Faculty Opinions recommendation of Perspectives on Palliative Care in Cancer Clinical Trials: Diverse Meanings from Multidisciplinary Cancer Care Providers.

Author(s):  
Betty Ferrell
2018 ◽  
Vol 21 (5) ◽  
pp. 616-621 ◽  
Author(s):  
Michelle A. Mollica ◽  
Erin E. Kent ◽  
Kathleen M. Castro ◽  
Erin M. Ellis ◽  
Rebecca A. Ferrer ◽  
...  

2008 ◽  
Vol 26 (27) ◽  
pp. 4458-4465 ◽  
Author(s):  
Julie Lemieux ◽  
Pamela J. Goodwin ◽  
Kathleen I. Pritchard ◽  
Karen A. Gelmon ◽  
Louise J. Bordeleau ◽  
...  

Purpose It is estimated that only 5% of patients with cancer participate in a clinical trial. Barriers to participation may relate to available protocols, physicians, and patients, but few data exist on barriers related to cancer care environments and protocol characteristics. Methods The primary objective was to identify characteristics of cancer care environments and clinical trial protocols associated with a low recruitment into breast cancer clinical trials. Secondary objectives were to determine yearly recruitment fraction onto clinical trials from 1997 to 2002 in Ontario, Canada, and to compare recruitment fraction among years. Questionnaires were sent to hospitals requesting characteristics of cancer care environments and to cooperative groups/pharmaceutical companies for information on protocols and the number of patients recruited per hospital/year. Poisson regression was used to estimate the recruitment fraction. Results Questionnaire completion rate varied between 69% and 100%. Recruitment fraction varied between 5.4% and 8.5% according to year. More than 30% of patients were diagnosed in hospitals with no available trials. In multivariate analysis, the following characteristics were associated with recruitment: use of placebo versus not (relative risk [RR] = 0.80; P = .05), nonmetastatic versus metastatic trial (RR = 2.80; P < .01), and for nonmetastatic trials, protocol allowing an interval of 12 weeks or longer versus less than 12 weeks (from diagnosis, surgery, or end of therapy) before enrollment (RR = 1.36; P < .01). Conclusion Allowable interval of 12 weeks or longer to randomly assign patients in clinical trials could help recruitment. In our study, absence of an available clinical trial represented the largest barrier to recruitment.


2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 84-84
Author(s):  
Taro Tomizuka ◽  
Tomone Watanabe ◽  
Satoru Kamitani ◽  
Takahiro Higashi

84 Background: To improve coordination of cancer care between cancer specialist hospitals and primary care providers (PCPs), the Japanese government accredited cancer specialist hospitals, so called “designated cancer care hospitals (DCCHs)” and introduced “Cancer care coordination instruction fee” which PCPs can receive if they share a cancer critical path (Japanese version of Survivorship Care Plans) of each cancer patient with DCCHs. We sought to assess the current status of coordination of cancer care in Japan and communication between DCCHs and PCPs from PCPs’ point of view. Methods: A cross-sectional mail survey was administered to randomly selected clinic-based PCPs (4,000 clinics) from a nation-wide database of medical institutions authorized by Ministry of Health, Labour and Welfare Japan to treat patients with health insurance (87,869 clinics). The survey evaluated how much PCPs provided cancer follow-up care and how well DCCHs coordinated care and communicated with PCPs in cancer survivorship. Results: 1,873 PCPs returned the questionnaire (response rate: 46.8%). 1,223 (65.3%) answered to provide cancer follow-up care in outpatient setting. Most of the PCPs which provided cancer follow-up care evaluated the care coordination and support by DCCHs were satisfactory (946, 77.4%) but the degree of good evaluation varied by region (highest: 91.3%, lowest: 45.8%). In regression analysis, provision of palliative care by PCPs (OR 1.52 95%CI 1.05-2.17) and use of cancer critical path (OR 2.10 95%CI 1.63-2.71) were significantly correlated with better evaluation of communication and care coordination. Conclusions: DCCHs communicated well with PCPs and PCPs were satisfied with the communication and care coordination by DCCHs. Provision of palliative care by PCPs and use of cancer critical path are likely to lead good care coordination in cancer care.


2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 145-145
Author(s):  
Maria Cristina Dans ◽  
Kunuz Abdella ◽  
Dinah Baah-Odoom ◽  
Rinty Kintu ◽  
Israel Kolawole ◽  
...  

145 Background: The National Comprehensive Cancer Network (NCCN) is a not-for-profit alliance of 27 leading cancer centers in the United States (US), but the NCCN’s mission to improve cancer care extends world-wide. Nearly half of the registered users of the NCCN Guidelines are based outside the US, and the NCCN has developed a process for adapting its Guidelines to lower-resourced settings. The cancer burden in Sub-Saharan Africa (SSA) is significant – by 2030, annual cancer deaths in the region are projected to reach 1,000,000 people – and most cancers diagnosed in SSA are late-stage. Methods: The NCCN Framework outlines a rational approach for constructing cancer management systems to provide the highest achievable care. Each of the 4 NCCN Framework levels builds on the one before it, so care can evolve as resources grow: “Basic Resources” are essential for care; “Core Resources” add services improving disease outcomes; and “Enhanced Resources” include more cost-prohibitive services. The Guidelines themselves are the final level: evidence-based, consensus-driven recommendations from each NCCN Panel. Resource-stratification begins with modification of the Guidelines by a NCCN Framework Committee within each Panel. Results: In the case of SSA, organizers from the NCCN, American Cancer Society, Clinton Health Access Initiative, and IBM arranged 3 consensus meetings in which resource-stratified drafts of the Guidelines for Palliative Care and Cancer Pain will be refined by a committee of NCCN representatives, oncologists, and palliative care providers from Burundi, Ethiopia, Ghana, Kenya, Nigeria, Uganda, and the US. Important themes emerging from the first meeting included early screening for palliative care needs, even before tissue diagnosis, in areas with limited availability of anti-cancer therapy. In addition, cultural differences on the topic of “Physician-Aid-in-Dying” led to its replacement with guidance on caring for patients expressing a wish to die. Conclusions: Collaboration with colleagues in SSA, and other areas around the globe, to resource-stratify NCCN Guidelines will allow more systematic use of the guidelines and improve the quality, effectiveness, and efficiency of cancer care.


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 139-139
Author(s):  
Ryan David Nipp ◽  
Elizabeth Powell ◽  
Beverly Moy

139 Background: Cancer clinical trials often enroll patients with advanced cancer, yet trial participation should not preclude the appropriate use of palliative care (PC) services for these patients. We sought to describe rates and correlates of PC consultation in clinical trial patients and identify factors associated with use of PC. Methods: We prospectively collected data on patient characteristics and rates of PC consultation among all patients enrolled in cancer clinical trials at Massachusetts General Hospital in 2014. We used multiple logistic regression with purposeful selection of covariates to identify factors associated with PC consultation. Results: Of 1,218 clinical trial patients (mean age = 58 years; 643 (53%) female), 781 (64%) were married and 851 (70%) had metastatic disease. All cancer types were represented, but hematologic cancers (21%) were most common. Of those who had tumor genotype testing, 340 (62%) had a somatic mutation. Overall, 177 (15%) received PC consultation. Of those with metastatic disease, 149 (18%) received a PC consult. Metastatic disease, being unmarried, and absence of a somatic tumor mutation correlated with receipt of a PC consult. Conclusions: We found that a minority of cancer clinical trial patients receive PC consultation. Having metastatic disease and being unmarried correlated with receipt of PC consultation, thus highlighting a population likely needing additional supportive care. Presence of a somatic mutation was inversely associated with receiving PC consultation, suggesting that disease biology may impact patients’ supportive care needs or presence of these mutations influences clinician decisions about the need for PC services. These data help identify the factors associated with appropriate use of PC, and add to our understanding about the use of these services in cancer clinical trial patients. [Table: see text]


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13504-e13504
Author(s):  
Izumi Okado ◽  
Ian Pagano ◽  
Jessica Rhee ◽  
Jeffrey L. Berenberg ◽  
Randall F. Holcombe

e13504 Background: Effective coordination of care (CC) is a critical component of high-quality cancer care; however, many patients with cancer continue to receive poorly coordinated care. CC experiences among therapeutic clinical trial (CT) participants are relatively unknown. We examined cancer patients’ perceptions of CC among CT participants using a validated Care Coordination Instrument (CCI). Methods: The study sample (N = 90) consisted of 45 CT participants and 45 matched non-participants from archival data from our prior CC studies. 171 patients who participated in therapeutic cancer clinical trials through the Hawaii Minority/Underserved NCI Community Oncology Research Program (NCORP) between 2015 and 2020 were contacted for study participation, and 26% completed the CCI. The CCI measures overall perceptions of CC and across 3 domains (Communication, Navigation, Operational). Paired t-tests were used to compare overall and domain scores between CT participants and non-participants. The two groups were matched by age, gender, cancer type (breast, GI, other), and clinical stage. Results: Among CT participants, the mean age was 61.7 ( SD = 9.4), and the majority were female (67%) and Asian (56%). The most common cancer types were breast (27%) and GI (16%), with 24% with stage III disease. CT participants reported significantly higher total CC scores than non-participants (62.5 vs. 55.8; p = .0008). Similar trends were found for Navigation ( p = .007) and Operational ( p = .001) domain scores. 29% of CT participants reported receiving high-intensity CC assistance from their clinical research associates (CRAs), and 27% indicated receiving moderate-level CC assistance. Responses to open-ended questions regarding CC revealed that CT participants received assistance with a variety of CC activities from their CRAs, including scheduling appointments and explaining test results and procedures. Conclusions: Patients who participate in therapeutic cancer clinical trials report more positive perceptions of CC compared to non-participants. Qualitative data suggest that significant care coordination support is provided by the clinical research associate. The results underscore the importance of CC support provided by CRAs who may be an unrecognized component of the healthcare delivery team. CC provided by CRAs may contribute to improved quality and value of cancer care for patients enrolled on therapeutic clinical trials.


2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e17514-e17514
Author(s):  
M. Michaels ◽  
N. Blakeney ◽  
L. Schapira ◽  
A. Britton ◽  
L. Swords ◽  
...  

e17514 Background: While nearly 20% of adult cancer patients are eligible for cancer clinical trials, less than 3% of cancer patients participate. Rates of participation are lower among communities of color and the medically underserved. Enhanced community engagement and provider training about cancer clinical trials can potentially result in greater awareness, access, and ultimately, patient accrual. Methods: A three-year Pilot Education Program was developed to explore the impact and feasibility of a community-driven outreach and education intervention focusing on community members, community health care providers, and cancer researchers in three medically underserved communities. Using a train-the-trainer model, PEP sought to raise clinical trial awareness among peers and encourage public inquiries about clinical trials. Workshops for clinical trials staff addressed recruitment and retention practices. Additionally, community sites worked to reduce local policy barriers to clinical trials participation.PEP used web-based surveys, interviews, focus groups and field observation to evaluate impact. Results: Seventy-five trainers were recruited. PEP reached 882 community members (63% minority), 374 health care providers (16% minority) and 61 cancer clinical trial staff. Approximately 5,800 individuals were exposed to educational activities through extended community outreach activities and dissemination of educational materials. Among those completing evaluation surveys, 66% of community leader trainees said they spoke to others about cancer clinical trials. Seventy-two percent of health care providers agreed their role is to inform patients about the possibility of receiving treatment through a clinical trial. Among cancer clinical trial staff, 80% indicated intention to work with community groups on cancer clinical trials education. Seventy-seven unique patient profiles were created with a national cancer clinical trials matching service also associated with PEP. Conclusions: Results from ENACCT's Pilot Education Program suggest promise in improving knowledge among community leaders and health care providers, and fostering greater peer-to-peer education about cancer clinical trials. [Table: see text]


2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 95-95
Author(s):  
Christa Marie Braun-Inglis ◽  
Leigh Boehmer ◽  
Laura J Zitella ◽  
Brianna Hoffner ◽  
Jessica Rhee ◽  
...  

95 Background: Oncology Advanced Practitioners (APs), including Nurse Practitioners, Physician Assistants, Clinical Nurse Specialists, and Pharmacists are highly trained health care providers that contribute significantly to quality cancer care. Given low clinical trial enrollment among adult oncology patients, understanding current research responsibilities of APs could lead to identification of opportunities to leverage this workforce to enhance accrual and conduct of clinical trials. Methods: A 65-item validated survey addressing attitudes, beliefs and responsibilities of oncology APs participating in clinical research was distributed from January 22 through March 6, 2020. Outreach via the Association of Community Cancer Centers (ACCC) and Harborside was utilized to reach a sample set of 14,601 oncology APs’ emails. The survey was administered and data were analyzed using Survey Monkey. Results: 408 U.S. oncology APs completed the survey. Respondents were primarily white (83%), female (92%) and nurse practitioners (71%). Thirty-five percent practiced in an academic setting and 62% practiced in a community setting. Nearly all respondents believed that clinical trials are important to improve oncology care standards and more than 90% reported that clinical trials were available at their practice. Nearly 80% reported that they are comfortable discussing treatment options with patients, discussing clinical trials in general, and know where to find clinical trials. Furthermore, 80% participate in the care of patients enrolled on clinical trials. Only 60%, however, are comfortable discussing trials available at their practice and only 38% routinely explore whether a clinical trial is available for their patients. While 70% of APs approach eligible patients about clinical trials at their practice, only 20% reported doing so “a great deal” or “a lot”. Ninety percent of APs reported that they should play a role in clinical research and 75% would like to be more involved in the clinical trial process. Barriers to greater involvement in clinical trials include lack of time, inadequate awareness of clinical trial specifics, and under-representation on research committees. Conclusions: The majority of oncology APs are engaged and interested in clinical trials and believe that research is important to improve cancer care. However, they are not being utilized to their full scope. Multidisciplinary team integration, trials-related education, and policy change is needed to allow this group of skilled professionals to realize their full potential within cancer clinical trials.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24088-e24088
Author(s):  
M. Tezer Kutluk ◽  
Fahad Ahmed ◽  
Mustafa Cemaloğlu ◽  
Burca Aydin ◽  
Meltem Sengelen ◽  
...  

e24088 Background: Palliative care is patient and family-centered care provided to optimize the quality of life in serious illness, and is an essential health service under Universal Health Coverage. Given the burden of cancer and other chronic disease diseases along with demographic changes, the need for palliative care is growing in Turkey. This study aimed to review of the available scientific literature on palliative cancer care needs, models and outcomes Turkey. Methods: A comprehensive literature review was conducted with English and Turkish keywords in PubMed, Scopus, Embase, ScienceDirect, Web of Science, Google Scholar, The Turkish Academic Network and Information Centre databases, Turkish Ministry of Health documents, Turkish Council of Higher Education’s doctoral thesis, and renowned national and international palliative care as well as cancer conferences 01/ 2000 to 07/ 2020. Results: Out of 27489 papers identified, 320 met the criteria for inclusion. The main focus of these studies was; historical development in palliative care, legislative regulation, professional training, use of opioids, symptom management, care for patients, palliative care centers, public awareness, psychosocial support, and end of life ethics. The majority of this literature used descriptive design, although a few case-control, cohort, and randomized control trials were also found. Our analysis showed that the development of PC in Turkey can be divided into three period. The first (early initiatives, before 2000), the second (dissemination phase, 2000-2010), and the third stage (government & societial engagement, after 2010). Several studies also analyzed the barriers such as low public & professional awareness, disconnection from cancer care, the opioidfobia and the lack of trained palliative care providers. The lack of integration of palliative care to cancer care is a major challenge for palliative care implementation. Conclusions: This review presents the evidence of the significant progress in PC during the last 20 years and the opportunities for further progress. Bringing research into practice is needed for shaping the integration of palliative care to cancer care in Turkey. The stakeholders and policy makers should not neglect the need for PC under the current pressure of COVID-19 pandemic on health and economy.


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