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1.
Support Care Cancer ; 32(3): 184, 2024 Feb 23.
Artigo em Inglês | MEDLINE | ID: mdl-38393418

RESUMO

PURPOSE: This study provides an updated evaluation of the prevalence and severity of acute cancer-related symptoms and quality of life (QOL) concerns among patients treated with emetogenic chemotherapy. METHODS: Patients were recruited to a larger, multi-site observational study prior to starting chemotherapy. Participants completed sociodemographic questionnaires and clinical data were abstracted via medical record review. Symptoms and QOL were assessed 5 days after starting moderately or highly emetogenic chemotherapy. Functional Assessment of Cancer Therapy - General assessed QOL concerns. Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events evaluated symptoms. Symptoms were considered severe when participants responded "severe" or "very severe." RESULTS: Participants (N = 1174) were on average 58 ± 13 years, mostly female (73%), non-Hispanic (89%), and White (87%). Most participants were diagnosed with breast (38.1%), gynecological (20%), and gastrointestinal (17.1%) cancer. The most common QOL concerns of any severity were fatigue (94%), anhedonia (89%), dissatisfaction with QOL (86%), and sleep disturbance (86%). The most common severe QOL concerns were anhedonia (44%), fatigue (40%), and inability to work (38%). Decreased appetite (74%), pain (71%), and constipation (70%) were the most common symptoms of any severity, as well as most common severe symptoms (13%, 18%, and 18%, respectively). CONCLUSION: Herein, updates are provided in regard to QOL concerns and symptoms reported by patients in the days after chemotherapy and demonstrates that concerns and symptoms have shifted in the last decade.


Assuntos
Neoplasias , Qualidade de Vida , Feminino , Humanos , Masculino , Anedonia , Fadiga/induzido quimicamente , Fadiga/epidemiologia , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Inquéritos e Questionários , Pessoa de Meia-Idade , Idoso
2.
Cancer ; 128(3): 461-470, 2022 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-34643945

RESUMO

Uncontrolled chemotherapy-induced nausea and vomiting can reduce patients' quality of life and may result in premature discontinuation of chemotherapy. Although nausea and vomiting are commonly grouped together, research has shown that antiemetics are clinically effective against chemotherapy-induced vomiting (CIV) but less so against chemotherapy-induced nausea (CIN). Nausea remains a problem for up to 68% of patients who are prescribed guideline-consistent antiemetics. Despite the high prevalence of CIN, relatively little is known regarding its etiology independent of CIV. This review summarizes a metagenomics approach to the study and treatment of CIN with the goal of encouraging future research. Metagenomics focuses on genetic risk factors and encompasses both human (ie, host) and gut microbial genetic variation. Little work to date has focused on metagenomics as a putative biological mechanism of CIN. Metagenomics has the potential to be a powerful tool in advancing scientific understanding of CIN by identifying new biological pathways and intervention targets. The investigation of metagenomics in the context of well-established demographic, clinical, and patient-reported risk factors may help to identify patients at risk and facilitate the prevention and management of CIN.


Assuntos
Antieméticos , Antineoplásicos , Neoplasias , Antieméticos/uso terapêutico , Antineoplásicos/uso terapêutico , Humanos , Metagenômica , Náusea/induzido quimicamente , Náusea/tratamento farmacológico , Náusea/prevenção & controle , Neoplasias/induzido quimicamente , Neoplasias/tratamento farmacológico , Qualidade de Vida , Vômito/induzido quimicamente
3.
Support Care Cancer ; 31(1): 75, 2022 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-36544032

RESUMO

PURPOSE: No evidence-based prevention strategies currently exist for cancer-related cognitive decline (CRCD). Although patients are often advised to engage in healthy lifestyle activities (e.g., nutritious diet), little is known about the impact of diet on preventing CRCD. This secondary analysis evaluated the association of pre-treatment diet quality indices on change in self-reported cognition during chemotherapy. METHODS: Study participants (n = 96) completed the Block Brief Food Frequency Questionnaire (FFQ) before receiving their first infusion and the PROMIS cognitive function and cognitive abilities questionnaires before infusion and again 5 days later (i.e., when symptoms were expected to be their worst). Diet quality indices included the Dietary Approaches to Stop Hypertension (DASH), Alternate Mediterranean Diet (aMED), and a low carbohydrate diet index and their components. Descriptive statistics were generated for demographic and clinical variables and diet indices. Residualized change models were computed to examine whether diet was associated with change in cognitive function and cognitive abilities, controlling for age, sex, cancer type, treatment type, depression, and fatigue. RESULTS: Study participants had a mean age of 59 ± 10.8 years and 69% were female. Although total diet index scores did not predict change in cognitive function or cognitive abilities, higher pre-treatment ratio of aMED monounsaturated/saturated fat was associated with less decline in cognitive function and cognitive abilities at 5-day post-infusion (P ≤ .001). CONCLUSIONS: Higher pre-treatment ratio of monounsaturated/saturated fat intake was associated with less CRCD early in chemotherapy. Results suggest greater monounsaturated fat and less saturated fat intake could be protective against CRCD during chemotherapy.


Assuntos
Disfunção Cognitiva , Dieta Mediterrânea , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Masculino , Dieta , Cognição , Disfunção Cognitiva/induzido quimicamente , Disfunção Cognitiva/prevenção & controle
4.
J Natl Compr Canc Netw ; 18(6): 783-790, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32502977

RESUMO

Bladder cancer is an extremely common cancer that primarily affects individuals aged >65 years. In caring for patients with bladder cancer, clinicians must also consider care of older persons in general. Management of muscle-invasive bladder cancer (MIBC) involves multidisciplinary treatment planning, because curative-intent therapy includes either surgery or radiation, with consideration of the role of systemic therapy. As clinicians develop a treatment plan, considering a geriatric oncology perspective may enhance patient care and influence outcomes for this large and growing population. Similarly, treatment plan development must also consider aspects unique to an older patient population, such as altered organ function, increased comorbidity, decreased functional reserve, and perhaps altered goals of treatment. Thus a thorough evaluation inclusive of disease assessment and geriatric assessment is essential to care planning. Population-based data show that as patients with MIBC age, use of standard therapies declines. Given the complexities of coordinating a multidisciplinary care plan, as well the complexities of treating a heterogeneous and potentially vulnerable older patient population, clinicians may benefit from upfront assessments to inform and guide the process. This review highlights the unique treatment planning considerations for elderly patients diagnosed with MIBC.


Assuntos
Neoplasias da Bexiga Urinária/terapia , Idoso , Idoso de 80 Anos ou mais , Feminino , Avaliação Geriátrica , Humanos , Masculino , Invasividade Neoplásica , Neoplasias da Bexiga Urinária/patologia
5.
Psychooncology ; 29(4): 688-695, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31834646

RESUMO

OBJECTIVE: Interventions are needed to improve mental health (ie, depression, anxiety) and palliative care (ie, symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer. METHODS: An interprofessional study team used the ecological validity model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated puente para cuidar intervention. RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of puente para cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates. CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.


Assuntos
Aconselhamento/métodos , Hispânico ou Latino , Neoplasias/psicologia , Avaliação de Processos e Resultados em Cuidados de Saúde , Cuidados Paliativos/métodos , Navegação de Pacientes/métodos , Angústia Psicológica , Adulto , Estudos de Viabilidade , Humanos , Projetos Piloto
6.
Support Care Cancer ; 26(8): 2911-2918, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-29546524

RESUMO

PURPOSE: Chemotherapy-induced nausea and vomiting (CINV) is common among cancer patients. Early identification of patients at risk for CINV may help to personalize anti-emetic therapies. To date, few studies have examined the combined contributions of patient-reported and genetic risk factors to CINV. The goal of this study was to evaluate these risk factors. METHODS: Prior to their first chemotherapy infusion, participants completed demographic and risk factor questionnaires and provided a blood sample to measure genetic variants in ABCB1 (rs1045642) and HTR3B (rs45460698) as well as CYP2D6 activity score. The M.D. Anderson Symptom Inventory was completed at 24 h and 5-day post-infusion to assess the severity of acute and delayed CINV, respectively. RESULTS: Participants were 88 patients (55% female, M = 60 years). A total of 23% experienced acute nausea and 55% delayed nausea. Younger age, history of pregnancy-related nausea, fewer hours slept the night prior to infusion, and variation in ABCB1 were associated with more severe acute nausea; advanced-stage cancer and receipt of highly emetogenic chemotherapy were associated with more severe delayed nausea (p values < 0.05). In multivariable analyses, ABCB1 added an additional 5% predictive value beyond the 13% variance explained by patient-reported risk factors. CONCLUSIONS: The current study identified patient-reported and genetic factors that may place patients at risk for acute nausea despite receipt of guideline-consistent anti-emetic prophylaxis. Additional studies examining other genetic variants are needed, as well as the development of risk prediction models including both patient-reported and genetic risk factors.


Assuntos
Antieméticos/uso terapêutico , Variação Genética/genética , Quimioterapia de Indução/efeitos adversos , Náusea/induzido quimicamente , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Vômito/induzido quimicamente , Antineoplásicos/efeitos adversos , Feminino , Humanos , Quimioterapia de Indução/métodos , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Estudos Prospectivos , Fatores de Risco
7.
Res Nurs Health ; 41(6): 501-510, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30302769

RESUMO

Latinos are more likely to experience uncontrolled pain, and institutional death, and are less likely to engage in advance care planning. Efforts to increase access to palliative care must maximize primary palliative care and community based models to meet the ever-growing need in a culturally sensitive and congruent manner. Patient navigator interventions are community-based, culturally tailored models of care that have been successfully implemented to improve disease prevention, early diagnosis, and treatment. We have developed a patient navigation intervention to improve palliative care outcomes for seriously ill Latinos. We describe the protocol for a National Institute of Nursing Research-funded randomized controlled trial designed to determine the effectiveness of the manualized patient navigator intervention. We aim to enroll 240 Latino adults with non-cancer, advanced medical illness from both urban and rural clinical sites. Participants will be randomized to the intervention group (five palliative care patient navigator visits plus bilingual educational materials) or control group (usual care plus bilingual educational materials). Outcomes include quality of life (Functional Assessment of Chronic Illness Therapy), advance care planning (Advance Care Planning Engagement survey), pain (Brief Pain Inventory), symptom management (Edmonton Symptom Assessment Scale-revised), hospice utilization, and cost and utilization of healthcare resources. This culturally tailored, evidence-based, theory-driven, innovative patient navigation intervention has significant potential to improve palliative care for Latinos, and facilitate health equity in palliative and end-of-life care.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Assistência à Saúde Culturalmente Competente/organização & administração , Hispânico ou Latino , Cuidados Paliativos/organização & administração , Navegação de Pacientes/organização & administração , Feminino , Humanos , Masculino , Ensaios Clínicos Controlados Aleatórios como Assunto , Apoio Social
8.
J Natl Compr Canc Netw ; 15(11): 1392-1399, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-29118231

RESUMO

Background: We present and describe tailored strategies to address known barriers to minority participation in clinical trial research. The strategies used allowed our team to engage communities and successfully recruit, enroll, and retain a diverse underserved population of Latinos with advanced cancer for this clinical trial. Methods: Participants were recruited from 3 urban and 7 rural sites. We identified 4 critical barriers to recruitment for this underserved population: (1) mistrust; (2) language and communication barriers; (3) lack of access to academic cancer center; and (4) inability to participate due to transportation, childcare, or work responsibilities. We developed tailored strategies to engage referring sites and patients to participate in the clinical trial. Results: We identified 318 potentially eligible participants; 34 were found to be ineligible, and 223 consented to participate in the study, representing a 79.0% enrollment rate. All patients (100%) self-identified as Latino, and 47.5% spoke Spanish as their primary language. Patients were socioeconomically disadvantaged: 53.6% had an annual income <$15,000 USD, and 50.2% had less than a high school education. A total of 177 participants completed the 3-month follow-up; 26 died before the 3-month follow interview, and 20 did not complete the follow-up evaluation (9% withdrawal rate). Conclusions: Our community-informed strategies were highly effective for recruiting, enrolling, and retaining an underserved diverse population of Latinos. The barriers we identified and the strategies we used have the potential to inform research to increase minority participation in cancer clinical trials. ClinicalTrials.gov identifier: NCT01695382.


Assuntos
Disparidades em Assistência à Saúde/estatística & dados numéricos , Hispânico ou Latino/estatística & dados numéricos , Neoplasias/terapia , Cuidados Paliativos/métodos , Seleção de Pacientes , Adulto , Idoso , Idoso de 80 Anos ou mais , Escolaridade , Humanos , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias/patologia , Fatores Socioeconômicos , Adulto Jovem
9.
J Palliat Med ; 2024 Jun 21.
Artigo em Inglês | MEDLINE | ID: mdl-38904086

RESUMO

Objective: The objective of this study was to examine the association between portal use and end-of-life (EOL) outcomes in the last year of life. Methods: A retrospective cohort (n = 6,517) study at Kaiser Permanente Colorado among adults with serious illness deceased between January 1, 2016, and June 30, 2019. Portal use was categorized into engagement types: no use, nonactive, active without a provider, and active with a provider. EOL outcomes were hospitalizations in the month before death, last-year advance directive completion, and hospice use. Association between EOL outcomes and levels of portal use was assessed using χ2 statistics and generalized linear models. Results: Higher portal engagement types were associated with higher rates of hospitalizations (p = 0.0492), advance directive completion (p = 0.0226), and hospice use (p = 0.0070). Conclusion: Portal use in the last year of life was associated with increases in a poor EOL outcome, hospitalizations, and beneficial EOL outcomes, advance directives, and hospice care.

10.
JAMA Intern Med ; 184(4): 384-393, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38345793

RESUMO

Importance: Disparities persist across the trajectory of serious illness, including at the end of life. Patient navigation has been shown to reduce disparities and improve outcomes for underserved populations. Objective: To determine the effectiveness of a lay patient navigator intervention, Apoyo con Cariño, in improving palliative care outcomes among Hispanic patients. Design, Setting, and Participants: This was a multicenter randomized clinical trial that took place across academic, nonprofit, safety-net, and community health care systems in urban, rural, and mountain/frontier regions of Colorado from January 2017 to January 2021. Self-identifying Hispanic adults with serious noncancer medical illness and limited prognosis were recruited. Data were collected and analyzed from July 2022 to July 2023. Interventions: Participants randomized to the intervention group received 5 home visits from a bilingual, bicultural lay patient navigator; participants randomized to control received care as usual. Both groups received culturally tailored educational materials. Investigators/outcome accessors remained blinded to participant assignment. Main Outcomes and Measures: Change in score from baseline to 3 months on the Functional Assessment of Chronic Illness Therapy (FACIT) General quality of life (QOL) scale (primary outcome), Advance Care Planning (ACP) Engagement Survey, Brief Pain Inventory, Edmonton Symptom Assessment Scale, and FACIT Spiritual Well-Being subscale; at 6 months, advance directive (AD) documentation; and at 46 months or death, hospice utilization and length of stay, as well as aggressiveness of care at end of life. Results: Of 209 patients enrolled (mean [SD] age, 63.6 [14.3] years; 108 [51.7%] male), 105 patients were randomized to control and 104 patients to the intervention. There were no statistically significant differences in the change in mean (SD) QOL score between the intervention and control groups (5.0 [16.5] vs 4.3 [15.5]; P = .75). Participants in the intervention group, compared with the control group, had statistically significant greater increases in mean (SD) ACP engagement (0.8 [1.3] vs 0.1 [1.4]; P < .001) and were more likely to have a documented AD (62 of 104 [59.6%] vs 28 of 105 [26.9%]; P < .001). There were no statistically significant differences in mean (SD) change in pain intensity score (0-10) between patients in the intervention group compared with control (-0.4 [2.6] vs -0.5 [2.8]; P = .79), nor pain interference (-0.2 [3.7] vs -0.4 [3.7]; P = .71). Patients receiving the intervention were more likely to be referred to hospice compared with patients receiving control (19 of 43 patients [44.2%] vs 7 of 33 patients [21.2%]; P = .04) and less likely to receive aggressive care at end of life (27 of 42 patients [64.3%] vs 28 of 33 patients [84.8%]; P = .046). Conclusion and Relevance: In this randomized clinical trial, a culturally tailored patient navigator intervention did not improve QOL for patients. However, the intervention did increase ACP engagement, AD documentation, and hospice utilization in Hispanic persons with serious medical illness. Trial Registration: ClinicalTrials.gov Identifier: NCT03181750.


Assuntos
Cuidados Paliativos , Navegação de Pacientes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Morte , Hispânico ou Latino , Dor , Qualidade de Vida , Idoso
11.
J Palliat Med ; 26(8): 1081-1089, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36856522

RESUMO

Background: Post-acute care outcomes for patients with cancer <65 with multiple payers are largely unknown. Objective: Describe the population and outcomes of younger adults discharged to skilled nursing facility (SNF) and those discharged home or with home health care six months following hospitalization. Design: Descriptive cohort analysis. Setting/Subjects: Using a linkage between the Colorado All Payers Claims Database and the Colorado Central Cancer Registry, we studied patients <65 with stage III or IV advanced cancer between 2012 and 2017. Measurements: Receipt of cancer treatment, 30-day readmission, death, and hospice use. Groups of interest were compared by patient demographics and disease characteristics using chi-square tests. Logistic regression was used to describe unadjusted and adjusted outcome rates among discharge setting. Kaplan-Meier method was used to estimate survival by discharge destination. Results: Three percent of patients were discharged to SNF, 79.0% to home, and 18.0% to home health care. SNF discharges were less likely to receive cancer treatment. Among decedents, 39.0%, 51.0%, and 58.0% of SNF, home, and home health care discharges received hospice, respectively. Patients with Medicaid were more likely to be discharged to an SNF. Black/Hispanic patients were more likely to have Medicaid and received less radiation and hospice care, irrespective of discharge location. Those who were discharged to SNF were more likely to receive radiation compared to White patients. Conclusions: Younger patients with cancer discharged to SNF were unlikely to receive cancer treatment and hospice care before death. Racial disparities exist in cancer treatment receipt and hospice use warranting further investigation.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adulto , Estados Unidos , Humanos , Cuidados Semi-Intensivos , Medicare , Hospitalização , Readmissão do Paciente , Alta do Paciente , Morte , Estudos Retrospectivos , Neoplasias/terapia
12.
J Palliat Med ; 26(12): 1618-1626, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37311202

RESUMO

Background: Underserved Hispanic patients often experience unmet palliative care (PC) needs, particularly those with noncancer diagnoses such as Alzheimer's disease and related dementias. Most caregivers for Hispanic patients are family relatives who are less likely to use health care and community resources and experience high caregiver burden. We adapted a culturally tailored patient navigator (PN) intervention to provide support and improve PC outcomes for Hispanics with Alzheimer's disease and related dementias and their family caregivers (FCGs). Objectives: To explore Hispanic FCGs' experiences and perceptions of caregiving for a loved one, and how our PN intervention impacted their needs. Design: Qualitative descriptive. Setting/Subjects: FCG participants (n = 10) from our randomized control trial's intervention group were recruited from academic and safety net hospitals and community-based clinics across urban and rural Colorado in the United States. Measurements: Data obtained from individual, semistructured, 30-minute telephone interviews were recorded, transcribed, translated, and analyzed using NVivo and qualitative thematic analyses. Results: Four major themes emerged: Methods of Support, Cultural Expectations and Varying Family Contributions, Lack of Self-Care, and Awareness. Subthemes highlighted differing definitions of "contributing," role resentment, and interpersonal issues. Varying familial expectations underscore FCG strain when the burden of caregiving is not shared. Participants used various coping strategies as necessary support and gained awareness through education, guidance, and referrals to resources. Conclusions: PNs helped FCGs and patients beyond the intervention's scope. Providing support and awareness to FCGs, and incorporating cultural beliefs, may improve PC access to disparate populations and guide future interventions. Clinical Trial Registration Number NCT03181750.


Assuntos
Doença de Alzheimer , Humanos , Sobrecarga do Cuidador , Cuidadores , Família , Hispânico ou Latino , Cuidados Paliativos , Ensaios Clínicos Controlados Aleatórios como Assunto
13.
J Palliat Med ; 26(2): 182-190, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36190490

RESUMO

Background: Little is known about how local area hospice capacity and staffing levels impact hospice use in urban versus rural areas. Objectives: To examine the association between local hospice capacity and staffing levels and hospice use in the context of rural disparities in hospice use, among a sample of patients with metastatic breast cancer. Design: A retrospective cohort study using Surveillance Epidemiology End-Results (SEER)-Medicare linked data 2000-2010, Medicare Provider of Service files, and Census 2000 U.S. Zip Code Tabulation Areas files. Setting: Use of Medicare-certified hospice programs among older adults with metastatic breast cancer residing in one of the SEER program cancer registries designated by National Cancer Institute in the United States. Measurements: Measurements of geographic access to hospices include urban/rural characteristics of patient residence and driving time from the nearest Medicare-certified hospice headquarter. Measurements of local-area hospice capacity and staffing levels include per capita number of Medicare-certified hospice programs and full-time employees among older adults within a predefined radius. Results: Among the study population (N = 5418), remote and suburban areas were negatively associated with hospice use. Lower hospice use in remote and suburban areas was associated with fewer per capita number of Medicare-certified hospice program employees in local areas ≥70-minute driving radius (p = 0.0042), while per capita number of Medicare-certified hospice programs in local areas showed no impact. Conclusion: For older patients with metastatic breast cancer, availability of hospice staff, rather than driving distance or the number of hospice agencies, may limit hospice use in remote and suburban areas.


Assuntos
Neoplasias da Mama , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Idoso , Estados Unidos , Feminino , Estudos Retrospectivos , Medicare
14.
JMIR Res Protoc ; 12: e43702, 2023 Jan 31.
Artigo em Inglês | MEDLINE | ID: mdl-36719721

RESUMO

BACKGROUND: Firearm safety among individuals with Alzheimer disease and related dementias (ADRD) is an underdiscussed and underresearched concern in the United States, especially given the growing population of community-dwelling adults with ADRD. The "Safety in Dementia" (SiD) web-based decision aid was developed to support caregivers in addressing firearm access; the efficacy of SiD is unknown. OBJECTIVE: Through the SiD decision aid, the Safe at Home (S@H) study aims to support caregivers in making decisions about home safety that align with their goals and values, and behaviors regarding firearm access for persons with ADRD and firearm access. METHODS: The S@H study is a 2-armed randomized controlled trial to test the effect of the SiD decision aid on caregivers of community-dwelling adults with ADRD who have firearm access. S@H aims to recruit 500 ADRD caregivers (age ≥18 years, fluent in English or Spanish, and in the United States) through online or social media advertisements and through relevant organizations. Participants are randomized to view SiD or a control website at their own pace; all participants complete web-based questionnaires at baseline, 2 weeks, 2 months, and 6 months. The primary outcome is immediate preparation for decision-making; secondary outcomes include longitudinal decision outcomes and self-reported modifications to firearm access. The relative reach and effectiveness of each recruitment method (online/social media and through relevant organizations) will be assessed by examining differences in caregiver participation, retention rates, and relative cost. RESULTS: The study enrollment began in May 2022. As of December 2022, a total of 117 participants had enrolled. CONCLUSIONS: The S@H study is the first randomized trial of a firearm safety decision aid for ADRD caregivers. The results from this study will inform how best to support caregivers in decision-making regarding firearm safety. Further, results may guide approaches for recruiting caregivers and for dissemination of resources. TRIAL REGISTRATION: ClinicalTrials.gov NCT05173922; https://clinicaltrials.gov/ct2/show/NCT05173922. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/43702.

15.
Cancers (Basel) ; 15(22)2023 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-38001600

RESUMO

Early integrated palliative care (EIPC) significantly improves clinical outcomes for patients with advanced cancer. Telehealth may be a useful tool to deliver EIPC sustainably and equitably. Palliative care clinicians completed a survey regarding their perceptions of the barriers, facilitators, and benefits of using telehealth video visits for delivering EIPC for patients with advanced lung cancer. Forty-eight clinicians across 22 cancer centers completed the survey between May and July 2022. Most (91.7%) agreed that telehealth increases access to EIPC and simplifies the process for patients to receive EIPC (79.2%). Clinicians noted that the elderly, those in rural areas, and those with less-resourced backgrounds have greater difficulty using telehealth. Perceived barriers were largely patient-based factors, including technological literacy, internet and device availability, and patient preferences. Clinicians agreed that several organizational factors facilitated telehealth EIPC delivery, including technological infrastructure (85.4%), training (83.3%), and support from study coordinators (81.3%). Other barriers included systems-based factors, such as insurance reimbursement and out-of-state coverage restrictions. Patient-, organization-, and systems-based factors are all important to providing and improving access to telehealth EIPC services. Further research is needed to investigate the efficacy of telehealth EIPC and how policies and interventions may improve access to and dissemination of this care modality.

16.
J Geriatr Oncol ; 13(4): 432-439, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35123920

RESUMO

OBJECTIVES: Advanced bladder cancer (ABC) disproportionately affects older adults, and little is known about older patients' priorities for care planning in advanced cancer. Patient-centered communication remains crucial to shared decision-making between patients, families, and providers. Yet, older patients with cancer may not always know how to express their preferences, and oncologists do not always review patients' informational needs. This study aimed to understand preferences of older patients with ABC related to their communication with providers and navigation of care planning. MATERIALS AND METHODS: This qualitative descriptive study involved in-depth interviews and focus groups with older patients with ABC and their care partners, which explored their priorities for care planning and communication with providers, decision-making processes, and valued traits in ABC care. Data were analyzed using thematic analysis. RESULTS: Ten participants attended focus groups or interviews. Seven patients were male and three care partners were female. The mean age was 74. Time since ABC diagnosis ranged from three to seventeen months. Four key themes illustrate participants' priorities in their ABC care as older adults: 1. The significance of key phrasing in communication from oncologists, 2. The need for clear expectation-setting about prognosis and treatment, 3. The role of others in patient care decisions, and 4. Valued traits in care communication. CONCLUSION: Older patients with ABC and their care partners are active participants in their care. Oncologists should prioritize setting clear expectations for treatment, involving family in care planning, and communicating honestly about expected changes to quality of life and functional status.


Assuntos
Oncologistas , Neoplasias da Bexiga Urinária , Idoso , Comunicação , Tomada de Decisões , Feminino , Humanos , Masculino , Qualidade de Vida , Neoplasias da Bexiga Urinária/terapia
17.
J Pain Symptom Manage ; 63(1): 151-159, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34161811

RESUMO

CONTEXT: During the COVID-19 pandemic, community-based research studies experienced prolonged shutdowns unless able to pivot to remote study procedures. OBJECTIVES: To describe the revision of two National Institutes of Health funded community-based palliative-focused clinical trials serving underserved populations to accommodate remote subject enrollment and examine its impact. METHODS: Transitioning to remote processes required multiple protocol and procedural changes including: altering informed consent processes; reducing the number of surveys administered; adding internet access as an inclusion criterion. To understand technological challenges, a screening tool was developed for one study to identify potentially eligible subjects' technology abilities and accessibility. RESULTS: Subjects' limited access to the internet and internet-enabled devices and discomfort with technology led to changes in recruitment patterns. Lack of familiarity with technology increased the amount of time it took research team members and subjects to connect remotely. Patients with significant cognitive and/or sensory deficits were at higher risk of experiencing fatigue during remote study visits leading to streamlining of data collection. A researcher-developed technology screening tool found that potential subjects were not comfortable with videoconferencing through Zoom expressing a preference for phone visits. Reduced travel time made scheduling remote study visits more efficient. CONCLUSION: Future community- and home-based palliative care trials must consider the best way to utilize remote recruitment, enrollment, and data collection processes to increase efficiency and reduce costs. Researchers should consider technology accessibility and train staff to ensure the greatest possible opportunity to recruit underserved populations who have traditionally been underrepresented in research studies.


Assuntos
COVID-19 , Cuidados Paliativos , Ensaios Clínicos como Assunto , Humanos , Pandemias , Inquéritos e Questionários , Estados Unidos , Populações Vulneráveis
18.
Aging Cancer ; 3(2): 105-115, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-36742442

RESUMO

Background: Bladder cancer is one of the top 10 cancers diagnosed in Americans with a median age of 73. This is the patient population that tends to be older with multiple medical conditions, and previously described variability in treatment in the earlier stages of the disease. This study aimed to evaluate the first-line therapeutic choices for older adults newly diagnosed with advanced bladder cancer. In addition, this work evaluated predictors of response as well as the role of events of functional importance in relation to treatment assignment. Methods: A population-based cohort study was conducted using the SEER-Medicare database of patients with advanced stage bladder cancer not eligible for curative intent therapy between 2010 and 2013. Patient groups of interest were compared via univariate and multivariate associations. Additionally, a latent class analysis was applied to identify classes with similar features in reference to events of functional importance-events linked to the maintenance or improvement of physical function status. Results: Within the sample, we noted that a minority of patients received a standard cisplatin-containing regimen (14.77%) and a majority did not receive any chemotherapy (59.69%). Most patients were over age 75. The adjusted odds ratio of no chemo versus cisplatin in patients aged 76 and older compared to patients 66-75 was 6.61 (4.79-9.13; p < 0.0001). We applied latent class analysis methods to the dataset, and three classes demonstrated very low and moderate levels of functional events in the 12 months prior to a person's first outpatient visit for advanced bladder cancer care. Conclusions: Patients with new diagnosis of advanced bladder cancer largely do not receive the recommended first-line systemic therapy of cisplatin chemotherapy, and a significant majority does not receive any treatment. When evaluating the association between class assignment and predictors of chemotherapy use, such as comorbidity and age, patients with "low usage overall" were more likely to receive chemotherapy. Yet even patients who received chemotherapy had some events of functional importance.

19.
J Hosp Palliat Nurs ; 24(5): E226-E232, 2022 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-35666768

RESUMO

Palliative care nurses are key members of the health care team and provide support to patients and their families navigating chronic and life-limiting illness. Financial burden is an issue inherent to chronic illness, yet has not been fully addressed in family caregivers. The purpose of this article is to (1) provide a case study of a family caregiver navigating chronic illness with her daughter and the associated financial and employment consequences and (2) review the nursing ethical, policy, and practice implications of financial burden for family caregivers. The ethical implications of financial burden in family caregivers relate to health equity and health outcomes for both the patient and family caregiver in treatment access and quality. The policy implications include state and federal policies related to caregiver compensation and support and family medical leave. Palliative care nurses play an integral role in addressing caregiver financial burden through assessment, education, referral, and policy support. Family caregivers are essential to the palliative care team, and palliative care nurses have the opportunity to lead initiatives to support the financial well-being of family caregivers in practice, research, and policy settings.


Assuntos
Cuidadores , Estresse Financeiro , Feminino , Humanos , Políticas
20.
J Geriatr Oncol ; 13(8): 1149-1155, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36008271

RESUMO

INTRODUCTION: Previous studies have suggested that frailty among older adults with cancer is associated with a variety of negative outcomes, including greater chemotherapy toxicity and worse survival. However, results often do not include patient-reported outcomes, such as quality of life (QOL). The objective of this study was to evaluate frailty prior to receipt of moderately- or highly-emetogenic chemotherapy and acute changes in QOL in patients at least 65 years of age. It was hypothesized that frail patients would report greater declines in QOL. MATERIALS AND METHODS: Participants completed questionnaires before receiving their first infusion and again five days later. A 59-item deficit accumulation index score was created at baseline using a modified Rockwood frailty index. QOL was assessed using the Functional Assessment of Cancer Therapy-General (FACT-G). The relationship between baseline frailty and QOL was evaluated using a dichotomized deficit accumulation index (frail vs. robust) in repeated measures ANOVA. RESULTS: Study participants (n = 151) had a mean age of 72 (SD = 4.5) and 62% were female. Nearly half (42%) were frail at baseline. Frail participants reported worse QOL at baseline compared to robust participants. Frail patients reported smaller declines in overall and physical (p < 0.0001) and emotional (p = 0.006) QOL from baseline to five days after receiving chemotherapy. At five days, frail participants reported better emotional and physical QOL compared to robust participants. DISCUSSION: Contrary to expectations, frail patients reported smaller declines in QOL compared to robust patients using a deficit accumulation index. These results can be used to help educate frail patients on what to expect during treatment.


Assuntos
Fragilidade , Neoplasias , Humanos , Feminino , Idoso , Masculino , Fragilidade/complicações , Qualidade de Vida/psicologia , Idoso Fragilizado , Avaliação Geriátrica/métodos , Neoplasias/tratamento farmacológico , Neoplasias/complicações
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