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1.
J Gen Intern Med ; 38(1): 115-121, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-35581456

RESUMO

BACKGROUND: The end-of-life (EOL) experience in the intensive care unit (ICU) is emotionally challenging, and there are opportunities for improvement. The 3 Wishes Program (3WP) promotes the dignity of dying patients and their families by eliciting and implementing wishes at the EOL. AIM: To assess whether the 3WP is associated with improved ratings of EOL care. PROGRAM DESCRIPTION: In the 3WP, clinicians elicit and fulfill simple wishes for dying patients and their families. SETTING: 2-hospital academic healthcare system. PARTICIPANTS: Dying patients in the ICU and their families. PROGRAM EVALUATION: A modified Bereaved Family Survey (BFS), a validated tool for measuring EOL care quality, was completed by families of ICU decedents approximately 3 months after death. We compared patients whose care involved the 3WP to those who did not using three BFS-derived measures: Respectful Care and Communication (5 questions), Emotional and Spiritual Support (3 questions), and the BFS-Performance Measure (BFS-PM, a single-item global measure of care). RESULTS: Of 314 completed surveys, 117 were for patients whose care included the 3WP. Bereaved families of 3WP patients rated the Emotional and Spiritual Support factor significantly higher (7.5 vs. 6.0, p = 0.003, adjusted p = 0.001) than those who did not receive the 3WP. The Respectful Care and Communication factor and BFS-PM were no different between groups. DISCUSSION: The 3WP is a low-cost intervention that may be a feasible strategy for improving the EOL experience.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Assistência Terminal/psicologia , Espiritualidade , Emoções , Morte , Família/psicologia
2.
J Gen Intern Med ; 38(16): 3535-3540, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37620715

RESUMO

BACKGROUND: Physician Orders for Life Sustaining Treatment (POLST) document instructions for intensity of care based upon patient care preferences. POLST forms generally reflect patients' wishes and dictate subsequent medical care, but it is not known how POLST use and content among nursing home residents is associated with inpatient utilization across a large population. OBJECTIVE: Evaluate the relationship between POLST use and content with hospital utilization among nursing home residents in California. DESIGN: Retrospective cohort study using the Minimum Data Set linked to California Section S (POLST documentation), the Medicare Beneficiary Summary File, and Medicare line item claims. PATIENTS: California nursing home residents with Medicare fee-for-service insurance, 2011-2016. MAIN MEASURES: Hospitalization, days in the hospital, and days in the intensive care unit (ICU) after adjustment for resident and nursing home characteristics. KEY RESULTS: The 1,112,834 residents had a completed and signed (valid) POLST containing orders for CPR with Full treatment 29.6% of resident-time (in person-years) and a DNR order with Selective treatment or Comfort care 27.1% of resident-time. Unsigned POLSTs accounted for 11.3% of resident-time. Residents experienced 14 hospitalizations and a mean of 120 hospital days and 37 ICU days per 100 person-years. Residents with a POLST indicating CPR Full treatment had utilization nearly identical to residents without a POLST. A gradient of decreased utilization was related to lower intensity of care orders. Compared to residents without a POLST, residents with a POLST indicating DNR Comfort care spent 56 fewer days in the hospital and 22 fewer days in the ICU per 100 person-years. Unsigned POLST had a weaker and less consistent relationship with hospital utilization. CONCLUSIONS: Among California NH residents, there is a direct relationship between intensity of care preferences in POLST and hospital utilization. These findings emphasize the importance of a valid POLST capturing informed preferences for nursing home residents.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Idoso , Estados Unidos/epidemiologia , Humanos , Diretivas Antecipadas , Estudos Retrospectivos , Medicare , Ordens quanto à Conduta (Ética Médica) , Hospitalização , Casas de Saúde , Unidades de Terapia Intensiva , California/epidemiologia
3.
J Gen Intern Med ; 38(8): 1848-1853, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36717432

RESUMO

BACKGROUND: Patients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals. OBJECTIVE: To assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California. DESIGN: Retrospective cohort study PATIENTS: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone. MAIN MEASURES: Effect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)). RESULTS: Across the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively). CONCLUSIONS: Phone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients.


Assuntos
Planejamento Antecipado de Cuidados , Etnicidade , Humanos , Estudos Retrospectivos , Grupos Minoritários , Inquéritos e Questionários , Telefone
4.
Ann Surg ; 275(1): 196-202, 2022 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-32502076

RESUMO

OBJECTIVE: Develop quality indicators that measure access to and the quality of primary PC delivered to seriously ill surgical patients. SUMMARY OF BACKGROUND DATA: PC for seriously ill surgical patients, including aligning treatments with patients' goals and managing symptoms, is associated with improved patient-oriented outcomes and decreased healthcare utilization. However, efforts to integrate PC alongside restorative surgical care are limited by a lack of surgical quality indicators to evaluate primary PC delivery. METHODS: We developed a set of 27 preliminary indicators that measured palliative processes of care across the surgical episode, including goals of care, decision-making, symptom assessment, and issues related to palliative surgery. Then using the RAND-UCLA Appropriateness method, a 12-member expert advisory panel rated the validity (primary outcome) and feasibility of each indicator twice: (1) remotely and (2) after an in-person moderated discussion. RESULTS: After 2 rounds of rating, 24 indicators were rated as valid, covering the preoperative evaluation (9 indicators), immediate preoperative readiness (2 indicators), intraoperative (1 indicator), postoperative (8 indicators), and end of life (4 indicators) phases of surgical care. CONCLUSIONS: This set of quality indicators provides a comprehensive set of process measures that possess the potential to measure high quality PC for seriously ill surgical patients throughout the surgical episode.


Assuntos
Cuidados Críticos , Cuidados Paliativos/normas , Assistência Perioperatória/normas , Indicadores de Qualidade em Assistência à Saúde , Humanos
5.
J Gen Intern Med ; 37(6): 1450-1456, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35013931

RESUMO

BACKGROUND: COVID-19 restrictions and fear dramatically changed the use of medical care. Understanding the magnitude of cancelled and postponed appointments and associated factors can help identify approaches to mitigate unmet need. OBJECTIVE: To determine the proportion of medical visits cancelled or postponed and for whom. We hypothesized that adults with serious medical conditions and those with higher anxiety, depressive symptoms, and avoidance-oriented coping would have more cancellations/postponements. DESIGN: Four nationally representative cross-sectional surveys conducted online in May, July, October, and December 2020. PARTICIPANTS: 59,747 US adults who completed 15-min online surveys. 69% cooperation rate. MEASURES: Physical and mental health visits and cancer screening cancelled or postponed over prior 2 months. Plan to cancel or postpone visits over the next 2 months. Relationship with demographics, medical conditions, local COVID-19 death rate, anxiety, depressive symptoms, coping, intolerance of uncertainty, and perceived COVID-19 risk. KEY RESULTS: Of the 58% (N = 34,868) with a medical appointment during the 2 months before the survey, 64% had an appointment cancelled or postponed in May, decreasing to 37% in December. Of the 41% of respondents with scheduled cancer screening, 20% cancelled/postponed, which was stable May to December. People with more medical conditions were more likely to cancel or postpone medical visits (OR 1.19 per condition, 95% CI 1.16, 1.22) and cancer screening (OR 1.20, 95% CI 1.15, 1.24). Race, ethnicity, and income had weak associations with cancelled/postponed visits, local death rate was unrelated, but anxiety and depressive symptoms were strongly related to cancellations, and this grew between May and December. CONCLUSIONS: Cancelled medical care and cancer screening were more common among persons with medical conditions, anxiety and depression, even after accounting for COVID-19 deaths. Outreach and support to ensure that patients are not avoiding needed care due to anxiety, depression and inaccurate perceptions of risk will be important.


Assuntos
COVID-19 , Neoplasias , Adulto , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Ansiedade/psicologia , COVID-19/diagnóstico , COVID-19/epidemiologia , Estudos Transversais , Depressão/diagnóstico , Depressão/epidemiologia , Depressão/psicologia , Detecção Precoce de Câncer , Humanos , Neoplasias/diagnóstico , Neoplasias/epidemiologia , SARS-CoV-2
6.
J Gen Intern Med ; 37(8): 1988-1995, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35391623

RESUMO

BACKGROUND: The incidence of persistent clinical symptoms and risk factors in Post-Acute Sequelae of SARS-CoV-2 (PASC) in diverse US cohorts is unclear. While there are a disproportionate share of COVID-19 deaths in older patients, ethnic minorities, and socially disadvantaged populations in the USA, little information is available on the association of these factors and PASC. OBJECTIVE: To evaluate the association of demographic and clinical characteristics with development of PASC. DESIGN: Prospective observational cohort of hospitalized and high-risk outpatients, April 2020 to February 2021. PARTICIPANTS: One thousand thirty-eight adults with laboratory-confirmed symptomatic COVID-19 infection. MAIN MEASURES: Development of PASC determined by patient report of persistent symptoms on questionnaires conducted 60 or 90 days after COVID-19 infection or hospital discharge. Demographic and clinical factors associated with PASC. KEY RESULTS: Of 1,038 patients with longitudinal follow-up, 309 patients (29.8%) developed PASC. The most common persistent symptom was fatigue (31.4%) followed by shortness of breath (15.4%) in hospitalized patients and anosmia (15.9%) in outpatients. Hospitalization for COVID-19 (odds ratio [OR] 1.49, 95% [CI] 1.04-2.14), having diabetes (OR, 1.39; 95% CI 1.02-1.88), and higher BMI (OR, 1.02; 95% CI 1-1.04) were independently associated with PASC. Medicaid compared to commercial insurance (OR, 0.49; 95% CI 0.31-0.77) and having had an organ transplant (OR 0.44, 95% CI, 0.26-0.76) were inversely associated with PASC. Age, race/ethnicity, Social Vulnerability Index, and baseline functional status were not associated with developing PASC. CONCLUSIONS: Three in ten survivors with COVID-19 developed a subset of symptoms associated with PASC in our cohort. While ethnic minorities, older age, and social disadvantage are associated with worse acute COVID-19 infection and greater risk of death, our study found no association between these factors and PASC.


Assuntos
COVID-19 , SARS-CoV-2 , Adulto , Idoso , COVID-19/complicações , COVID-19/diagnóstico , COVID-19/epidemiologia , Comorbidade , Humanos , Pacientes Internados , Pacientes Ambulatoriais , Estados Unidos/epidemiologia
7.
J Intensive Care Med ; 37(8): 1019-1028, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35382627

RESUMO

BACKGROUND: Understanding the long-term sequelae of severe COVID-19 remains limited, particularly in the United States. OBJECTIVE: To examine long-term outcomes of patients who required intensive care unit (ICU) admission for severe COVID-19. DESIGN, PATIENTS, AND MAIN MEASURES: This is a prospective cohort study of patients who had severe COVID-19 requiring an ICU admission in a two-hospital academic health system in Southern California. Patients discharged alive between 3/21/2020 and 12/31/2020 were surveyed approximately 6 months after discharge to assess health-related quality of life using Patient-Reported Outcomes Measurement Information System (PROMIS®)-29 v2.1, post-traumatic stress disorder (PTSD) and loneliness scales. A preference-based health utility score (PROPr) was estimated using 7 PROMIS domain scores. Patients were also asked their attitude about receiving aggressive ICU care. KEY RESULTS: Of 275 patients admitted to the ICU for severe COVID-19, 205 (74.5%) were discharged alive and 132 (64%, median age 59, 46% female) completed surveys a median of 182 days post-discharge. Anxiety, depression, fatigue, sleep disturbance, ability to participate in social activities, pain interference, and cognitive function were not significantly different from the U.S. general population, but physical function (44.2, SD 11.0) was worse. PROPr mean score of 0.46 (SD 0.30, range -0.02 to 0.96 [<0 is worse than dead and 1 represents perfect health]) was slightly lower than the U.S. general population, with an even distribution across the continuum. Poor PROPr was associated with chronic medical conditions and receipt of life-sustaining treatments, but not demographics or social vulnerability. PTSD was suspected in 20% and loneliness in 29% of patients. Ninety-eight percent of patients were glad they received life-saving treatment. CONCLUSION: Most patients who survive severe COVID-19 achieve positive outcomes, with health scores similar to the general population at 6 months post-discharge. However, there is marked heterogeneity in outcomes with a substantial minority reporting severely compromised health.


Assuntos
COVID-19 , Qualidade de Vida , Assistência ao Convalescente , COVID-19/terapia , Feminino , Humanos , Unidades de Terapia Intensiva , Masculino , Pessoa de Meia-Idade , Alta do Paciente , Estudos Prospectivos
8.
J Med Internet Res ; 23(12): e31121, 2021 12 08.
Artigo em Inglês | MEDLINE | ID: mdl-34889741

RESUMO

BACKGROUND: Obtaining explicit consent from patients to use their remnant biological samples and deidentified clinical data for research is essential for advancing precision medicine. OBJECTIVE: We aimed to describe the operational implementation and scalability of an electronic universal consent process that was used to power an institutional precision health biobank across a large academic health system. METHODS: The University of California, Los Angeles, implemented the use of innovative electronic consent videos as the primary recruitment tool for precision health research. The consent videos targeted patients aged ≥18 years across ambulatory clinical laboratories, perioperative settings, and hospital settings. Each of these major areas had slightly different workflows and patient populations. Sociodemographic information, comorbidity data, health utilization data (ambulatory visits, emergency room visits, and hospital admissions), and consent decision data were collected. RESULTS: The consenting approach proved scalable across 22 clinical sites (hospital and ambulatory settings). Over 40,000 participants completed the consent process at a rate of 800 to 1000 patients per week over a 2-year time period. Participants were representative of the adult University of California, Los Angeles, Health population. The opt-in rates in the perioperative (16,500/22,519, 73.3%) and ambulatory clinics (2308/3390, 68.1%) were higher than those in clinical laboratories (7506/14,235, 52.7%; P<.001). Patients with higher medical acuity were more likely to opt in. The multivariate analyses showed that African American (odds ratio [OR] 0.53, 95% CI 0.49-0.58; P<.001), Asian (OR 0.72, 95% CI 0.68-0.77; P<.001), and multiple-race populations (OR 0.73, 95% CI 0.69-0.77; P<.001) were less likely to participate than White individuals. CONCLUSIONS: This is one of the few large-scale, electronic video-based consent implementation programs that reports a 65.5% (26,314/40,144) average overall opt-in rate across a large academic health system. This rate is higher than those previously reported for email (3.6%) and electronic biobank (50%) informed consent rates. This study demonstrates a scalable recruitment approach for population health research.


Assuntos
Laboratórios Clínicos , Medicina de Precisão , Adolescente , Adulto , Estudos de Coortes , Eletrônica , Humanos , Consentimento Livre e Esclarecido
9.
Support Care Cancer ; 28(12): 5709-5715, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32193693

RESUMO

INTRODUCTION: Oncologists are increasingly encouraged to communicate with patients about cost; however, they may lack the cost health literacy required to effectively perform this task. METHODS: We conducted a pilot survey of oncologists in an academic medical center to assess potential factors that may influence provider attitudes and practices related to financial toxicity. We assessed perceived provider knowledge of treatment costs, insurance coverage and co-pays, and financially focused resources. We then evaluated the relationship between perceived knowledge and reported engagement with issues of financial toxicity. RESULTS: Of 45 respondents (85% response rate), 58% had changed treatment within the past year as a result of patient financial burden. On self-report, 36% discussed out-of-pocket costs with patients, 42% assessed patient financial distress, but only 20% felt they could intervene upon financial toxicity. Self-perceived awareness of cost health literacy concepts were low; only 16% reporting high out-of-pocket cost knowledge, 31-33% high insurance knowledge, and 8% high awareness of financial resources. Report of cost discussion was associated with greater perceived awareness of both out-of-pocket costs and insurance design. However, reported financial distress assessment was only associated with perceived insurance awareness, not perceived cost knowledge. Cost health literacy was not associated with an increased sense of being able to impact on financial toxicity. CONCLUSION: Oncologists acknowledge deficits in knowledge and skills that may play a role in the discussion and management of financial toxicity. Some cost health literacy competencies appear to correlate with physician involvement with financial toxicity, suggesting that education on this topic may facilitate physician engagement.


Assuntos
Custos de Cuidados de Saúde/normas , Gastos em Saúde/estatística & dados numéricos , Letramento em Saúde/economia , Oncologistas/economia , Médicos/economia , Feminino , Humanos , Masculino , Inquéritos e Questionários
10.
Psychooncology ; 28(11): 2226-2232, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31461546

RESUMO

OBJECTIVE: Elevated anxiety and breast cancer worry can impede mammographic screening and early breast cancer detection. Genetic advances and risk models make personalized breast cancer risk assessment and communication feasible, but it is unknown whether such communication of risk affects anxiety and disease-specific worry. We studied the effect of a personalized breast cancer screening intervention on risk perception, anxiety, and breast cancer worry. METHODS: Women with a normal mammogram but elevated risk for breast cancer (N = 122) enrolled in the Athena Breast Health risk communication program were surveyed before and after receiving a letter conveying their breast cancer risk and a breast health genetic counselor consultation. We compared breast cancer risk estimation, anxiety, and breast cancer worry before and after risk communication and evaluated the relationship of anxiety and breast cancer worry to risk estimation accuracy. RESULTS: Women substantially overestimated their lifetime breast cancer risk, and risk communication somewhat mitigated this overestimation (49% pre-intervention, 42% post-intervention, 13% Gail model risk estimate, P < .001). Both general anxiety and breast cancer worry declined significantly after risk communication in women with high baseline anxiety. Baseline anxiety and breast cancer worry were essentially unrelated to risk estimation accuracy, but risk communication increased alignment of worry with accuracy of risk assessment. CONCLUSIONS: Personalized communication about breast cancer risk was associated with modestly improved risk estimation accuracy in women with relatively low anxiety and less anxiety and breast cancer worry in women with higher anxiety. We detected no negative consequences of informing women about elevated breast cancer risk.


Assuntos
Ansiedade , Neoplasias da Mama/psicologia , Predisposição Genética para Doença/psicologia , Mamografia/psicologia , Adulto , Neoplasias da Mama/genética , Comunicação , Detecção Precoce de Câncer , Feminino , Aconselhamento Genético , Comportamentos Relacionados com a Saúde , Humanos , Pessoa de Meia-Idade , Medição de Risco , Fatores de Risco , Inquéritos e Questionários
11.
J Urol ; 200(2): 319-326, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29477721

RESUMO

PURPOSE: We sought to develop a core set of clinical indicators to enable international benchmarking of localized prostate cancer management using data available in the TrueNTH Global Registry. MATERIALS AND METHODS: An international expert panel completed an online survey and participated in a face-to-face meeting. Participants included 3 urologists, 3 radiation oncologists, 2 psychologists, 1 medical oncologist, 1 nurse and 1 epidemiologist with prostate cancer expertise from a total of 7 countries. Current guidelines on prostate cancer treatment and potential quality indicators were identified from a literature review. These potential indicators were refined and developed through a modified Delphi process during which each panelist independently and repeatedly rated each indicator based on importance (satisfying the indicator demonstrated a provision of high quality care) and feasibility (the likelihood that data used to construct the indicator could be collected at a population level). The main outcome measure was items with panel agreement indicated by a disagreement index less 1, median importance 8.5 or greater and median feasibility 9 or greater. RESULTS: The expert panel endorsed 33 indicators. Seven of these 33 prostate cancer quality indicators assessed care relating to diagnosis, 7 assessed primary treatment, 1 assessed salvage treatment and 18 assessed health outcomes. CONCLUSIONS: We developed a set of quality indicators to measure prostate cancer care using numerous international evidence-based clinical guidelines. These indicators will be pilot tested in the TrueNTH Global Registry. Reports comparing indicator performance will subsequently be distributed to groups at participating sites with the purpose of improving the consistency and quality of prostate cancer management on a global basis.


Assuntos
Benchmarking/métodos , Saúde Global/normas , Avaliação de Resultados em Cuidados de Saúde/métodos , Neoplasias da Próstata/terapia , Indicadores de Qualidade em Assistência à Saúde/normas , Benchmarking/normas , Técnica Delphi , Humanos , Comunicação Interdisciplinar , Cooperação Internacional , Masculino , Avaliação de Resultados em Cuidados de Saúde/normas , Guias de Prática Clínica como Assunto , Neoplasias da Próstata/diagnóstico , Sistema de Registros/estatística & dados numéricos , Inquéritos e Questionários , Resultado do Tratamento
14.
Clin Gastroenterol Hepatol ; 15(10): 1612-1619.e4, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28179192

RESUMO

BACKGROUND & AIMS: There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. METHODS: We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. RESULTS: Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. CONCLUSIONS: Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this population.


Assuntos
Doença Hepática Terminal/terapia , Cuidados Paliativos/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Custos de Cuidados de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
15.
Qual Life Res ; 26(3): 685-693, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-28000094

RESUMO

PURPOSE: Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. METHODS: We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. RESULTS: Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English- and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. CONCLUSIONS: Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.


Assuntos
Cuidadores/psicologia , Demência/psicologia , Qualidade de Vida , Estresse Psicológico , Adulto , Idoso , Idoso de 80 Anos ou mais , California , Características Culturais , Feminino , Grupos Focais , Objetivos , Hispânico ou Latino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade
17.
J Urol ; 196(4): 1196-200, 2016 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-27164512

RESUMO

PURPOSE: Our aim was to test the feasibility of a set of quality of care indicators for urinary incontinence and at the same time measure the care provided to women with urinary incontinence in 2 clinical settings. MATERIALS AND METHODS: This was a pilot test of a set of quality of care indicators. A total of 20 quality of care indicators were previously developed using the RAND Appropriateness Method. These quality of care indicators were used to measure care received for 137 women with a urinary incontinence diagnosis in a 120-physician hospital based multispecialty medical group. We also performed an abstraction of 146 patient records from primary care offices in Southern California. These charts were previously used as part of ACOVE (Assessing Care of Vulnerable Elders Project). As a post-hoc secondary analysis, the 2 populations were compared with respect to quality, as measured by compliance with the quality of care indicators. RESULTS: In the ACOVE population, 37.7% of patients with urinary incontinence underwent a pelvic examination vs 97.8% in the multispecialty medical group. Only 15.6% of cases in the multispecialty medical group and 14.2% in ACOVE (p = 0.86) had documentation that pelvic floor exercises were offered. Relatively few women with a body mass index of greater than 25 kg/m(2) were counseled about weight loss in either population (20.9% multispecialty medical group vs 26.1% ACOVE, p = 0.76). For women undergoing sling surgery, documentation of counseling about risks was lacking and only 9.3% of eligible cases (multispecialty medical group only) had documentation of the risks of mesh. CONCLUSIONS: Quality of care indicators are a feasible means to measure the care provided to women with urinary incontinence. Care varied by population studied and yet deficiencies in care were prevalent in both patient populations studied.


Assuntos
Gerenciamento Clínico , Terapia por Exercício/métodos , Atenção Primária à Saúde/normas , Indicadores de Qualidade em Assistência à Saúde , Qualidade da Assistência à Saúde , Incontinência Urinária/terapia , Estudos de Viabilidade , Feminino , Humanos , Pessoa de Meia-Idade , Projetos Piloto
18.
J Gen Intern Med ; 31(8): 909-17, 2016 08.
Artigo em Inglês | MEDLINE | ID: mdl-27008650

RESUMO

BACKGROUND: Little is known about how providers communicate recommendations when scientific uncertainty exists. OBJECTIVES: To compare provider recommendations to those in the scientific literature, with a focus on whether uncertainty was communicated. DESIGN: Qualitative (inductive systematic content analysis) and quantitative analysis of previously collected audio-recorded provider-patient office visits. PARTICIPANTS: Sixty-one providers and a socio-economically diverse convenience sample of 603 of their patients from outpatient community- and academic-based primary care, integrative medicine, and complementary and alternative medicine provider offices in Southern California. MAIN MEASURES: Comparison of provider information-giving about vitamin D to professional guidelines and scientific information for which conflicting recommendations or insufficient scientific evidence exists; certainty with which information was conveyed. RESULTS: Ninety-two (15.3 %) of 603 visit discussions touched upon issues related to vitamin D testing, management and benefits. Vitamin D deficiency screening was discussed with 23 (25 %) patients, the definition of vitamin D deficiency with 21 (22.8 %), the optimal range for vitamin D levels with 26 (28.3 %), vitamin D supplementation dosing with 50 (54.3 %), and benefits of supplementation with 46 (50 %). For each of the professional guidelines/scientific information examined, providers conveyed information that deviated from professional guidelines and the existing scientific evidence. Of 166 statements made about vitamin D in this study, providers conveyed 160 (96.4 %) with certainty, without mention of any equivocal or contradictory evidence in the scientific literature. No uncertainty was mentioned when vitamin D dosing was discussed, even when recommended dosing was higher than guideline recommendations. CONCLUSIONS AND RELEVANCE: Providers convey the vast majority of information and recommendations about vitamin D with certainty, even though the scientific literature contains inconsistent recommendations and declarations of inadequate evidence. Not communicating uncertainty blurs the contrast between evidence-based recommendations and those without evidence. Providers should explore best practices for involving patients in decision-making by acknowledging the uncertainty behind their recommendations.


Assuntos
Educação de Pacientes como Assunto/métodos , Relações Médico-Paciente , Médicos de Atenção Primária , Gravação em Fita/métodos , Incerteza , Vitamina D , Adulto , Idoso , Estudos Transversais , Suplementos Nutricionais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/normas , Médicos de Atenção Primária/normas , Vitamina D/sangue , Deficiência de Vitamina D/sangue , Deficiência de Vitamina D/diagnóstico , Deficiência de Vitamina D/dietoterapia
19.
J Gen Intern Med ; 31(10): 1119-26, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27188700

RESUMO

BACKGROUND: Physician Orders for Life-Sustaining Treatment (POLST) is a tool that facilitates the elicitation and continuity of life-sustaining care preferences. POLST was implemented in California in 2009, but how well it disseminated across a large, racially diverse population is not known and has implications for end-of-life care. OBJECTIVE: To evaluate the use of POLST among California nursing home residents, including variation by resident characteristics and by nursing home facility. DESIGN: Observational study using California Minimum Data Set Section S. PARTICIPANTS: A total of 296,276 people with a stay in 1,220 California nursing homes in 2011. MAIN MEASURES: The proportion of residents with a completed POLST (containing a resuscitation status order and resident/proxy and physician signatures) and relationship to resident characteristics; change in POLST use during 2011; and POLST completion and unsigned forms within nursing homes. KEY RESULTS: During 2011, POLST completion increased from 33 to 49 % of California nursing home residents. Adjusting for age and gender using a mixed-effects logistic model, long-stay residents were more likely than short-stay residents to have a completed POLST [OR = 2.36 (95 % CI 2.30, 2.42)]; severely cognitively impaired residents were less likely than unimpaired to have a completed POLST [OR = 0.89 (95 % CI 0.87, 0.92)]; and there was little difference by functional status. There was no difference in POLST completion among White non-Hispanic, Black, and Hispanic residents. Variation in POLST completion among nursing homes far exceeded that attributable to resident characteristics with 40 % of facilities having ≥80 % of long-stay residents with a completed POLST, while 20 % of facilities had ≤10 % of long-stay residents with a completed POLST. Thirteen percent of nursing home residents had a POLST containing a resuscitation preference but lacked a signature, rendering the POLST invalid. CONCLUSIONS: Statewide nursing home data show broad uptake of POLST in California without racial disparity. However, variation in POLST completion among nursing homes identifies potential areas for quality improvement.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Diretivas Antecipadas , Casas de Saúde/organização & administração , Assistência Terminal/organização & administração , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , California , Feminino , Humanos , Tempo de Internação/estatística & dados numéricos , Assistência de Longa Duração/organização & administração , Masculino , Pessoa de Meia-Idade , Preferência do Paciente , Melhoria de Qualidade , Ordens quanto à Conduta (Ética Médica)
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