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1.
Adapt Phys Activ Q ; 41(3): 402-419, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38710491

RESUMO

This study explored the classification experiences and views of Para Alpine skiers with visual impairment. Data from 11  interviews were analyzed using reflexive thematic analysis to generate three themes: Suitability-The skiers questioned the suitability of the visual measurements, testing environment, and the information they received regarding classification; Exclusivity-Skiers felt certain aspects of the system remain exclusive due to the restrictions of sport classes and lack of the athlete voice; and (Dis)trust-Skiers felt distrust in those implementing the system and in other athletes due to intentional misrepresentation. Speculation surrounding this resulted in the skiers' feeling doubt in their own classification. While there is not a "one size fits all" approach to classification, understanding skiers' experiences can be a vital first step and will help to guide future research into the evolution of this sport's classification.


Assuntos
Esqui , Humanos , Masculino , Feminino , Adulto , Entrevistas como Assunto , Esportes para Pessoas com Deficiência/classificação , Pessoa de Meia-Idade , Paratletas/classificação , Transtornos da Visão/classificação , Atletas/classificação , Atletas/psicologia , Pessoas com Deficiência Visual , Confiança , Adulto Jovem
2.
Cancer Causes Control ; 34(12): 1123-1132, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37505316

RESUMO

PURPOSE: There is an increasing awareness of the importance of patient engagement in cancer research, but many basic and translational researchers have never been trained to do so. To address this unmet need, a 1-year patient engagement training program for researchers was developed. METHODS: Eleven researchers and eleven paired research advocates participated. This program, designed for virtual delivery, included 3 didactic modules focused on (1) Community Outreach and Engagement principles and methods, (2) Communication skills, and (3) Team Science. This was followed by longitudinal projects to be completed by the researcher/advocate pairs, including learning about the research project, and co-authoring abstracts, manuscripts and grant proposals. Monthly group meetings allowed pairs to share their experiences. The program culminated in the pairs creating and presenting oral abstracts for the University of Kansas Cancer Center's Annual Research Symposium. RESULTS: All participants indicated that the modules had a positive impact on their ability to collaborate in research. Both researcher self-evaluations and patient advocate evaluations of their researcher partner showed an improvement in researcher communication competency. Results from the Patient Engagement in Research Scale showed that advocates were highly engaged. Within 1 year after program completion, participating pairs have completed four abstracts and 9 grant proposals. CONCLUSION: The program will be modified based on participant feedback, and can be adapted for future cohorts if an increased number of sessions per month and shortened program duration are desired. The program's virtual format allows scalability across institutions to potentially benefit large cohorts of researchers.


Assuntos
Neoplasias , Pesquisadores , Humanos , Pesquisadores/educação , Projetos de Pesquisa , Neoplasias/terapia , Relações Comunidade-Instituição
3.
Support Care Cancer ; 30(1): 535-542, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34333699

RESUMO

PURPOSE: This article reports findings from a demonstration project funded by the Center for Medicare and Medicaid Innovation (CMMI). The purpose of the project was to test a supportive care program on the outcomes of quality of care and quality of life, and costs in patients with advanced cancer. METHODS: The project was conducted between February 2015 and February 2018, enrolling adult, Medicare or Medicaid beneficiaries with advanced or progressed solid tumor malignancy. A comparative longitudinal comparison of the program with both a concurrent control and an historic control was used to evaluate outcomes. The intervention included routine electronic biopsychosocial screening, early access to specialty palliative care, and nurse care coordination. Quality of life, aggressiveness of care, and healthcare utilization were measured. RESULTS: A total of 1340 people were enrolled, with 71% of the total sample being Caucasian; 41.4% had stage IV cancer, and 20% utilized Medicaid only. Significant differences in the enrolled patients and the comparison group were controlled for through statistical analysis. There were significantly fewer ED visits, unplanned admissions, and fewer total hospitalization days in the intervention group. In the last 30 days of life, hospital and ICU admissions were less and a greater proportion of patients were enrolled in hospice in the intervention group. Quality of life had a marked improvement for enrolled patients. Average cost per member per month was not less in the enrolled group. CONCLUSION: This pragmatic demonstration project confirmed the clinical benefits of an integration of supportive care for patients with advanced cancer, although no reduction in costs was found.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Qualidade de Vida , Idoso , Humanos , Medicaid , Medicare , Cuidados Paliativos , Estados Unidos
4.
Support Care Cancer ; 28(11): 5139-5146, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32060703

RESUMO

INTRODUCTION: The ability of oncologists to understand patients' goals of care is recognized as a key component of quality care. The purpose of this study is to examine the influence of patient-oncologist agreement regarding goals of care upon aggressive care at end of life (EOL) for patients with advanced cancer. METHODS: Patients with advanced cancer and their oncologists were interviewed at study enrollment and every 3 months thereafter until patient death or end of the study period (15 months). A 100-point visual analogue scale was used to represent goals of care, with quality of life (scored as 0) and survival (scored as 100) as anchors. Strong goal of care agreement for survival was defined as oncologist and patient dyadic goal of care scores that fell between 70 and 100 (100 = highest goal for survival) and for comfort, dyadic goal of care values that fell between 0 and 30 (0 = high goal for comfort). RESULTS: Two hundred and six patients and eleven oncologists provided data. At the last interview prior to death, 23.3% of dyads had strong goal of care agreement for either survival (8.3%) or comfort (15%) and 76.7% had no strong agreement. There was a significant association between aggressive care use and categories of dyadic agreement regarding goals of care (p = 0.024, Cramer's V = 0.15). CONCLUSIONS: A large percentage of oncologists did not understand their patients' EOL goals of care. While aggressive care aligned with categories of dyadic agreement for goals of care, high rates of aggressive care were reported.


Assuntos
Neoplasias/psicologia , Neoplasias/terapia , Oncologistas/psicologia , Preferência do Paciente , Relações Médico-Paciente , Assistência Terminal/métodos , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Planejamento de Assistência ao Paciente , Qualidade da Assistência à Saúde , Qualidade de Vida
5.
Qual Life Res ; 29(7): 1999-2005, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32108302

RESUMO

PURPOSE: The purpose of this study was to examine the psychometric properties of a single-item visual analog scale (VAS) to measure goals of care in patients with advanced cancer. METHODS: Data were obtained from 378 patients with diagnoses of advanced lung, gastrointestinal, or pancreatic cancer. Goal of care was measured at baseline and every 3 months until patient death or completion of the 15-month study period. A single-item VAS ranging from 0 (quality of life is all that matters) to 100 (length of life is all that matters) was used to measure patients' goals of care for all study subjects; a subsample of subjects also completed the Quality of Life-Length of Life scale which asked patients to select categories of preferences. Test-retest reliability (intra-class correlation) and construct validity (known-groups, convergent, divergent) were evaluated. RESULTS: At 9 and 12 months, the test-retest reliability for patients with stable symptoms (n = 107) was established with the ICC(1,3) = 0.81, p < .001. Known-groups (r = 0.99, p < .001), convergent (r = 0.78, p < .001), and divergent (r = .06, p = 0.24) validity all demonstrated evidence of good construct validity. CONCLUSIONS: Preliminary psychometric testing for a single-item VAS that measures goals of care in a sample of patients with advanced cancer met standard requirements for reliability and validity. While further testing with a larger sample size is recommended, the tool's use in the clinical area to assess cancer patients' goals of care is appropriate. Such a tool could facilitate goals of care discussions in the clinical area.


Assuntos
Neoplasias Gastrointestinais/psicologia , Neoplasias Pulmonares/psicologia , Neoplasias Pancreáticas/psicologia , Planejamento de Assistência ao Paciente , Psicometria/métodos , Escala Visual Analógica , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Neoplasias Gastrointestinais/terapia , Humanos , Neoplasias Pulmonares/terapia , Masculino , Pessoa de Meia-Idade , Neoplasias Pancreáticas/terapia , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Adulto Jovem
6.
Appl Nurs Res ; 54: 151301, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32650885

RESUMO

PURPOSE: We aimed to (1) describe the amount of treatment burden experienced in the primary care population diagnosed with chronic conditions and (2) examine if cumulative and task-specific treatment burden were predictors of medication, exercise, and dietary adherence in patients diagnosed with chronic conditions. DESIGN: We conducted a prospective, descriptive, cross-sectional study. METHODS: We enrolled 149 men and women from a single primary care clinic. Participants completed self-report surveys with data collected between September 2019 and December 2019. Our primary statistical analyses consisted of multivariate regression modeling. RESULTS: The sample experience a moderate amount of treatment burden (M = 38.22; SD = 31.83). We found strong, negative correlations between both cumulative and task-specific burden in relation to medication, exercise, and dietary adherence (p < .001). Significant multivariate models (p < .001), controlling for sample demographics, demonstrated cumulative treatment burden predicted medication adherence, whereas task-specific burden predicted medication, exercise, and dietary adherence outcomes, with model effect sizes ranging from moderate (0.20) to large (0.54). CONCLUSIONS: Results demonstrate higher levels of cumulative and task-specific treatment burden predict medication, exercise, and dietary adherence within a sample diagnosed with various chronic conditions. These findings indicate the potential for using treatment burden screening in the clinical setting to identify individuals at risk for poor self-management adherence. Treatment burden screening also enables the provider to determine areas of high burden affecting self-management adherence in order to design an effective treatment plan using targeted interventions, resources, or education to reduce patient burden in order to improve adherence.


Assuntos
Atenção Primária à Saúde , Autogestão , Estudos Transversais , Feminino , Humanos , Masculino , Adesão à Medicação , Estudos Prospectivos
7.
Res Nurs Health ; 42(4): 256-263, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31119765

RESUMO

Distance caregivers (DCGs) represent a growing demographic. The emotional burden of caregiving for a family member with cancer is amplified by the logistical challenges of providing support from afar. DCGs feel higher levels of distress, anxiety, and depression compared with local caregivers. Videoconference technology may alleviate both the emotional and practical burdens faced by DCGs. This is an ongoing randomized controlled trial in 32 outpatient ambulatory clinics at a large, urban, comprehensive cancer center. To date, 332 patient-DCG dyads have been enrolled. DCGs must have internet access and have been identified by the patient as a source of support. The intervention period is 4 months. DCGs are randomized to one of three arms: DCGs in Arm 1 receive four coaching sessions with an advanced practice nurse or social worker and four videoconference appointments during the oncologist-patient office visit. DCGs in Arm 2 participate in four videoconference appointments with the oncologist and patient, and Arm 3 is the control group, which receives access to information through a website. Primary outcome variables are DCG distress, anxiety, depression, burden, self-efficacy, and emotional support. These data are collected electronically at baseline, 4 months, and 6 months. Patient distress, anxiety, and depression are also assessed at these same intervals using brief in-person interviews. The change in each of the DCG outcomes over time will be examined by a repeated measures analysis of covariance.


Assuntos
Cuidadores/educação , Cuidadores/psicologia , Neoplasias/enfermagem , Neoplasias/psicologia , Qualidade de Vida/psicologia , Telemedicina/métodos , Comunicação por Videoconferência , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ohio , Inquéritos e Questionários
8.
J Intensive Care Med ; 33(10): 557-566, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-27872409

RESUMO

RATIONALE: Despite multiple trials of interventions to improve end-of-life care of the critically ill, there is a persistent lack of understanding of factors associated with barriers to decision-making at the end of life. OBJECTIVE: To apply the principles of complexity science in examining the extent to which transitions to end-of-life care can be predicted by physician, family, or patient characteristics; outcome expectations; and the evaluation of treatment effectiveness. METHODS: A descriptive, longitudinal study was conducted in 3 adult intensive care units (ICUs). Two hundred sixty-four family surrogates of patients lacking decisional capacity and the physicians caring for the patients were interviewed every 5 days until ICU discharge or patient death. MEASUREMENTS: Characteristics of patients, physicians, and family members; values and preferences of physicians and family; and evaluation of treatment effectiveness, expectations for patient outcomes, and relative priorities in treatment (comfort vs survival). The primary outcome, focus of care, was categorized as (1) maintaining a survival orientation (no treatment limitations), (2) transitioning to a stronger palliative focus (eg, some treatment limitations), or (3) transitioning to an explicit end-of-life, comfort-oriented care plan. MAIN RESULTS: Physician expectations for survival and future cognitive status were the only variables consistently and significantly related to the focus of care. Neither physician or family evaluations of treatment effectiveness nor what was most important to physicians or family members was influential. CONCLUSION: Lack of influence of family and physician views, in comparison to the consistent effect of survival probabilities, suggests barriers to incorporation of individual values in treatment decisions.


Assuntos
Estado Terminal/psicologia , Estado Terminal/terapia , Tomada de Decisões , Família/psicologia , Médicos/psicologia , Assistência Terminal/psicologia , Adulto , Idoso , Tomada de Decisão Clínica , Feminino , Humanos , Unidades de Terapia Intensiva , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Prognóstico , Análise de Sistemas
9.
West J Nurs Res ; 46(1): 19-25, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37981723

RESUMO

Aggressive end-of-life care in patients with advanced cancer is associated with poor experiences and outcomes. The purpose of the study was to examine the impact of aggressive end-of-life care on caregiver satisfaction for caregivers of bereaved advanced cancer patients. Data of 101 caregivers were gathered using a longitudinal, descriptive correlational design study. Postdeath interviews were conducted 2 months after the patient's death. The most common end-of-life care indicators were patient not enrolled in hospice or enrolled within 3 days of death, >1 hospitalization, and intensive care unit admission. More than one-third of patients received at least one of the aggressive end-of-life care indicators in the last 30 days of life. From the multiple linear regression analyses, patient intensive care unit admission and having more than one hospitalization significantly affected caregiver satisfaction with care. Understanding caregiver satisfaction with care may improve the clinical practice of nurses who have crucial role in patients' end-of-life care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Humanos , Cuidadores , Satisfação do Paciente , Neoplasias/terapia , Satisfação Pessoal
10.
Digit Health ; 10: 20552076241228403, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38343587

RESUMO

Objective: Healthcare consumers and providers are increasingly turning to digital solutions, such as curated websites. Knowing who accesses/benefits from these may improve design and development. This study investigated website usage of informal caregivers of people with multiple sclerosis and shifts in outcome plausibly associated with usage. Methods: Secondary analysis of data from a randomized clinical trial of 148 caregivers compared effectiveness of a website + tele-coaching to a website only intervention for caregivers. Groupwise differences in means/proportions were tested using t-tests and chi-square. Modified Poisson regression with a robust variance estimator and ordinal logistic regression tested the relationship between group and likelihood of website log-in. Ordinal logistic regression models examined whether caregiver characteristics were associated with website use. Generalized estimating equations (GEE) with an autoregressive correlation structure modeled the relationship between website usage and outcomes. Results: Females were more likely to access the website than males (60% vs. 43%; p = 0.05). Though not statistically significant, a possible association (POR: .85, 95% CI: .69, 1.03) between caregiver burden and website access emerged; caregivers experiencing highest levels of burden appeared less likely to engage. Usage patterns differed by treatment arm: the website-only group accessed the Caring for yourself topic significantly more (61.67% vs. 38.33%: p = .04) with similar, but insignificant, trends for other topics. Conclusions: Clinicians can be confident referring females with moderate levels of burden to website-based interventions. By contrast, male caregivers and those experiencing high levels of burden may be less likely to access these resources, pointing to the need for alternative interventions. Trial Registration: Clinicaltrials.gov, registration number: NCT0466208.

11.
J Geriatr Oncol ; 15(2): 101706, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38320468

RESUMO

INTRODUCTION: Despite mounting consensus that end-of-life (EOL) care for patients with cancer should focus on improving quality of life, many patients continue to receive aggressive, disease-oriented treatment until death. Within this group, patients with increased frailty may be at higher risk of adverse treatment-related outcomes. We therefore examined the relationship between degree of frailty and receipt of aggressive EOL care among Medicare-insured patients with cancer in Ohio. MATERIALS AND METHODS: From the Ohio Cancer Incidence Surveillance System (OCISS) linked with Medicare claims, we identified patients diagnosed with breast, colorectal, lung, or prostate cancer who died between 2012 and 2016. Frailty was operationalized using a validated claims-based frailty index. Six quality indicators reflecting receipt of aggressive EOL care were identified from claims: (1) any cancer-directed treatment, (2) >1 emergency department (ED) visit, (3) >1 hospital admission, (4) any intensive care unit (ICU) admission in the last 30 days of life, (5) entry to hospice in the last three days of life, and (6) in-hospital mortality. Multivariable logistic regression analysis was performed to control for demographic factors, Medicare and Medicaid dual enrollment, and cancer type and stage in the relationship between frailty and aggressive EOL care. RESULTS: Overall, 31,465 patients met selection criteria. Patients with moderate/severe frailty were less likely than non-/pre-frail patients to receive any aggressive EOL care (adjusted odds ratio [aOR] 0.92 [95% confidence interval 0.86-0.99]). This group was also less likely to undergo cancer-directed treatment in their last 30 days or to enter hospice in their last three days. Increasing frailty was associated with lower odds of admission to the ICU in the last 30 days of life (mild frailty: aOR 0.88 [0.83-0.94]; moderate/severe frailty: aOR 0.85 [0.78-0.92]) or of dying in-hospital (mild frailty: 0.85 [0.79-0.91]; moderate/severe frailty: aOR 0.74 [0.67-0.82]), but higher odds of having >1 ED visit in the last 30 days of life (mild frailty: aOR 1.43 [1.32-1.53]; moderate/severe frailty: aOR 1.61 [1.47-1.77]). DISCUSSION: These findings suggest the need for more explicit discussion of emergency care seeking for patients with cancer at the end of life.


Assuntos
Fragilidade , Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Masculino , Humanos , Idoso , Estados Unidos , Qualidade de Vida , Idoso Fragilizado , Fragilidade/epidemiologia , Medicare , Neoplasias/terapia , Estudos Retrospectivos
12.
Palliat Med Rep ; 5(1): 127-135, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38560743

RESUMO

Background: There is a dearth of studies evaluating the utility of reporting prognostication among nursing home (NH) residents with cancer. Objective: To study factors associated with documented less than six-month prognosis, and its relationship with end-of-life (EOL) care quality measures among residents with cancer. Methods: The Surveillance, Epidemiology, and End Results linked with Medicare, and the Minimum Data Set databases was used to identify 20,397 NH residents in the United States with breast, colorectal, lung, pancreatic, or prostate cancer who died between July 2016 and December 2018. Of these, 2205 residents (10.8%) were documented with less than six-month prognosis upon NH admission. Main outcomes were more than one hospitalization, more than one emergency department visit, and any intensive care unit admission within the last 30 days of life as aggressive EOL care markers, as well as admission to hospice, receipt of advance care planning and palliative care, and survival. Specificity and sensitivity of prognosis were assessed using six-month mortality as the outcome. Propensity score matching adjusted for selection biases, and logistic regression examined association. Results: Specificity and sensitivity of documented less than six-month prognosis for mortality were 94.2% and 13.7%, respectively. Residents with documented less than six-month prognosis had greater odds of being admitted to hospice than those without (adjusted odds ratio: 3.27, 95% confidence interval: 2.86-3.62), and lower odds to receive aggressive EOL care. Conclusion: In this cohort study, documented less than six-month prognosis was associated with less aggressive EOL care. Despite its high specificity, however, low sensitivity limits its utility to operationalize care on a larger population of residents with terminal illness.

13.
Palliat Support Care ; 11(5): 389-96, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23182431

RESUMO

OBJECTIVE: Little is known about relationships between patient spiritual well-being and caregiver outcomes for those with advanced cancer. We were interested in examining the relationship between patient physical quality of life (QOL) and caregiver depression and to also evaluate whether patient spiritual well-being (SWB) played a mediating role in this relationship. METHOD: This is a prospective longitudinal study that was conducted in the outpatient clinics at a university-affiliated comprehensive cancer center. 226 patients with Stage III or IV cancer (lung, GI, GYN) and their primary caregivers were interviewed upon enrollment into the study and three months later. Measures of spirituality, health-related quality of life, and physical functioning were included in the interviews. RESULTS: Key findings were that the relationship between patient physical QOL and caregiver depression was inverse and moderate (ß = -0.24, p = 0.004) and that patient SWB (meaning/peace) played a significant (p = 0.02) and medium-size role (ß = -0.31) in mediating the relationship between patient physical QOL and caregiver depression. The nature of these relationships was stable over time. SIGNIFICANCE OF RESULTS: Patients' spirituality is central to their coping and adjusting to cancer. It is this aspect of patient overall quality of life that mediates the relationship to caregiver well-being. The most potent intervention for caregiver depression may be attending to patient spiritual distress.


Assuntos
Depressão/psicologia , Relações Interpessoais , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Espiritualidade , Adaptação Psicológica , Adulto , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Neoplasias/enfermagem , Cuidados Paliativos/métodos , Estudos Prospectivos
14.
Int J MS Care ; 25(3): 93-98, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37250193

RESUMO

BACKGROUND: Caregivers of persons with multiple sclerosis (MS) report high levels of distress. The National Comprehensive Cancer Network Distress Thermometer (DT) is used extensively with patients with cancer and their caregivers but has not been tested in nononcology caregivers. The purpose of this study was to examine the psychometric properties and clinical utility of the barometer portion of the DT in caregivers of persons with MS. METHODS: A secondary analysis was performed of data from a randomized trial comparing the effectiveness of 2 interventions aimed at reducing psychological outcomes associated with caregiving. The DT and the 4-item Patient-Reported Outcomes Measurement Information System Anxiety and Depression scales, which were administered at baseline, were used for all analyses. Construct validity (known groups) and convergent validity (interscale correlations) were evaluated. Receiver operating characteristic curve analysis was used to evaluate clinical diagnostic test evaluation. RESULTS: The DT had good construct validity supported by strong correlations for known-groups analyses and good convergent validity (r = 0.70-0.72). The DT also demonstrated good discrimination for anxiety (area under the curve [AUC] = 0.83) and depression (AUC = 0.80). The optimal screening cut point on the DT was 4 for anxiety and 5 for depression. CONCLUSIONS: The barometer portion of the DT demonstrates good psychometric properties and clinical utility in caregivers of persons with MS. This is the first examination of the DT in MS care partners.

15.
Int J MS Care ; 25(6): 252-258, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37969909

RESUMO

BACKGROUND: Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS. METHODS: From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention. RESULTS: A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (P = .037) and the stress subscale score (P = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores. CONCLUSIONS: Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.

16.
J Clin Transl Sci ; 7(1): e178, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37654779

RESUMO

The University of Kansas Cancer Center (KU Cancer Center) initiated an engagement program to leverage the lived experience of individuals and families with cancer. KU Cancer Center faculty, staff, and patient partners built an infrastructure to achieve a patient-designed, patient-led, and research-informed engagement program called Patient and Investigator Voices Organizing Together (PIVOT). This special communication offers an engagement roadmap that can be replicated, scaled, and adopted at other cancer centers and academic health systems. PIVOT demonstrates that collaboration among academic leaders, investigators, and people with a lived experience yields a patient-centered, vibrant environment that enriches the research enterprise.

17.
JAMA Netw Open ; 6(2): e230394, 2023 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-36811860

RESUMO

Importance: Nearly 10% of the 1.5 million persons residing in nursing homes (NHs) have received or will receive a diagnosis of cancer. Although aggressive end-of-life (EOL) care is common among community-dwelling patients with cancer, little is known about such patterns of care among NH residents with cancer. Objective: To compare markers of aggressive EOL care between older adults with metastatic cancer who are NH residents and their community-dwelling counterparts. Design, Setting, and Participants: This cohort study used the Surveillance, Epidemiology, and End Results database linked with the Medicare database and the Minimum Data Set (including NH clinical assessment data) for deaths occurring from January 1, 2013, to December 31, 2017, among 146 329 older patients with metastatic breast, colorectal, lung, pancreas, or prostate cancer, with a lookback period in claims data through July 1, 2012. Statistical analysis was conducted between March 2021 and September 2022. Exposures: Nursing home status. Main Outcomes and Measures: Markers of aggressive EOL care were cancer-directed treatment, intensive care unit admission, more than 1 emergency department visit or more than 1 hospitalization in the last 30 days of life, hospice enrollment in the last 3 days of life, and in-hospital death. Results: The study population included 146 329 patients 66 years of age or older (mean [SD] age, 78.2 [7.3] years; 51.9% men). Aggressive EOL care was more common among NH residents than community-dwelling residents (63.6% vs 58.3%). Nursing home status was associated with 4% higher odds of receiving aggressive EOL care (adjusted odds ratio [aOR], 1.04 [95% CI, 1.02-1.07]), 6% higher odds of more than 1 hospital admission in the last 30 days of life (aOR, 1.06 [95% CI, 1.02-1.10]), and 61% higher odds of dying in the hospital (aOR, 1.61 [95% CI, 1.57-1.65]). Conversely, NH status was associated with lower odds of receiving cancer-directed treatment (aOR, 0.57 [95% CI, 0.55-0.58]), intensive care unit admission (aOR, 0.82 [95% CI, 0.79-0.84]), or enrollment in hospice in the last 3 days of life (aOR, 0.89 [95% CI, 0.86-0.92]). Conclusions and Relevance: Despite increased emphasis to reduce aggressive EOL care in the past several decades, such care remains common among older persons with metastatic cancer and is slightly more prevalent among NH residents than their community-dwelling counterparts. Multilevel interventions to decrease aggressive EOL care should target the main factors associated with its prevalence, including hospital admissions in the last 30 days of life and in-hospital death.


Assuntos
Hospitais para Doentes Terminais , Segunda Neoplasia Primária , Neoplasias , Assistência Terminal , Masculino , Humanos , Idoso , Estados Unidos , Idoso de 80 Anos ou mais , Criança , Feminino , Estudos de Coortes , Incidência , Mortalidade Hospitalar , Medicare , Assistência Terminal/métodos , Neoplasias/terapia , Casas de Saúde
18.
J Am Geriatr Soc ; 71(11): 3546-3553, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37515440

RESUMO

BACKGROUND: Studies examining end-of-life (EOL) care in older cancer patients are scarce, and prior studies have not accounted for gradients of cognitive impairment (COG-I). We examine EOL care patterns across COG-I gradients, hypothesizing that greater COG-I severity is associated with lower odds of receiving aggressive EOL care. METHODS: Using data from the linked Surveillance Epidemiology and End Results (SEER) -Medicare -Minimum Data Set (MDS) 3.0, we identified patients with nursing facility stays (NFS) and who died with metastatic cancer from 2013 to 2017. Markers of aggressive EOL care were: cancer-directed treatment, intensive care unit admission, >1 emergency department visit, or >1 hospitalization in the last 30 days of life, hospice enrollment in the last 3 days of life, and in-hospital death. In addition to descriptive analysis, we conducted multivariable logistic regression analysis to evaluate the independent association between COG-I severity and receipt of aggressive EOL care. RESULTS: Of the 40,833 patients in our study population, 49.2% were cognitively intact; 24.4% had mild COG-I; 19.7% had moderate COG-I; and 6.7% had severe COG-I. The percent of patients who received aggressive EOL care was 62.6% and 74.2% among those who were cognitively intact and those with severe COG-I, respectively. Compared with cognitively intact patients, those with severe COG-I had 86% higher odds of receiving any type of aggressive EOL care (adjusted odds ratio (aOR): 1.86 (95% confidence interval: 1.70-2.04)), which were primarily associated with higher odds of in-hospital death. The odds of in-hospital death associated with severe COG-I were higher among those with short- than with long-term stays (aOR:2.58 (2.35-2.84) and aOR:1.40 (1.17-1.67), respectively). CONCLUSIONS: Contrary to our hypothesis, aggressive EOL care in older metastatic cancer patients with NFS was highest among those suffering severe COG-I. These findings can inform the development of interventions to help reduce aggressive EOL care in this patient population.


Assuntos
Disfunção Cognitiva , Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Humanos , Idoso , Estados Unidos/epidemiologia , Mortalidade Hospitalar , Medicare , Assistência Terminal/métodos , Neoplasias/terapia , Neoplasias/psicologia , Casas de Saúde , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/terapia , Estudos Retrospectivos
19.
Crit Care Med ; 40(2): 461-7, 2012 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-21963580

RESUMO

OBJECTIVE: To examine the frequency with which quality of life and treatment limitation were discussed in formal family meetings for long-stay intensive care unit patients with high risk for mortality and morbidity. DESIGN: Descriptive observational study. SETTING: Five intensive care units. PATIENTS: One hundred sixteen family surrogate decisionmakers of long-stay intensive care unit patients who participated in an intensive communication system that aimed to provide weekly meetings with family decisionmakers. The structure of each meeting was to address medical update, patient preferences, treatment plan, and milestones for evaluating the treatment plan. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We audiotaped initial family meetings for 116 family decisionmakers for a total of 180 meetings. On average, meetings were 24 mins long with a majority of time being devoted to nonemotional speech and little (12%) spent discussing patient preferences. Quality of life was discussed in 45% and treatment limitation in 23% of all meetings. Quality-of-life discussions were more likely to occur when patients were admitted to a medical intensive care unit (odds ratio [OR] 5.9; p = .005), have a family decisionmaker who is a spouse (OR 9.4; p = .0001), were older (OR 1.04; p = 01), have a shorter length of stay (OR 0.93; p = .001), and have a family decisionmaker who was a spouse (OR 5.1; p = .002). For those with a treatment limitation discussion, 67% had a do-not-resuscitate order, 40% were admitted to a medical intensive care unit, 56% had a family decisionmaker who had been their caregiver, and 48% of their family decisionmakers were their children. CONCLUSIONS: To guide discussion with families of the subset of intensive care unit patients with high risk of mortality and long-term morbidity, quality of life was not consistently addressed. Continued efforts to assist clinicians in routinely including discussions of quality-of-life outcomes is needed.


Assuntos
Comunicação , Tempo de Internação , Planejamento de Assistência ao Paciente/organização & administração , Relações Profissional-Família , Qualidade de Vida , Cuidados Críticos/métodos , Estado Terminal/mortalidade , Estado Terminal/terapia , Estudos Transversais , Tomada de Decisões , Feminino , Humanos , Unidades de Terapia Intensiva , Modelos Logísticos , Assistência de Longa Duração , Masculino , Imperícia , Avaliação das Necessidades , Razão de Chances , Medição de Risco , Resultado do Tratamento , Estados Unidos
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