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1.
JAMA Netw Open ; 6(11): e2343569, 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-37966843

RESUMO

This cross-sectional study uses a mystery shopper survey to examine variation in state Medicaid agency responses to coverage questions on out-of-state abortion care.


Assuntos
Aborto Legal , Medicaid , Feminino , Humanos , Gravidez , Estados Unidos
2.
Palliat Med ; 37(5): 740-748, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36802979

RESUMO

BACKGROUND: Many patients with advanced cancer have misperceptions of their prognosis, which may impact end-of-life decision-making. Data regarding associations between prognostic perceptions over time and end-of-life care outcomes are lacking. AIM: To describe patients' perceptions of their prognosis with advanced cancer and examine associations between these perceptions and end-of-life care outcomes. DESIGN: Secondary analysis of longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable cancer. SETTING/PARTICIPANTS: Conducted at an outpatient cancer center in the northeastern United States and patients were within 8 weeks of a diagnosis with incurable lung or non-colorectal gastrointestinal cancer. RESULTS: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period. Overall, 59.4% (164/276) of patients reported they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. Patient acknowledgment of terminal illness was only associated with lower risk of hospitalizations in the last 30 days of life (OR = 0.52, p = 0.025). Patients who reported their cancer as likely curable were less likely to utilize hospice (OR = 0.25, p = 0.002) or die at home (OR = 0.56, p = 0.043), and they were more likely to be hospitalized in the last 30 days of life (OR = 2.28, p = 0.011). CONCLUSIONS: Patients' perceptions of their prognosis are associated with important end-of-life care outcomes. Interventions are needed to enhance patients' perceptions of their prognosis and optimize their end-of-life care.


Assuntos
Neoplasias Gastrointestinais , Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Humanos , Cuidados Paliativos , Neoplasias Gastrointestinais/terapia , Neoplasias/diagnóstico , Prognóstico , Pulmão
3.
J Palliat Med ; 25(5): 749-756, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34861118

RESUMO

Background: Patients (≥60 years) with acute myeloid leukemia (AML) often receive intense health care utilization at the end of life (EOL). However, factors associated with their health care use at the EOL are unknown. Methods: We conducted a secondary analysis of 168 deceased patients with AML within the United States. We assessed quality of life (QOL) (Functional-Assessment-Cancer-Therapy-Leukemia), and psychological distress (Hospital-Anxiety-and-Depression Scale [HADS]; Patient-Health-Questionnaire-9 [PHQ-9]) at diagnosis. We used multivariable logistic regression models to examine the association between patient-reported factors and the following outcomes: (1) hospitalizations in the last 7 days of life, (2) receipt of chemotherapy in the last 30 days of life, and (3) hospice utilization. Results: About 66.7% (110/165) were hospitalized in the last 7 days of life, 51.8% (71/137) received chemotherapy in the last 30 days of life, and 40.7% (70/168) utilized hospice. In multivariable models, higher education (odds ratio [OR] = 1.54, p = 0.006) and elevated baseline depression symptoms (PHQ-9: OR = 1.09, p = 0.028) were associated with higher odds of hospitalization in the last seven days of life, while higher baseline QOL (OR = 0.98, p = 0.009) was associated with lower odds of hospitalization at the EOL. Higher baseline depression symptoms were associated with receipt of chemotherapy at the EOL (HADS-Depression: OR = 1.10, p = 0.042). Higher education was associated with lower hospice utilization (OR = 0.356, p = 0.024). Conclusions: Patients with AML who are more educated, with higher baseline depression symptoms and lower QOL, were more likely to experience high health care utilization at the EOL. These populations may benefit from interventions to optimize the quality of their EOL care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Leucemia Mieloide Aguda , Assistência Terminal , Morte , Atenção à Saúde , Humanos , Leucemia Mieloide Aguda/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Qualidade de Vida/psicologia , Estudos Retrospectivos , Assistência Terminal/psicologia , Estados Unidos
4.
J Palliat Med ; 25(3): 445-454, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34637630

RESUMO

Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. Results: The working group developed a conceptual framework for PAIS, identifying three domains: (1) cognitive understanding of prognosis (capacity to understand intellectually one's prognosis), (2) emotional coping (capacity to process prognostic uncertainty and terminal prognosis), and (3) adaptive response (capacity to use prognostic awareness to inform life decisions). Cognitive interviews revealed that patients had an accurate understanding of most PAIS items. Patients reported difficulty with binary response options for questions pertaining to emotional coping. They expressed difficulty answering numerous questions regarding their cognitive understanding of their prognosis. We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. Conclusion: We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.


Assuntos
Neoplasias , Adaptação Psicológica , Humanos , Neoplasias/psicologia , Prognóstico , Psicometria , Inquéritos e Questionários
5.
J Natl Compr Canc Netw ; : 1-7, 2021 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-34653964

RESUMO

BACKGROUND: Social support plays a crucial role for patients with aggressive hematologic malignancies as they navigate their illness course. The aim of this study was to examine associations of social support with overall survival (OS) and healthcare utilization in this population. METHODS: A cross-sectional secondary analysis was conducted using data from a prospective longitudinal cohort study of 251 hospitalized patients with aggressive hematologic malignancies at Massachusetts General Hospital from 2014 through 2017. Natural Language Processing (NLP) was used to identify the extent of patients' social support (limited vs adequate as defined by NLP-aided chart review of the electronic health record). Multivariable regression models were used to examine associations of social support with (1) OS, (2) death or readmission within 90 days of discharge from index hospitalization, (3) time to readmission within 90 days, and (4) index hospitalization length of stay. RESULTS: Patients had a median age of 64 years (range, 19-93 years), and most were White (89.6%), male (68.9%), and married (65.3%). A plurality of patients had leukemia (42.2%) followed by lymphoma (37.9%) and myelodysplastic syndrome/myeloproliferative neoplasm (19.9%). Using NLP, we identified that 8.8% (n=22) of patients had limited social support. In multivariable analyses, limited social support was associated with worse OS (hazard ratio, 2.00; P=.042) and a higher likelihood of death or readmission within 90 days of discharge (odds ratio, 3.11; P=.043), but not with time to readmission within 90 days or with index hospitalization length of stay. CONCLUSIONS: In this cohort of hospitalized patients with aggressive hematologic malignancies, we found associations of limited social support with lower OS and a higher likelihood of death or readmission within 90 days of hospital discharge. These findings underscore the utility of NLP for evaluating the extent of social support and the need for larger studies evaluating social support in patients with aggressive hematologic malignancies.

6.
Transplant Cell Ther ; 27(12): 1015.e1-1015.e7, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34536571

RESUMO

The global coronavirus disease 2019 (COVID-19) pandemic has drastically disrupted cancer care, potentially exacerbating patients' distress levels. Patients undergoing hematopoietic stem cell transplantation (HSCT) may be especially vulnerable to this pandemic stress. However, the associations of the COVID-19 pandemic with distress, fatigue, and quality of life (QoL) are not well understood in this population. In a cross-sectional analysis of data from 205 patients undergoing HSCT enrolled in a supportive care trial, we compared baseline pre-HSCT distress symptoms (depression, anxiety, and posttraumatic stress disorder [PTSD]), fatigue, and QoL between enrollees before (ie, March 2019-January 2020) and during (ie, March 2020-January 2021) the COVID-19 pandemic. We used linear regression models adjusting for sociodemographics and cancer diagnosis to examine the associations between enrollment period and patient-reported outcomes. We used semistructured qualitative interviews in 20 allogeneic HSCT recipients who were ≥3-months post-HSCT to understand the impact of the COVID-19 pandemic on their recovery post-HSCT. One hundred twenty-four participants enrolled before COVID-19, and 81 participants enrolled during the pandemic. The 2 cohorts had similar baseline demographics and disease risk factors. In multivariate regression models, enrollment during COVID-19 was not associated with pre-HSCT symptoms of depression, anxiety, PTSD, fatigue, or QoL impairment. COVID-19-era participants reported themes of negative (eg, increased isolation) and positive (eg, engagement with meaningful activities) implications of the pandemic on HSCT recovery. We found no differences in pre-HSCT distress, fatigue, or QoL in patients undergoing HSCT before or during the COVID-19 pandemic; however, patients in early recovery post-HSCT report both negative and positive implications of the COVID-19 pandemic in their lives.


Assuntos
COVID-19 , Transplante de Células-Tronco Hematopoéticas , Estudos Transversais , Humanos , Pandemias , Qualidade de Vida , SARS-CoV-2
7.
Transplant Cell Ther ; 27(6): 496.e1-496.e5, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33789836

RESUMO

Hematopoietic cell transplantation (HCT) is a potentially curative therapy for hematologic malignancies, but it often results in significant toxicities and impaired quality of life (QOL). Although the value of patient-reported outcomes (PROs) is increasingly recognized in HCT, data are limited regarding the relationship between PROs and HCT complications. We conducted a secondary data analysis of 250 patients who were hospitalized for autologous or allogeneic HCT at Massachusetts General Hospital from 2011 through 2016. We assessed QOL (Functional Assessment of Cancer Therapy-General), mood (Hospital Anxiety and Depression Scale), and fatigue (FACT-Fatigue) at baseline. We abstracted from the Electronic Health Record (1) hospitalization during the first 100 days after HCT, (2) days alive and out of the hospital in the first 100 days after HCT, and (3) cumulative incidence of acute graft-versus-host disease (GVHD) among allogeneic HCT recipients. We assessed the association of baseline PROs with HCT complications using multivariable models adjusting for patient and transplant characteristics. Overall, 44.4% (111/250) of patients underwent an autologous HCT, 25.2% (63/250) received a myeloablative allogeneic HCT, and 30.4% (76/250) underwent a reduced-intensity allogeneic HCT. In multivariable logistic regression, higher anxiety (odds ratio [OR] = 1.14, P = .004) was associated with higher likelihood of rehospitalization within 100 days after HCT. In multivariable Poisson regression, lower fatigue (ß = 0.003, P = .015) was associated with increased days alive and out of the hospital in the first 100 days post-HCT. In multivariable logistic regression, lower baseline QOL (OR = 0.97, P = .034), higher fatigue (OR = 0.95, P = .004), and higher depression (OR = 1.15, P = .020) were associated with increased likelihood of acute GVHD. Baseline PROs are associated with health care utilization after HCT and risk of acute GVHD in allogeneic HCT recipients. These findings underscore the potential utility of pretransplantation PROs as important prognostic factors for HCT.


Assuntos
Doença Enxerto-Hospedeiro , Transplante de Células-Tronco Hematopoéticas , Doença Enxerto-Hospedeiro/epidemiologia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Massachusetts/epidemiologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida
8.
Transplant Cell Ther ; 27(4): 341.e1-341.e6, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33836886

RESUMO

Hematopoietic stem cell transplantation (HCT) is an intensive and potentially curative therapy for patients with hematologic malignancies. Patients admitted for HCT experience a prolonged, isolating hospitalization and endure substantial physical and psychological symptoms. However, there is a paucity of research on the impact of HCT on post-traumatic stress disorder (PTSD) symptoms in transplant recipients. This secondary analysis of 250 patients who underwent autologous and allogeneic HCT examined PTSD using the PTSD Checklist-Civilian measured at 6 months after HCT. We used the Functional Assessment of Cancer Therapy-Bone Marrow Transplant, and the Hospital Anxiety and Depression Scale to assess quality of life (QOL) and depression and anxiety symptoms at the time of admission for HCT, week 2 during hospitalization, and 6 months after HCT. We used multivariate regression models to assess factors associated with PTSD symptoms. Given collinearity between QOL, depression, and anxiety symptoms, we modeled these separately. The rate of clinically significant PTSD symptoms at 6 months after HCT was 18.9% (39/206). Participants with clinically significant PTSD symptoms experienced hypervigilance (92.3%), avoidance (92.3%), and intrusion (76.9%) symptoms. Among patients without clinically significant PTSD symptoms, 24.5% had clinically significant hypervigilance symptoms and 13.7% had clinically significant avoidance symptoms. Lower QOL at time of HCT admission (B = -0.04, P = .004) and being single (B = -3.35, P = .027) were associated with higher PTSD symptoms at 6 months after HCT. Higher anxiety at time of HCT admission (B = 1.34, P <.001), change in anxiety during HCT hospitalization (B = 0.59, P =.006), and being single (B = -3.50, P = .017) were associated with higher PTSD symptoms at 6 months. In a separate model using depression, younger age (B = -0.13, P = .017), being single (B = -3.58, P = .018), and higher baseline depression symptoms were also associated with higher PTSD symptoms at 6 months (B = 0.97, P < .001). Approximately one fifth of patients undergoing HCT experience clinically significant PTSD symptoms at 6 months after transplantation. The prevalence of hypervigilance and avoidance symptoms are notable even among patients who do not have clinically significant PTSD symptoms. Interventions to prevent and treat PTSD symptoms in HCT recipients are clearly warranted.


Assuntos
Neoplasias Hematológicas , Transplante de Células-Tronco Hematopoéticas , Transtornos de Estresse Pós-Traumáticos , Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Recém-Nascido , Qualidade de Vida , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transplantados
9.
Bone Marrow Transplant ; 56(8): 1971-1977, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33824441

RESUMO

An inpatient palliative care intervention during HCT led to improvement in patient QOL and mood. We sought to describe components of the intervention, investigate differences in supportive care practices by treatment arm, and explore whether these differences mediated the impact of the intervention on patient QOL and mood. We conducted a secondary analysis of a randomized trial investigating inpatient palliative care integrated with transplant care versus standard transplant care for HCT recipients. Palliative care clinicians completed weekly surveys to describe topics addressed during visits. We extracted use of supportive care medications from the medical record. Participants completed QOL and mood assessments at baseline and two weeks post-HCT. Causal mediation assessed whether differences in supportive care practices mediated the impact of the intervention on patient-reported outcomes. A total of 160 HCT recipients participated. Palliative care visits most frequently focused on managing symptoms and coping with HCT. Patients randomized to the intervention were more likely to use Patient-Controlled Analgesia (PCA) (32.1% vs. 15.2%, p = 0.02) and atypical antipsychotics (35.8% vs. 17.7%, p = 0.01). Neither PCA nor atypical antipsychotics mediated the effect of the intervention on patient-reported outcomes. Future work to explore mechanisms by which the palliative care intervention improves QOL and mood is needed.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Cuidados Paliativos , Adaptação Psicológica , Humanos , Qualidade de Vida , Transplante de Células-Tronco
10.
J Natl Compr Canc Netw ; 19(8): 928-934, 2021 03 11.
Artigo em Inglês | MEDLINE | ID: mdl-33706257

RESUMO

BACKGROUND: CAR T-cell therapy has revolutionized the treatment of patients with hematologic malignancies, but it can result in prolonged hospitalizations and serious toxicities. However, data on the impact of CAR T-cell therapy on healthcare utilization and end-of-life (EoL) outcomes are lacking. METHODS: We conducted a retrospective analysis of 236 patients who received CAR T-cell therapy at 2 tertiary care centers from February 2016 through December 2019. We abstracted healthcare utilization and EoL outcomes from the electronic health record, including hospitalizations, receipt of ICU care, hospitalization and receipt of systemic therapy in the last 30 days of life, palliative care, and hospice referrals. RESULTS: Most patients (81.4%; n=192) received axicabtagene ciloleucel. Overall, 28.1% of patients experienced a hospital readmission and 15.5% required admission to the ICU within 3 months of CAR T-cell therapy. Among the deceased cohort, 58.3% (49/84) were hospitalized and 32.5% (26/80) received systemic therapy in the last 30 days of life. Rates of palliative care and hospice referrals were 47.6% and 30.9%, respectively. In multivariable logistic regression, receipt of bridging therapy (odds ratio [OR], 3.15; P=.041), index CAR-T hospitalization length of stay >14 days (OR, 4.76; P=.009), hospital admission within 3 months of CAR T-cell infusion (OR, 4.29; P=.013), and indolent lymphoma transformed to diffuse large B-cell lymphoma (OR, 9.83; P=.012) were associated with likelihood of hospitalization in the last 30 days of life. CONCLUSIONS: A substantial minority of patients receiving CAR T-cell therapy experienced hospital readmission or ICU utilization in the first 3 months after CAR T-cell therapy, and most deceased recipients of CAR T-cell therapy received intensive EoL care. These findings underscore the need for interventions to optimize healthcare delivery and EoL care for this population.


Assuntos
Imunoterapia Adotiva , Assistência Terminal , Morte , Atenção à Saúde , Humanos , Imunoterapia Adotiva/efeitos adversos , Aceitação pelo Paciente de Cuidados de Saúde , Estudos Retrospectivos
11.
Cancer ; 127(8): 1260-1265, 2021 04 15.
Artigo em Inglês | MEDLINE | ID: mdl-33598938

RESUMO

BACKGROUND: Social support is crucial for successful recovery after hematopoietic stem cell transplantation (HSCT) and has the potential to affect patient quality of life (QOL) and health outcomes. However, there are limited data on the relationship between a patient's perception of his or her social support and these outcomes. METHODS: The authors conducted a secondary analysis of 250 autologous and allogeneic HSCT recipients enrolled in 2 supportive care trials at Massachusetts General Hospital from April 2011 through February 2016. They assessed social support as a patient's perception of his or her social well-being via the social well-being subscale of the Functional Assessment of Cancer Therapy. The authors used multivariate regression analyses to examine the relationship between pretransplant social well-being and QOL (Functional Assessment of Cancer Therapy-Treatment Outcome Index), psychological distress (Hospital Anxiety and Depression Scale), posttraumatic stress disorder [PTSD] symptoms (PTSD Checklist), fatigue (Functional Assessment of Cancer Therapy-Fatigue), and health care utilization (hospitalizations and days alive and out of the hospital) 6 months after HSCT. RESULTS: Participants were on average 56.4 years old (SD, 13.3 years); 44% (n = 110) and 56% (n = 140) received autologous and allogeneic HSCT, respectively. Greater pre-HSCT social well-being was associated with higher QOL (B = 0.10; 95% CI, 0.06-0.13; P < .001), lower psychological distress (B = -0.21; 95% CI, -0.29 to -0.12; P < .001), and lower PTSD symptoms (B = -0.12; 95% CI, -0.19 to -0.06; P < .001). Pre-HSCT social well-being was not significantly associated with fatigue or health care utilization 6 months after HSCT. CONCLUSIONS: Patients with higher pre-HSCT perceptions of their social support reported better QOL and lower psychological distress 6 months after HSCT. These findings underscore the potential for social support as a modifiable target for future supportive care interventions to improve the QOL and care of HSCT recipients.


Assuntos
Empatia , Transplante de Células-Tronco Hematopoéticas/psicologia , Qualidade de Vida/psicologia , Apoio Social , Lista de Checagem , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Angústia Psicológica , Análise de Regressão , Fatores Socioeconômicos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Resultado do Tratamento
12.
J Pain Symptom Manage ; 61(3): 488-494, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32882355

RESUMO

CONTEXT: Individuals caring for patients with advanced cancer (caregivers) experience psychological distress during the patient's illness course. However, data on the prevalence of bereaved caregivers' psychological distress and its relationship with the quality of patient's end of life (EOL) care are limited. OBJECTIVES: To describe rates of depression and anxiety symptoms in bereaved caregivers of patients with advanced cancer and to understand the relationship between these outcomes and patient distress at the EOL. METHODS: We conducted a secondary analysis of 168 caregivers enrolled in a supportive care trial for patients with incurable lung and gastrointestinal cancers and their caregivers. We used the Hospital Anxiety and Depression Scale to assess caregivers' depression and anxiety symptoms at three months after the patient's death. Caregivers also rated the patient's physical and psychological distress in the last week of life on a 10-point scale three months after the patient death. We used linear regression adjusting for caregiver age, sex, randomization, and cancer type to explore the relationship between bereaved caregivers' depression and anxiety symptoms and their ratings of physical and psychological distress in patients at the EOL. RESULTS: Of the 168 bereaved caregivers, 30.4% (n = 51) and 43.4% (n = 73) reported clinically significant depression and anxiety symptoms, respectively. Caregiver ratings of worse physical (B = 0.32; P = 0.009) and psychological (B = 0.50; P < 0.001) distress experienced by the patient at the EOL were associated with worse depression symptoms in bereaved caregivers. Only caregiver rating of worse psychological distress experienced by the patient at the EOL (B = 0.42; P < 0.001) was associated with worse bereaved caregivers' anxiety symptoms. CONCLUSION: Many bereaved caregivers of patients with advanced cancer experience symptoms of depression and anxiety, which are associated with their perceptions of distress in their loved ones at the EOL.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Angústia Psicológica , Assistência Terminal , Cuidadores , Depressão/epidemiologia , Humanos , Neoplasias/terapia , Qualidade de Vida , Estresse Psicológico
13.
Proc Natl Acad Sci U S A ; 116(31): 15414-15419, 2019 07 30.
Artigo em Inglês | MEDLINE | ID: mdl-31308233

RESUMO

Radioactive contamination of fruits in the northern Marshall Islands, resulting from the US nuclear weapons testing program in the 1940s and 1950s, is still a human health concern, in particular pertaining to island population resettlement and the economic benefit from farming. Over 200 fruits, primarily coconuts and pandanus, were collected on 11 islands from four atolls in the northern Marshall Islands in 2017. The energy spectra from nuclear gamma decays were measured on a research vessel for each fruit in situ. From these recordings, the level of cesium-137 (137Cs) contamination was determined for individual fruits. Comparisons of the results are made to past studies and international food safety standards. There is a broad distribution of values, ranging from below detectable radiation levels to relatively high levels; safety concerns are largest for Bikini Island. A noticeable fraction of fruits from Bikini have significantly higher levels of 137Cs contamination compared with those from all other measured islands.


Assuntos
Radioisótopos de Césio/análise , Frutas/química , Monitoramento de Radiação , Poluentes Radioativos/antagonistas & inibidores , Micronésia , Padrões de Referência
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