on the topic of cognitive health and aging. Summit participants specifically examined questions of who should be screened for cognitive impairment and how they should be screened in medical settings. This is important in the context of an acute illness given that the presence of cognitive impairment can have significant implications for care and for the management of concomitant diseases as well as pose a major risk factor for dementia. Participants arrived at general principles to guide future screening approaches in medical populations and identified knowledge gaps to direct future research. Key learning points of the summit included: recognizing the importance of educating patients and healthcare providers about the value of assessing current and baseline cognition;emphasizing that any screening tool must be appropriately normalized and validated in the population in which it is used to obtain accurate information, including considerations of language, cultural factors, and education; andrecognizing the great potential, with appropriate caveats, of electronic health records to augment cognitive screening and tracking of changes in cognitive health over time.

11.
Clin Neuropsychol ; 32(7): 1193-1225, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30396329

RESUMO

In December 2017, the National Academy of Neuropsychology convened an interorganizational Summit on Population Health Solutions for Assessing Cognitive Impairment in Geriatric Patients in Denver, Colorado. The Summit brought together representatives of a broad range of stakeholders invested in the care of older adults to focus on the topic of cognitive health and aging. Summit participants specifically examined questions of who should be screened for cognitive impairment and how they should be screened in medical settings. This is important in the context of an acute illness given that the presence of cognitive impairment can have significant implications for care and for the management of concomitant diseases as well as pose a major risk factor for dementia. Participants arrived at general principles to guide future screening approaches in medical populations and identified knowledge gaps to direct future research. Key learning points of the summit included: recognizing the importance of educating patients and healthcare providers about the value of assessing current and baseline cognition; emphasizing that any screening tool must be appropriately normalized and validated in the population in which it is used to obtain accurate information, including considerations of language, cultural factors, and education; and recognizing the great potential, with appropriate caveats, of electronic health records to augment cognitive screening and tracking of changes in cognitive health over time.


Assuntos
Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/psicologia , Testes Neuropsicológicos , Saúde da População , Idoso , Idoso de 80 Anos ou mais , Disfunção Cognitiva/epidemiologia , Colorado , Congressos como Assunto/tendências , Atenção à Saúde/métodos , Demência/diagnóstico , Demência/epidemiologia , Demência/psicologia , Feminino , Humanos , Masculino
13.
Gerontologist ; 58(suppl_1): S20-S31, 2018 01 18.
Artigo em Inglês | MEDLINE | ID: mdl-29361070

RESUMO

In the United States, at least half of older adults living with dementia do not have a diagnosis. Their cognitive impairment may not have been detected, and some older adults whose physician recommends that they obtain a diagnostic evaluation do not follow through on the recommendation. Initiatives to increase detection of cognitive impairment and diagnosis of dementia have focused primarily on physician practices and public information programs to raise awareness about the importance of detection and diagnosis. Nonphysician care providers who work with older adults in community and residential care settings, such as aging network agencies, public health agencies, senior housing, assisted living, and nursing homes, interact frequently with older adults who have cognitive impairment but have not had a diagnostic evaluation. These care providers may be aware of signs of cognitive impairment and older adults' concerns about their cognition that have not been expressed to their physician. Within their scope of practice and training, nonphysician care providers can help to increase detection of cognitive impairment and encourage older adults with cognitive impairment to obtain a diagnostic evaluation to determine the cause of the condition. This article provides seven practice recommendations intended to increase involvement of nonphysician care providers in detecting cognitive impairment and encouraging older adults to obtain a diagnostic evaluation. The Kickstart-Assess-Evaluate-Refer (KAER) framework for physician practice in detection and diagnosis of dementia is used to identify ways to coordinate physician and nonphysician efforts and thereby increase the proportion of older adults living with dementia who have a diagnosis.


Assuntos
Disfunção Cognitiva/diagnóstico , Atenção à Saúde , Demência/diagnóstico , Pessoal de Saúde/classificação , Idoso , Atenção à Saúde/métodos , Atenção à Saúde/organização & administração , Demência/psicologia , Avaliação Geriátrica/métodos , Humanos
15.
J Gen Intern Med ; 32(8): 883-890, 2017 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-28349409

RESUMO

BACKGROUND: Having more than one chronic condition is common and is associated with greater health care utilization, higher medication burden and complexity of treatment. However, clinical practice guidelines (CPGs) do not routinely address the balance between harms and benefits of treatments for people with multiple chronic conditions (MCCs). OBJECTIVE: To partner with the Kaiser Permanente Integrated Cardiovascular Health (ICVH) program to engage multiple stakeholders in a mixed-methods approach in order to: 1) identify two high-priority clinical questions related to MCCs, and 2) understand patients' and family caregivers' perceptions of meaningful outcomes to inform benefit/harm assessments for these two high-priority questions. These clinical questions and outcomes will be used to inform CPG recommendations for people with MCCs. DESIGN AND PARTICIPANTS: The ICVH program provided 130 topics rank-ordered by the potential for finding evidence that would change clinical recommendations regarding the topic. We used a modified Delphi method to identify and reword topics into questions relevant to people with MCCs. We used two sets of focus groups (n = 27) to elicit patient and caregiver perspectives on two important research questions and relevant patient-important outcomes on benefit/harm balance for people with MCCs. KEY RESULTS: Co-investigators, patients and caregivers identified "optimal blood pressure goals" and "diabetes medication management" as important clinical topics for CPGs related to people with MCCs. Stakeholders identified a list of relevant outcomes to be addressed in future CPG development including 1) physical function and energy, 2) emotional health and well-being, 3) avoidance of treatment burden, side effects and risks, 4) interaction with providers and health care system, and 5) prevention of adverse long-term health outcomes. CONCLUSIONS: Through the application of a mixed-methods process, we identified the questions regarding optimal blood pressure goals and diabetes medication management, along with related patient-centered outcomes, to inform novel evidence syntheses for those with MCCs. This study provides the lessons learned and a generalizable process for CPG developers to engage patient and caregivers in priority-setting for the translation of evidence into future CPGs. Ultimately, engaging patient and stakeholders around MCCs could improve the relevance of CPGs for the care of people with MCCs.


Assuntos
Cuidadores/normas , Atenção à Saúde/normas , Grupos Focais , Fidelidade a Diretrizes/normas , Múltiplas Afecções Crônicas/terapia , Avaliação de Resultados da Assistência ao Paciente , Guias de Prática Clínica como Assunto , Análise Custo-Benefício , Técnica Delphi , Humanos , Múltiplas Afecções Crônicas/economia , Avaliação de Resultados em Cuidados de Saúde , Estados Unidos
16.
J Appl Gerontol ; 36(5): 570-591, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-26912728

RESUMO

This study describes engagement of veterans with dementia in an evidence-based care coordination intervention called Partners in Dementia Care (PDC). PDC uses a person-centered approach that encourages participation by individuals with dementia (IWDs), despite their cognitive impairment. PDC also targets primary family or friend caregivers, who often are the main user of the program. Of the total 316 IWDs, 202 passed a mental status screening and were considered to have engagement potential. The study of actual engagement was based on data from IWDs' PDC records, combined with data from structured research interviews. Approximately 80% of IWDs with engagement potential had a minimum level of actual engagement in PDC. A smaller subsample was more actively engaged, as indicated by assigned and/or accomplished action steps. Younger IWDs and those self-reporting more memory difficulties had higher levels of engagement. Results describe one example of the extent and limits of IWD engagement in psychosocial interventions.


Assuntos
Cuidadores/educação , Demência/terapia , Medicina Baseada em Evidências , Veteranos/educação , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Fatores Socioeconômicos , Estados Unidos , Veteranos/psicologia
17.
Alzheimers Dement (N Y) ; 1(1): 13-22, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29854922

RESUMO

INTRODUCTION: "Partners in Dementia Care" (PDC) tested a care-coordination program based on partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association chapters. The hypothesis posited PDC would reduce the likelihood and number of veterans' hospital admissions and emergency department (ED) visits, particularly for those with more cognitive impairment or behavioral symptoms. METHODS: The sample included 328 veterans with dementia and their primary family or friend caregivers from five matched sites (two randomly selected treatment sites). Data came from VA records; supplemented by caregiver research interviews. Regression analyses using the likelihood and number of hospital and ED visits as outcomes tested for overall treatment-comparison group differences and statistical interactions with cognitive impairment and behavioral symptoms. RESULTS: Consistent with the hypothesis, three significant interactions showed treatment-group veterans, with more cognitive impairment and behavioral symptoms, had fewer hospital admissions and ED visits than comparison-group veterans. There were no differences in the likelihood of hospital or ED use. DISCUSSION: PDC, a low-cost program for veterans and caregivers, was effective in reducing the number, but not the likelihood, of hospital admissions and ED visits. Reductions in service use were greater when caregivers reported more difficulties with veterans' symptoms, which in the absence of PDC would place veterans at risk of being high-volume, high-cost service users.Clinical Trial Registration: ClinicalTrials.gov: NCT00291161.

18.
Alzheimers Res Ther ; 6(1): 9, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24764496

RESUMO

INTRODUCTION: "Partners in Dementia Care" (PDC) tested the effectiveness of a care-coordination program integrating healthcare and community services and supporting veterans with dementia and their caregivers. Delivered via partnerships between Veterans Affairs medical centers and Alzheimer's Association chapters, PDC targeted both patients and caregivers, distinguishing it from many non-pharmacological interventions. Hypotheses posited PDC would improve five veteran self-reported outcomes: 1) unmet need, 2) embarrassment about memory problems, 3) isolation, 4) relationship strain and 5) depression. Greater impact was expected for more impaired veterans. A unique feature was self-reported research data collected from veterans with dementia. METHODS AND FINDINGS: Five matched communities were study sites. Two randomly selected sites received PDC for 12 months; comparison sites received usual care. Three structured telephone interviews were completed every 6 months with veterans who could participate. RESULTS: Of 508 consenting veterans, 333 (65.6%) completed baseline interviews. Among those who completed baseline interviews, 263 (79.0%) completed 6-month follow-ups and 194 (58.3%) completed 12-month follow-ups. Regression analyses showed PDC veterans had significantly less adverse outcomes than those receiving usual care, particularly for more impaired veterans after 6 months, including reduced relationship strain (B = -0.09; p = 0.05), depression (B = -0.10; p = 0.03), and unmet need (B = -0.28; p = 0.02; and B = -0.52; p = 0.08). PDC veterans also had less embarrassment about memory problems (B = -0.24; p = 0.08). At 12 months, more impaired veterans had further reductions in unmet need (B = -0.96; p < 0.01) and embarrassment (B = -0.05; p = 0.02). Limitations included use of matched comparison sites rather than within-site randomization and lack of consideration for variation within the PDC group in amounts and types of assistance provided. CONCLUSIONS: Partnerships between community and health organizations have the potential to meet the dementia-related needs and improve the psychosocial functioning of persons with dementia. TRIAL REGISTRY: NCT00291161.

19.
J Am Geriatr Soc ; 61(8): 1377-86, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23869899

RESUMO

The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act.


Assuntos
Doença de Alzheimer/psicologia , Doença de Alzheimer/terapia , Cuidadores/psicologia , Comportamento Cooperativo , Amigos/psicologia , Comunicação Interdisciplinar , Equipe de Assistência ao Paciente , Veteranos/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Serviços de Saúde Comunitária , Transtorno Depressivo/diagnóstico , Transtorno Depressivo/psicologia , Avaliação da Deficiência , Feminino , Necessidades e Demandas de Serviços de Saúde/organização & administração , Humanos , Masculino , Sistemas Computadorizados de Registros Médicos , Pessoa de Meia-Idade , Planejamento de Assistência ao Paciente/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Apoio Social , Resultado do Tratamento , Estados Unidos
20.
J Am Geriatr Soc ; 60(12): 2313-8, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23194066

RESUMO

Reducing preventable hospitalizations is fundamental to the "triple aim" of improving care, improving health, and reducing costs. New federal government initiatives that create strong pressure to reduce such hospitalizations are being or will soon be implemented. These initiatives use quality measures to define which hospitalizations are preventable. Reducing hospitalizations could greatly benefit frail and chronically ill adults and older people who receive long-term care (LTC) because they often experience negative effects of hospitalization, including hospital-acquired conditions, morbidity, and loss of functional abilities. Conversely, reducing hospitalizations could mean that some people will not receive hospital care they need, especially if the selected measures do not adequately define hospitalizations that can be prevented without jeopardizing the person's health and safety. An extensive literature search identified 250 measures of preventable hospitalizations, but the measures have not been validated in the LTC population and generally do not account for comorbidity or the capacity of various LTC settings to provide the required care without hospitalization. Additional efforts are needed to develop measures that accurately differentiate preventable from necessary hospitalizations for the LTC population, are transparent and fair to providers, and minimize the potential for gaming and unintended consequences. As the new initiatives take effect, it is critical to monitor their effect and to develop and disseminate training and resources to support the many community- and institution-based healthcare professionals and emergency department staff involved in decisions about hospitalization for this population.


Assuntos
Serviços de Saúde para Idosos , Hospitalização , Assistência de Longa Duração , Garantia da Qualidade dos Cuidados de Saúde , Idoso , Doença Crônica , Idoso Fragilizado , Mau Uso de Serviços de Saúde , Humanos , Readmissão do Paciente
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