Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers, their tasks, psychosocial needs and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and by consequence, their caregivers, warrant increased attention to the roles and demands of caregiving. This paper reviews current evidence presented in a two-day meeting to examine the state of the science of informal cancer caregiving convened by the National Cancer Institute and National Institute for Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This paper offers recommendations for moving science forward in four areas: (1) improve estimation of the prevalence and burden of informal cancer caregiving; (2) advance development of interventions designed to improve outcomes in cancer patients, caregivers, and patient-caregiver dyads; (3) generate and test strategies to integrate caregivers into formal healthcare settings; and (4) promote use of technology to support informal cancer caregivers.
Consistent with national prevalence statistics among adults, breast, prostate, and lung cancer were the most common cancer diagnoses presenting to the ED. Pneumonia was the most common reason for adult cancer-related ED visits with an associated high inpatient admission rate. This analysis highlights cancer-specific ED clinical presentations and the opportunity to inform patient and system-directed prevention and management strategies.
The aim of this study was to determine the effect of problem-solving education on self-efficacy and distress in informal caregivers of allogeneic hematopoietic stem cell transplantation patients. Patient/caregiver teams attended three 1-hour problem-solving education sessions to help cope with problems during hematopoietic stem cell transplantation. Primary measures included the Cancer Self-Efficacy Scale–transplant and Brief Symptom Inventory–18. Active caregivers reported improvements in self-efficacy (p < 0.05) and distress (p < 0.01) post-problem-solving education; caregiver responders also reported better health outcomes such as fatigue. The effect of problem-solving education on self-efficacy and distress in hematopoietic stem cell transplantation caregivers supports its inclusion in future interventions to meet the multifaceted needs of this population.
Cardiotoxicity resulting from direct myocyte damage has been a known complication of cancer treatment for decades. More recently, the emergence of hypertension as a clinically significant side effect of several new agents has been recognized as adversely affecting cancer treatment outcomes. With cancer patients living longer, in part because of treatment advances, these adverse events have become increasingly important to address. However, little is known about the cardiovascular pathogenic mechanisms associated with cancer treatment and even less about how to optimally prevent and manage short- and long-term cardiovascular complications, leading to improved patient safety and clinical outcomes. To identify research priorities, allocate resources, and establish infrastructure required to address cardiotoxicity associated with cancer treatment, the National Cancer Institute (NCI) and National Heart, Lung and Blood Institute (NHLBI) sponsored a two-day workshop, "Cancer treatment-related cardiotoxicity: Understanding the current state of knowledge and future research priorities," in March 2013 in Bethesda, MD. Participants included leading oncology and cardiology researchers and health professionals, patient advocates and industry representatives, with expertise ranging from basic to clinical science. Attendees were charged with identifying research opportunities to advance the understanding of cancer treatment-related cardiotoxicity across basic and clinical science. This commentary highlights the key discussion points and overarching recommendations from that workshop.
Background Allogeneic hematopoietic stem cell transplantation (HSCT) generates multiple problems that vary in complexity and create significant distress for both patients and their caregivers. Interventions that address patient and caregiver distress during allogeneic HSCT have not been tested. Objective To evaluate the feasibility of conducting an individualized dyadic problem-solving education (PSE) intervention during HSCT and estimate a preliminary effect size on problem-solving skills and distress. Intervention/Methods: The PSE intervention consisted of four sessions of the Prepared Family Caregiver PSE model. Data were collected with an interventionist log, subject interviews and standardized questionnaires. Results Of the thirty-four adult dyads screened, twenty-four were ineligible primarily due to non-English speaking (n=11) and inconsistent caregivers (n=10). Ten dyads (n=20) were enrolled and eight dyads (n=16) completed the intervention. Of the thirty-one sessions, 29 were completed (94%). Worsening patient condition was the primary reason for sessions to be incomplete. Patients attended 90% of the sessions; caregivers attended 74%. Reasons for missed sessions included patient symptom distress and limited caregiver availability. Dyads reported being very satisfied (4.8±0.61; range 1–5) stating “an opportunity to talk” and “creative thinking” were most beneficial. Conclusion Results suggest that dyads can participate in PSE during HSCT and view it as beneficial. Participants identified the active process of solving problems as helpful. Implications for Practice Targeted interventions that promote effective, meaningful behaviors are needed to guide patients and caregivers through HSCT. Future research recommendations include: testing a version of PSE with fewer sessions, including spousal and non-spousal caregivers and those who are non-English speaking.
To identify research priorities and appropriate resources and to establish the infrastructure required to address the emergency care of patients with cancer, the National Institutes of Health’s National Cancer Institute and the Office of Emergency Care Research sponsored a one-day workshop, “Cancer and Emergency Medicine: Setting the Research Agenda,” in March 2015 in Bethesda, MD. Participants included leading researchers and clinicians in the fields of oncology, emergency medicine, and palliative care, and representatives from the National Institutes of Health. Attendees were charged with identifying research opportunities and priorities to advance the understanding of the emergency care of cancer patients. Recommendations were made in 4 areas: the collection of epidemiologic data, care of the patient with febrile neutropenia, acute events such as dyspnea, and palliative care in the emergency department setting.
IMPORTANCE Representative enrollment in clinical trials is critical to ensure equitable and effective translation of research to practice, yet disparities in clinical trial enrollment persist. OBJECTIVE To examine person-level factors associated with invitation to and participation in clinical trials. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional study analyzed responses from 3689 US adults who participated in the nationally representative Health Information National Trends Survey, collected February through June 2020 via mailed questionnaires. EXPOSURES Demographic, clinical, and health behavior-related characteristics. MAIN OUTCOMES AND MEASURES History of invitation to and participation in a clinical trial, primary information sources, trust in information sources, and motives for participation in clinical trials were described. Respondent characteristics are presented as absolute numbers and weighted percentages. Associations between respondent demographic, clinical, and health behavior-related characteristics and clinical trial invitation and participation were estimated using survey-weighted logistic regression models. RESULTS The median (IQR) age of the 3689 respondents was 48 (33-61) years, and most were non-Hispanic White individuals (2063 [59%]; non-Hispanic Black, 452 [10%]; Hispanic, 521 [14%]), had more than a high school degree (2656 [68%]), were employed (1809 [58%]), and had at least 1 medical condition (2535 [61%]). Overall, 439 respondents (9%) had been invited to participate in any clinical trial. Respondents with increased odds of invitation were non-Hispanic Black comparedwith non-Hispanic White (adjusted odds ratio [aOR], 1.85; 95% CI, 1.13-3.02), had greater than a high school education compared with less than high school education (eg, Նcollege degree: aOR, 4.84; 95% CI, 1.89-12.39), were single compared with married or living as married (aOR, 1.68; 95% CI, 1.04-2.73), and had at least 1 medical condition compared to none (eg, 1 medical condition: aOR, 2.25; 95% CI, 1.32-3.82). Respondents residing in rural vs urban areas had 77% decreased odds of invitation to a clinical trial (aOR 0.33; 95% CI 0.17-0.65). Of invited respondents, 199 (47%) participated. Compared with non-Hispanic White respondents, non-Hispanic Black respondents had 72% decreased odds of clinical trial participation (aOR, 0.28; 95% CI, 0.09-0.87). Respondents most frequently reported "health care providers" as the first and most trusted source of clinical trial information (first source: 2297 [59%]; most trusted source: 2597 [70%]). The most frequently reported motives for clinical trials participation were "wanting to get better" (2294 [66%]) and the standard of care not being covered by insurance (1448 [41%]). CONCLUSIONS AND RELEVANCEThe findings of this study suggest that invitation to and participation in clinical trials may differ by person-level demographic and clinical characteristics. (continued) Key Points Question What person-level factors are associated with US adults' invitation to and participation ...
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