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BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.
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Comparação Transcultural , Demência , Humanos , Idoso , Estudos Transversais , Projetos Piloto , Morte , Demência/terapiaRESUMO
BACKGROUND: There is a need to adopt evidence-based approaches to discharge planning in the skilled nursing facility (SNF) short stay population. PURPOSE: This article describes implementation of the Reengineered Discharge (RED) process in SNFs and makes recommendations for its future implementation. METHODS: The methods included a pre- and postanalysis of an 18-month RED implementation with a contemporaneous comparison of 4 Midwestern SNFs randomly assigned to 2 different RED implementation strategies. The Standard facilities received less implementation than Enhanced facilities. RESULTS: Standard SNFs made more improvements and were more satisfied with the improved process than Enhanced SNFs. Field notes revealed that corporate willingness to make process changes impacted the Standard group's capacity for change; both groups were heavily influenced by external forces, and turnover was an impediment to RED implementation. CONCLUSION: This research revealed that discharge processes are similar across settings and that evidence-based programs such as RED can be adapted to the SNF setting.
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Recursos Humanos de Enfermagem/estatística & dados numéricos , Planejamento de Assistência ao Paciente , Alta do Paciente/estatística & dados numéricos , Instituições de Cuidados Especializados de Enfermagem , Hospitalização , HumanosRESUMO
OBJECTIVE: To understand how patients' use of photo-elicitation and online social networks (Facebook) enhances their understanding of what it means to live with pain. DESIGN: Qualitative substudy of the intervention arm of a randomized trial. SETTING/SUBJECTS: Primary care patients living with pain drawn from nine family practices with at least two pain visits in the last six months. METHODS: The private Facebook group was co-facilitated by a moderator and a patient-investigator who lives with chronic pain. Patients were asked to share photos that elicit their lived experience with chronic pain, and facilitators guided participants in ongoing discussion about these photos, and thus the life with pain. Facebook discussions were analyzed via Dedoose (a qualitative analysis software) using thematic analysis. RESULTS: Discussions of photos elicited three overarching themes regarding patients' lived experience with chronic pain: 1) patients' redefined pain identity; 2) pain interference with enjoyment of life and activities; and 3) patients' diminished ability to function. CONCLUSIONS: Photo-elicitation is an innovative way to shed light on patients' lived experience with chronic pain. Despite some technical challenges, Facebook support groups utilizing photo-elicitation can provide a readily available platform that can facilitate interchange of patient experiences and might help patients communicate with their providers.
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Dor Crônica/psicologia , Acontecimentos que Mudam a Vida , Redes Sociais Online , Medição da Dor/psicologia , Estimulação Luminosa/métodos , Fotografação/métodos , Adulto , Idoso , Dor Crônica/diagnóstico , Dor Crônica/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Medição da Dor/métodosRESUMO
BACKGROUND: Peer support by persons affected with diabetes improves peer supporter's diabetes self-management skills. Peer support interventions by individuals who have diabetes or are affected by diabetes have been shown to improve glycemic control; however, its effects on other cardiovascular disease risk factors in adults with diabetes are unknown. We aimed to estimate the effect of peer support interventions on cardiovascular disease risk factors other than glycemic control in adults with diabetes. METHODS: We conducted a systematic review and meta-analysis of randomized controlled trials comparing peer support interventions to a control condition in adults affected by diabetes that measured any cardiovascular disease risk factors [Body Mass Index, smoking, diet, physical activity, cholesterol level, glucose control and blood pressure]. Quality was assessed by Cochrane's risk of bias tool. We calculated standardized mean difference effect sizes using random effects models. RESULTS: We retrieved 438 citations from multiple databases including OVID MEDLINE, Cochrane database and Scopus, and author searches. Of 233 abstracts reviewed, 16 articles met inclusion criteria. A random effects model in a total of 3243 participants showed a positive effect of peer support interventions on systolic BP with a pooled effect size of 2.07 mmHg (CI 0.35 mmHg to 3.79 mmHg, p = 0.02); baseline pooled systolic blood pressure was 137 mmHg. There was a non-significant effect of peer support interventions on diastolic blood pressure, cholesterol, body mass index, diet and physical activity. Cardiovascular disease risk factors other than glycemic control outcomes were secondary outcomes in most studies and baseline values were normal or mildly elevated. Only one study reported smoking outcomes. CONCLUSIONS: We found a small (2 mmHg) positive effect of peer support interventions on systolic blood pressure in adults with diabetes whose baseline blood pressure was on average minimally elevated. Additional studies need to be conducted to further understand the effect of peer support interventions on high-risk cardiovascular disease risk factors in adults with diabetes.
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Doenças Cardiovasculares/prevenção & controle , Diabetes Mellitus/terapia , Grupo Associado , Apoio Social , Adulto , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto , Fatores de Risco , Resultado do TratamentoRESUMO
BACKGROUND: Pneumonia in people with dementia has been associated with severe discomfort. We sought to assess the effectiveness of a practice guideline for optimal symptom relief for nursing home residents with dementia and pneumonia. METHODS: A single-blind, multicenter, cluster randomized controlled trial was conducted in 32 Dutch nursing homes. Outcomes were assessed on the patient level. The main outcome measures were discomfort and symptoms: discomfort (DS-DAT: Discomfort Scale-Dementia of Alzheimer Type), (lack of) comfort (EOLD-CAD: End Of Life in Dementia-Comfort Assessment in Dying), pain (PAINAD: Pain Assessment in Advanced Dementia), and respiratory distress (RDOS: Respiratory Distress Observation Scale). Outcomes were scheduled daily from diagnosis until 10 days later and a final time between 13-15 days from diagnosis by trained observers who were blinded to the intervention and the residents' condition and treatment. In a pre-intervention phase, usual care was provided to all homes. In the intervention phase, matched clusters of homes were randomized to either the control (n = 16) or intervention condition (n = 16). RESULTS: Between 1 January 2012 and 1 May 2015, 464 episodes of pneumonia were included. Outcomes were obtained for 399 episodes in 367 residents. Longitudinal multilevel linear regression analyses were performed on log-transformed outcomes, so coefficients should be interpreted as a ratio, and a coefficient of 1 means no difference. The practice guideline in the intervention phase did not reduce the level of discomfort and symptoms: DS-DAT: 1.11 (95 % CI 0.93-1.31), EOLD-CAD: 1.01 (95 % CI 0.98-1.05), PAINAD: 1.04 (95 % CI 0.93-1.15), RDOS: 1.11 (95 % CI 0.90-1.24). However, in both the intervention and control groups, lack of comfort and respiratory distress gradually decreased during the entire 3.5 years of data collection, and were lower in the intervention phase compared to the pre-intervention phase: DS-DAT: 0.93 (95 % CI 0.85-1.01), EOLD-CAD: 0.98 (95 % CI 0.97-1.00), PAINAD: 0.96 (95 % CI 0.91-1.01), RDOS: 0.92 (95 % CI 0.87-0.98). CONCLUSIONS: When compared to usual care, the practice guideline for optimal symptom relief did not relieve discomfort and symptoms in nursing home residents with dementia and pneumonia. However, discomfort and symptoms decreased gradually throughout the data collection in both the intervention homes and the control homes. An intervention that focuses on creating awareness may be more effective than a physician practice guideline. TRIAL REGISTRATION: The Netherlands National Trial Register (ID number NTR5071 . Registered 10 March 2015).
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Demência/terapia , Conforto do Paciente/métodos , Pneumonia/terapia , Guias de Prática Clínica como Assunto , Idoso , Idoso de 80 Anos ou mais , Demência/epidemiologia , Demência/psicologia , Dispneia/epidemiologia , Dispneia/psicologia , Dispneia/terapia , Emoções , Feminino , Humanos , Masculino , Países Baixos/epidemiologia , Casas de Saúde/tendências , Pneumonia/epidemiologia , Pneumonia/psicologia , Guias de Prática Clínica como Assunto/normas , Método Simples-CegoRESUMO
PURPOSE: Peer support intervention trials have shown varying effects on glycemic control. We aimed to estimate the effect of peer support interventions delivered by people affected by diabetes (those with the disease or a caregiver) on hemoglobin A1c (HbA1c) levels in adults. METHODS: We searched multiple databases from 1960 to November 2015, including Ovid MEDLINE, the Cochrane Central Register of Controlled Trials, CINAHL, and Scopus. We included randomized controlled trials (RCTs) of adults with diabetes receiving peer support interventions compared with otherwise similar care. Seventeen of 205 retrieved studies were eligible for inclusion. Quality was assessed with the Cochrane risk of bias tool. We calculated the standardized mean difference (SMD) of change in HbA1c level from baseline between groups using a random effects model. Subgroup analyses were predefined. RESULTS: Seventeen studies (3 cluster RCTs, 14 RCTs) with 4,715 participants showed an improvement in pooled HbA1c level with an SMD of 0.121 (95% CI, 0.026-0.217; P = .01; I2 = 60.66%) in the peer support intervention group compared with the control group; this difference translated to an improvement in HbA1c level of 0.24% (95% CI, 0.05%-0.43%). Peer support interventions showed an HbA1c improvement of 0.48% (95% CI, 0.25%-0.70%; P <.001; I2 = 17.12%) in the subset of studies with predominantly Hispanic participants and 0.53% (95% CI, 0.32%-0.73%; P <.001; I2 = 9.24%) in the subset of studies with predominantly minority participants; both were clinically relevant. In sensitivity analysis excluding cluster RCTs, the overall effect size changed little. CONCLUSIONS: Peer support interventions for diabetes overall achieved a statistically significant but minor improvement in HbA1c levels. These interventions may, however, be particularly effective in improving glycemic control for people from minority groups, especially those of Hispanic ethnicity.
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Diabetes Mellitus/terapia , Hemoglobinas Glicadas/análise , Grupo Associado , Apoio Social , Adulto , Aconselhamento , Diabetes Mellitus/sangue , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Grupos Minoritários , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVE: This study aimed to develop a practice guideline for a structured and consensus-based approach to relieve symptoms of pneumonia in patients with dementia in nursing homes. METHODS: A five-round Delphi study involving a panel consisting of 24 experts was conducted. An initial version of the practice guideline was developed with leading representatives of Dutch University Medical Centers with a department for elderly care medicine, based on existing guidelines for palliative care. The experts evaluated the initial version, after which we identified topics that reflected the main divergences. The experts rated their agreement with statements that addressed the main divergences on a 5-point Likert scale. Consensus was determined according to pre-defined criteria. The practice guideline was then revised according to the final decisions made by the project group and the representatives. RESULTS: The response rate for the expert panel was 67%. Main divergences included the applicability of guidelines for palliative care to patients with dementia and pneumonia in long-term care and the appropriateness of specific pharmacological treatment of dyspnea and coughing. Moderate consensus was reached for 80% of the statements. Major revisions included adding pharmacological treatment for coughing and recommending opioid rotation in the case of opioid-induced delirium. Two areas of divergent opinion remained: the usefulness of oxygen administration and treatment of rattling breath. The project group made the final decision in these areas. CONCLUSIONS: We developed a mostly consensus-based practice guideline for patients with dementia and pneumonia and mapped controversial issues for future investigation.
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Demência , Casas de Saúde , Pneumonia/terapia , Idoso , Comorbidade , Consenso , Tosse/terapia , Técnica Delphi , Dispneia/terapia , Feminino , Humanos , Masculino , Cuidados Paliativos/métodos , Guias de Prática Clínica como AssuntoRESUMO
BACKGROUND: Technology-based aids for lifestyle change are becoming more prevalent for chronic conditions. Important "digital divides" remain, as well as concerns about privacy, data security, and lack of motivation. Researchers need a way to characterize participants' readiness to use health technologies. To address this need, we created an instrument to measure patient readiness to engage with health technologies among adult patients with chronic conditions. METHODS: Initial focus groups to determine domains, followed by item development and refinement, and exploratory factor analysis to determine final items and factor structure. The development sample included 200 patients with chronic conditions from 6 family medicine clinics. From 98 potential items, 53 best candidate items were examined using exploratory factor analysis. Pearson's Correlation for Test/Retest reliability at 3 months. RESULTS: The final instrument had 28 items that sorted into 8 factors with associated Cronbach's alpha: 1) Health Information Need (0.84), 2) Computer/Internet Experience (0.87), 3) Computer Anxiety (0.82), 4) Preferred Mode of Interaction (0.73), 5) Relationship with Doctor (0.65), 6) Cell Phone Expertise (0.75), 7) Internet Privacy (0.71), and 8) No News is Good News (0.57). Test-retest reliability for the 8 subscales ranged from (0.60 to 0.85). CONCLUSION: The Patient Readiness to Engage in Health Internet Technology (PRE-HIT) instrument has good psychometric properties and will be an aid to researchers investigating technology-based health interventions. Future work will examine predictive validity.
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Letramento em Saúde , Internet , Informática Médica , Participação do Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Prior telemonitoring trials of blood pressure and blood glucose have shown improvements in blood pressure and glycemic targets. However, implementation of telemonitoring in primary care practices may not yield the same results as research trials with extra resources and rigid protocols. In this study we examined the process of implementing home telemonitoring of blood glucose and blood pressure for patients with diabetes in six primary care practices. MATERIALS AND METHODS: Grounded theory qualitative analysis was conducted in parallel with a randomized controlled effectiveness trial of home telemonitoring. Data included semistructured interviews with 6 nurse care coordinators and 12 physicians in six participating practices and field notes from exit interviews with 93 of 108 randomized patients. RESULTS: The three stakeholder groups (patients, nurse care coordinators, and physicians) exhibited some shared themes and some unique to the particular stakeholder group. Major themes were that practices should (1) understand the capabilities and limitations of the technology and the willingness of patient and physician stakeholders to use it, (2) understand the workflow, flow of information, and human factors needed to optimize use of the technology, (3) engage and prepare the physicians, and (4) involve the patient in the process. Although there was enthusiasm for a patient-centered medical home model that included between-visit telemonitoring, there was concern about the support and resources needed to provide this service to patients. CONCLUSIONS: As with many technology interventions, careful consideration of workflow and information flow will help enable effective implementations.
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Glicemia/análise , Determinação da Pressão Arterial , Diabetes Mellitus/fisiopatologia , Serviços de Assistência Domiciliar , Monitorização Fisiológica/métodos , Atenção Primária à Saúde , Telemetria , Diabetes Mellitus/terapia , Humanos , Participação do Paciente , Assistência Centrada no Paciente , Pesquisa Qualitativa , TelemedicinaRESUMO
OBJECTIVE: Patient self-management support may be augmented by using home-based technologies that generate data points that providers can potentially use to make more timely changes in the patients' care. The purpose of this study was to evaluate the effectiveness of short-term targeted use of remote data transmission on treatment outcomes in patients with diabetes who had either out-of-range hemoglobin A1c (A1c) and/or blood pressure (BP) measurements. MATERIALS AND METHODS: A single-center randomized controlled clinical trial design compared in-home monitoring (n=55) and usual care (n=53) in patients with type 2 diabetes and hypertension being treated in primary care clinics. Primary outcomes were A1c and systolic BP after a 12-week intervention. RESULTS: There were no significant differences between the intervention and control groups on either A1c or systolic BP following the intervention. CONCLUSIONS: The addition of technology alone is unlikely to lead to improvements in outcomes. Practices need to be selective in their use of telemonitoring with patients, limiting it to patients who have motivation or a significant change in care, such as starting insulin. Attention to the need for effective and responsive clinic processes to optimize the use of the additional data is also important when implementing these types of technology.
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Glicemia/análise , Pressão Sanguínea , Diabetes Mellitus/terapia , Serviços de Assistência Domiciliar , Monitorização Fisiológica/métodos , Atenção Primária à Saúde , Telemedicina , Adulto , Idoso , Idoso de 80 Anos ou mais , Diabetes Mellitus/sangue , Diabetes Mellitus/fisiopatologia , Feminino , Hemoglobinas Glicadas/análise , Humanos , Masculino , Pessoa de Meia-Idade , Autocuidado/métodosRESUMO
BACKGROUND: Physician transfer is an alternate option to patient transfer for expedient performance of mechanical thrombectomy in patients with acute ischemic stroke. METHODS AND RESULTS: We conducted a systematic review to identify studies that evaluate the effect of physician transfer in patients with acute ischemic stroke who undergo mechanical thrombectomy. A search of PubMed, Scopus, and Web of Science was undertaken, and data were extracted. A statistical pooling with random-effects meta-analysis was performed to examine the odds of reduced time interval between stroke onset and recanalization, functional independence, death, and angiographic recanalization. A total of 12 studies (11 nonrandomized observational studies and 1 nonrandomized controlled trial) were included, with a total of 1894 patients. Physician transfer was associated with a significantly shorter time interval between stroke onset and recanalization with a pooled mean difference estimate of -62.08 (95% CI, -112.56 to -11.61]; P=0.016; 8 studies involving 1419 patients) with high between-study heterogeneity in the estimates (I2=90.6%). The odds for functional independence at 90 days were significantly higher (odds ratio, 1.29 [95% CI, 1.00-1.66]; P=0.046; 7 studies with 1222 patients) with physician transfer with low between-study heterogeneity (I2=0%). Physician transfer was not associated with higher odds of near-complete or complete angiographic recanalization (odds ratio, 1.18 [95% CI, 0.89-1.57; P=0.25; I2=2.8%; 11 studies with 1856 subjects). CONCLUSIONS: Physician transfer was associated with a significant reduction in the mean of time interval between symptom onset and recanalization and increased odds for functional independence at 90 days with physician transfer compared with patient transfer among patients who undergo mechanical thrombectomy.
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AVC Isquêmico , Transferência de Pacientes , Trombectomia , Tempo para o Tratamento , Humanos , AVC Isquêmico/terapia , AVC Isquêmico/cirurgia , Trombectomia/métodos , Fatores de Tempo , Resultado do TratamentoRESUMO
Background: Evidence suggests the usefulness of complementary and alternative medicine approaches, like neurofeedback and virtual reality, for the management of cancer-related pain and mood. It is not well-understood whether neurofeedback delivered through virtual reality is feasible and acceptable to patients actively undergoing cancer treatment. Objective: The purpose of this study was to explore the feasibility and acceptability of a nature-based virtual reality combined with neurofeedback as a non-pharmacologic strategy for managing cancer-related pain and anxiety. Methods: This study utilized a mixed-methods approach. Participants included 15 cancer patients undergoing treatment. Patients engaged in a 22-minute nature-based virtual reality experience, wearing a virtual reality headset with a Brainlink headband measuring EEG activity. Participants were asked to complete the Edmonton Symptom Assessment System revised version (ESAS-r) before (T1) and after (T3) the experience to measure pain and anxiety. They were asked their level of pain midway through the experience (T2) and completed a follow-up interview afterward. Results: This study revealed feasible delivery of a virtual reality intervention combined with neurofeedback for patients seeking cancer treatment. All participants (100%) completed the intervention experience. Patients report this is an acceptable approach to managing cancer-related pain and anxiety. Comparisons between patients' pain scores at T1, T2, and T3 reveal statistically significant reductions in pain (p .001). Patients also report decreased depression and anxiety. Conclusion: This is the first study examining virtual reality combined with neurofeedback as a non-pharmacologic intervention for managing cancer symptoms during treatment. The study reveals it is a promising for managing cancer-symptoms.
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Dor do Câncer , Neoplasias , Neurorretroalimentação , Realidade Virtual , Humanos , Neurorretroalimentação/métodos , Estudos de Viabilidade , Dor , Ansiedade/etiologia , Ansiedade/terapia , Neoplasias/complicações , Neoplasias/terapiaRESUMO
OBJECTIVE: To determine if clustering methods can use a holistic assessment of health-related quality-of-life after bladder cancer diagnosis to predict survival outcomes independent of clinical characteristics. In the United States, an estimated 81,180 cases of bladder cancer will be diagnosed in 2022. We aim to help address the knowledge gap concerning the impact of patient functional status on outcomes. MATERIALS AND METHODS: This is a cross-sectional, retrospective cohort study of patients in the End Results-Medicare Health Outcomes Survey Registry. Age and 36-Item Short Form Survey (SF-36) responses were used as K-means inputs to identify homogenous clusters of older patients with bladder cancer. We analyzed the association between the identified clusters, patient and disease characteristics, and outcomes. We used Cox proportional hazard regression to compare overall survival. RESULTS: We identified 5 homogenous clusters that exhibited differences in patient characteristics and survival. There was no significant difference in cancer stage or surgery type among the clusters. The Cox proportional hazard regression demonstrated significant associations of cluster with gender, age, education, marital status, smoking status, type of surgery, and cancer stage on overall survival. Cluster independently predicted overall survival. CONCLUSION: Using unsupervised machine learning, we identified clusters of patients with bladder cancer who had similar mental and physical function scores. Cluster grouping suggests that patients' mental and physical function may not be based on disease or treatment. There are significant survival differences between all clusters, demonstrating that a holistic assessment of patient-reported health-related quality-of-life has the potential to predict survival and possible modifiable risk factors in older patients with bladder cancer.
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Qualidade de Vida , Neoplasias da Bexiga Urinária , Humanos , Estados Unidos/epidemiologia , Idoso , Adulto , Estudos Retrospectivos , Estudos Transversais , Medicare , Neoplasias da Bexiga Urinária/cirurgiaRESUMO
Complex articular cartilage loss in the knee is being diagnosed more frequently and earlier in life, and patients are faced with major decisions regarding invasive surgical interventions at increasingly younger ages. There is a critical unmet need to provide patient-centered comparative effectiveness research for the hundreds of thousands of patients faced with these treatment decisions each year. Toward filling the need, we developed the Patient AdvisoR Team iN Orthopaedic ReSearch (PARTNORS) program. We recruited a diverse group of patients and caregivers with lived experiences in dealing with complex knee problems to define patient-centered research priorities for comparative biological and artificial knee surgery research for middle-aged adults. Adapting the Stakeholder Engagement in Question Development and Prioritization Method, PARTNORS defined a 20-question list of patient-centered research questions of factors influencing a patients' choice between biological and artificial knee surgeries. The highest prioritized research question related to functional level postsurgery as it relates to daily activities and recreational activities. The second highest prioritized research questions related to insurance coverage and financial costs. Other prioritized research areas included caregiving needs, implant longevity, recovery and rehabilitation time, patient satisfaction and success rates, individual characteristics, and risks. By engaging a group of patients and caregivers and including them as members of a multidisciplinary research team, comparative effectiveness research that includes patient-centered factors that go beyond typical clinical success indicators for knee surgery can be designed to allow physicians and patients to work together toward evidence-based shared decisions. This shared decision-making process helps to align patients' and health care team's goals and expectations to improve outcomes.
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Cuidadores , Pesquisa Comparativa da Efetividade , Adulto , Pessoa de Meia-Idade , Humanos , Satisfação do Paciente , Pacientes , Assistência Centrada no PacienteRESUMO
BACKGROUND: Reducing avoidable nursing home (NH)-to-hospital transfers of residents with Alzheimer disease or a related dementia (ADRD) has become a national priority due to the physical and emotional toll it places on residents and the high costs to Medicare and Medicaid. Technologies supporting the use of clinical text messages (TMs) could improve communication among health care team members and have considerable impact on reducing avoidable NH-to-hospital transfers. Although text messaging is a widely accepted mechanism of communication, clinical models of care using TMs are sparsely reported in the literature, especially in NHs. Protocols for assessing technologies that integrate TMs into care delivery models would be beneficial for end users of these systems. Without evidence to support clinical models of care using TMs, users are left to design their own methods and protocols for their use, which can create wide variability and potentially increase disparities in resident outcomes. OBJECTIVE: Our aim is to describe the protocol of a study designed to understand how members of the multidisciplinary team communicate using TMs and how salient and timely communication can be used to avert poor outcomes for NH residents with ADRD, including hospitalization. METHODS: This project is a secondary analysis of data collected from a Centers for Medicare & Medicaid Services (CMS)-funded demonstration project designed to reduce avoidable hospitalizations for long-stay NH residents. We will use two data sources: (1) TMs exchanged among the multidisciplinary team across the 7-year CMS study period (August 2013-September 2020) and (2) an adapted acute care transfer tool completed by advanced practice registered nurses to document retrospective details about NH-to-hospital transfers. The study is guided by an age-friendly model of care called the 4Ms (What Matters, Medications, Mentation, and Mobility) framework. We will use natural language processing, statistical methods, and social network analysis to generate a new ontology and to compare communication patterns found in TMs occurring around the time NH-to-hospital transfer decisions were made about residents with and without ADRD. RESULTS: After accounting for inclusion and exclusion criteria, we will analyze over 30,000 TMs pertaining to over 3600 NH-to-hospital transfers. Development of the 4M ontology is in progress, and the 3-year project is expected to run until mid-2025. CONCLUSIONS: To our knowledge, this project will be the first to explore the content of TMs exchanged among a multidisciplinary team of care providers as they make decisions about NH-to-hospital resident transfers. Understanding how the presence of evidence-based elements of high-quality care relate to avoidable hospitalizations among NH residents with ADRD will generate knowledge regarding the future scalability of behavioral interventions. Without this knowledge, NHs will continue to rely on ineffective and outdated communication methods that fail to account for evidence-based elements of age-friendly care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50231.
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BACKGROUND: A large number of individual potentially modifiable factors are associated with risk for Alzheimer's disease (AD). However, less is known about the interactions between the individual factors. METHODS: In order to begin to examine the relationship between a pair of factors, we performed a pilot study, surveying patients with AD and controls for stress exposure and dietary omega-3 fatty acid intake to explore their relationship for risk of AD. RESULTS: For individuals with the greatest stress exposure, omega-3 fatty acid intake was significantly greater in healthy controls than in AD patients. There was no difference among those with low stress exposure. CONCLUSIONS: These initial results begin to suggest that omega-3 fatty acids may mitigate AD risk in the setting of greater stress exposure. This will need to be examined with larger populations and other pairs of risk factors to better understand these important relationships. Examining how individual risk factors interact will ultimately be important for learning how to optimally decrease the risk of AD.
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Doença de Alzheimer , Ácidos Graxos Ômega-3 , Fármacos Neuroprotetores , Humanos , Doença de Alzheimer/prevenção & controle , Doença de Alzheimer/complicações , Fármacos Neuroprotetores/farmacologia , Fármacos Neuroprotetores/uso terapêutico , Projetos Piloto , Ácidos Graxos Ômega-3/farmacologia , Dieta , Ácidos GraxosRESUMO
Objective: To describe key stakeholders' perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS). Methods: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques. Results: Stakeholders' general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care's definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting. Conclusion: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.
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Esclerose Lateral Amiotrófica , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Esclerose Lateral Amiotrófica/terapia , Cuidadores , Pessoal de Saúde , Humanos , Cuidados Paliativos/métodos , Pesquisa QualitativaRESUMO
PURPOSE: Patients have responded in variable ways to pain science education about the psychosocial correlates of pain. To improve the effectiveness of pain education approaches, this study qualitatively explored participants' perceptions of and responses to pain science education. METHODS: We conducted a qualitative content analysis of interviews with fifteen, adult patients (73.3% female) who had recently attended a first visit to a chronic pain clinic and watched a pain science educational video. RESULTS: Participants thought it was important to improve their and healthcare providers' understanding of their pain. They viewed the video favorably, learned information from it, and thought it could feasibly facilitate communication with their healthcare providers, but, for many participants, the video either did not answer their questions and/or raised more questions. Participants' responses to the video included negative and positive emotions and were influenced by their need for confirmation that their pain was real and personal relevance of the pain science content. CONCLUSION: Study results support the feasibility and value of delivering pain science education via video and increase our understanding of patients' perceptions of and responses to pain science education. The video's triggering of emotional responses warrants additional research.
Assuntos
Dor Crônica , Adulto , Humanos , Feminino , Masculino , Dor Crônica/diagnóstico , Dor Crônica/psicologia , Pessoal de Saúde , Emoções , ComunicaçãoRESUMO
Background: Identifying individual and neighborhood-level factors associated with worsening cardiometabolic risks despite clinic-based care coordination may help identify candidates for supplementary team-based care. Methods: Secondary data analysis of data from a two-year nurse-led care coordination program cohort of Medicare, Medicaid, dual-eligible adults, Leveraging Information Technology to Guide High Tech, High Touch Care (LIGHT2), from ten Midwestern primary care clinics in the U.S. Outcome Measures: Hemoglobin A1C, low-density-lipoprotein (LDL) cholesterol, and blood pressure. Multivariable generalized linear regression models assessed individual and neighborhood-level factors associated with changes in outcome measures from before to after completion of the LIGHT2 program. Results: 6378 participants had pre-and post-intervention levels reported for at least one outcome measure. In adjusted models, higher pre-intervention cardiometabolic measures were associated with worsening of all cardiometabolic measures. Women had worsening LDL-cholesterol compared with men. Women with pre-intervention HbA1c > 6.8% and systolic blood pressure > 131 mm of Hg had worse post-intervention HbA1c and systolic blood pressure compared with men. Adding individual's neighborhood-level risks did not change effect sizes significantly. Conclusions: Increased cardiometabolic risks and gender were associated with worsening cardiometabolic outcomes. Understanding unresolved gender-specific needs and preferences of patients with increased cardiometabolic risks may aid in tailoring clinic-community-linked care planning.
RESUMO
OBJECTIVES: We conducted a meta-analysis summarizing the effects of interventions designed to increase physical activity among healthy adults. METHODS: Our comprehensive searches located 358 reports eligible for inclusion. We used random-effects analyses to synthesize data, and we used meta-analytic analogues of regression and analysis of variance to examine potential moderator variables. We also explored moderator variable robustness and publication bias. RESULTS: We computed meta-analytic results from studies comprising 99 011 participants. The overall mean effect size for comparisons of treatment groups versus control groups was 0.19 (higher mean for treatment participants than for control participants). This effect size is consistent with a mean difference of 496 ambulatory steps per day between treatment and control participants. Exploratory moderator analyses suggested that the characteristics of the most effective interventions were behavioral interventions instead of cognitive interventions, face-to-face delivery versus mediated interventions (e.g., via telephone or mail), and targeting individuals instead of communities. Participant characteristics were unrelated to physical activity effect sizes. Substantial between-studies heterogeneity remained beyond individual moderators. CONCLUSIONS: Interventions designed to increase physical activity were modestly effective. Interventions to increase activity should emphasize behavioral strategies over cognitive strategies.