“It's Rougher on Me Than It Is on Him”: Family Caregiver–Generated and Prioritized Illness Concerns While Patients Undergo Cancer Treatments

PURPOSE: Research eliciting patients' illness concerns has typically focused later in the cancer continuum, rather than during cancer treatments. Family caregiver concerns are overlooked during this time. Less is known about how patients and caregivers prioritize concerns during cancer treatments, which holds potential for improving supportive oncology care (ie, primary palliative care). The purpose of this study was to elicit and compare which domains of supportive oncology are of highest importance to patients and caregivers during cancer treatments. METHODS: Freelisting, a cognitive anthropology method, was used to elicit concerns in order of importance. Freelist data were analyzed using Smith's salience index. Qualitative interviews were conducted with a caregiver subsample to add explanatory insights. RESULTS: In descending order, pain, death, fear, family, and awful were salient Freelist items for patients (n = 65), whereas sadness, time-consuming, support, anger, tired, death, and frustration were salient for caregivers (n = 24). When integrated with supportive oncology domains, patients' concerns reflected a prioritization of the physical (pain) and emotional (death, fear, and awful) domains, with less emphasis on social (family) aspects. Caregivers' prioritized the emotional (sadness, anger, death, and frustration) and social (time-consuming and support) domains, with less emphasis on the physical (tired) aspects. CONCLUSION: Our findings suggest that enhancing primary palliative care delivery by oncology teams requires systems thinking to support both the patient and caregiver as the primary unit of care. Primary palliative care may be improved by prioritizing interventions that address physical concerns among patients as well as key social concerns among caregivers to support the complex caregiving role while patients undergo cancer treatments.

Supportive oncology care at home intervention for patients with pancreatic cancer.

155 Background: Patients with pancreatic cancer receiving chemotherapy often experience substantial symptoms and high healthcare utilization. We sought to determine the feasibility of delivering a Supportive Oncology Care at Home intervention designed to address the needs of patients receiving treatment for pancreatic cancer. Methods: We prospectively enrolled patients with pancreatic cancer who were participating in a parent trial of neoadjuvant FOLFIRINOX and residing in-state, within 50 miles of our hospital. Patients received the Supportive Oncology Care at Home intervention during neoadjuvant treatment (i.e., up to 4 months). The intervention entailed: 1) remote monitoring of daily patient-reported symptoms, daily vital signs, and weekly body weight; 2) a hospital in the home care model for symptom assessment and management; and 3) structured communication with the oncology team. We defined the intervention as feasible if ≥60% of patients enrolled in the study and ≥60% completed the daily assessments within the first two weeks of enrollment. We tracked numbers of phone calls, emails, and home visits generated by the intervention. We conducted exit interviews with patients, caregivers, and oncology clinicians to assess the acceptability of the intervention. We also compared rates of treatment delays, urgent clinic visits, emergency room (ER) visits, and hospitalizations among those who did (n = 20) and did not (n = 24) receive Supportive Oncology Care at Home from the parent trial. Results: From 1/2019-9/2020, we enrolled 80.8% (21/26) of potentially eligible patients. One patient became ineligible following consent due to moving out-of-state, resulting in 20 participants (median age = 67 years [range 55-77]; 60.0% female). In the first two weeks of enrollment, 65.0% of participants completed all daily assessments. Overall, patients reported 96.1% of daily symptoms, 96.1% of daily vital signs, and 92.5% of weekly body weights. Each participant generated an average of 2.22 phone calls (range 0.62-3.77), 2.96 emails (range 1.50-5.88), and 0.15 home visits (range 0-0.69) per week. During exit interviews, > 80% of patients, caregivers, and clinicians found the intervention to be helpful and convenient, and they reported high satisfaction with the communication among patients, clinicians, and the hospital in the home team. Patients receiving the intervention had lower rates of treatment delays (55.0% v 75.0%), urgent clinic visits (10.0% v 25.0%), ER visits or hospitalizations (45.0% v 62.5%), as well as a lower proportion of days spent in urgent clinic, ER, or hospital (2.7% v 7.8%), compared with those not receiving the intervention who were in the same parent trial. Conclusions: These findings demonstrate the feasibility and acceptability of a Supportive Oncology Care at Home intervention. Future work will investigate the efficacy of this intervention for decreasing healthcare use and improving patient outcomes. Clinical trial information: NCT03798769.

Supportive oncology care at home intervention for patients with pancreatic cancer.

6558 Background: Patients with pancreatic cancer receiving chemotherapy often experience substantial symptoms and high healthcare utilization. We sought to determine the feasibility of delivering a Supportive Oncology Care at Home intervention designed to address the needs of patients receiving treatment for pancreatic cancer. Methods: We prospectively enrolled patients with pancreatic cancer who were participating in a parent trial of neoadjuvant FOLFIRINOX and residing in-state, within 50 miles of our hospital. Patients received the Supportive Oncology Care at Home intervention during neoadjuvant treatment (i.e., up to 4 months). The intervention entailed: 1) remote monitoring of daily patient-reported symptoms, daily vital signs, and weekly body weight; 2) a hospital in the home care model for symptom assessment and management; and 3) structured communication with the oncology team. We defined the intervention as feasible if ≥60% of patients enrolled in the study and ≥60% completed the daily assessments within the first two weeks of enrollment. We tracked numbers of phone calls, emails, and home visits generated by the intervention. We conducted exit interviews with patients, caregivers, and oncology clinicians to assess the acceptability of the intervention. In addition, we compared rates of treatment delays, urgent clinic visits, emergency room (ER) visits, and hospitalizations among those who did (n = 20) and did not (n = 24) receive Supportive Oncology Care at Home from the parent trial. Results: From 1/2019-9/2020, we enrolled 80.8% (21/26) of potentially eligible patients. One patient became ineligible following consent due to moving out-of-state, resulting in 20 participants (median age = 67 years [range 55-77]; 60.0% female). Within the first two weeks of enrollment, 65.0% completed all the daily assessments, with participants reporting 96.1% of daily symptoms, 96.1% of daily vital signs, and 92.5% of weekly body weights. Each participant generated an average of 2.22 phone calls (range 0.62-3.77), 2.96 emails (range 1.50-5.88), and 0.15 home visits (range 0-0.69) per week. During exit interviews, > 80% of patients, caregivers, and clinicians found the intervention to be helpful and convenient, and they reported high satisfaction with the communication among patients, clinicians, and the hospital in the home team. Patients receiving the intervention had lower rates of treatment delays (55.0% v 75.0%), urgent clinic visits (10.0% v 25.0%), ER visits or hospitalizations (45.0% v 62.5%), as well as a lower proportion of days spent in urgent clinic, ER, or hospital (2.7% v 7.8%), compared with those not receiving the intervention who were in the same parent trial. Conclusions: These findings demonstrate the feasibility and acceptability of a Supportive Oncology Care at Home intervention. Future work will investigate the efficacy of this intervention for decreasing healthcare use and improving patient outcomes. Clinical trial information: NCT03798769.

Where are we and where to go for supportive cancer care in China? A national survey of patients and healthcare providers

This study aimed to make a comprehensive, nationwide survey of supportive care for cancer patients in China. Two sets of questionnaires, one for medical professionals and one for patients, were distributed. Responses were received from 12,686 medical care personnel and 11,172 patients or their family representatives from 34 provinces. It was found that only about one-fourth of caregivers felt they had much knowledge about oncology supportive care, and nearly 10% admitted to having little or no knowledge. Multidisciplinary teams for supportive care were more often available in tertiary hospitals (19.9%) than in non-tertiary hospitals (15.4%) (p < 0.05). Pain was the most common patient concern; however, pain treatment was only the fifth most common therapy administered by health care providers. Patient concerns were more often subjective (pain, economic burden, appearance, and sexual dysfunction), whereas caregiver treatments were more often directed at objective concerns (nutrition and adverse reactions to treatment regimens). Patients reported that they received no guidance or guidance only when they proposed it for psychological (25%), physical exercise (15%), nutrition (40%), or spiritual (40%-65%) needs. We conclude that the concept of supportive care is widely accepted and implemented throughout China. However, gaps exist in caregiver knowledge about supportive oncology care, the use of multidisciplinary teams, especially in non-tertiary hospitals, and the interventions between what caregivers give and what patients subjectively need. Improvements in caregiver education in supportive oncology care and the delivery of care are needed.

Resource and reimbursement barriers to comprehensive cancer care (CCC) delivery: An association of community cancer centers (ACCC) survey research analysis.

31 Background: CCC delivery is recommended in guidelines, required by accreditation bodies, and essential for high-quality cancer management. Barriers, such as insufficient reimbursement and lack of specialist staff, prevent consistent access to and delivery of CCC, particularly supportive oncology services. Challenges especially persist in community programs, where access to philanthropy and similar funding is limited. ACCC conducted a representative survey of its member programs to elucidate capacity and barriers to CCC delivery in the community/academic setting in order to inform policy and value-based payment reform. Methods: Survey development methodology included item generation with expert review, iterative piloting and cognitive interviews to achieve content and internal validity. An online survey was piloted at the ACCC 2018 Annual Meeting and sent to member programs via email link. The final survey included 22 questions on availability and funding for supportive services. Twenty-seven supportive oncology services were assessed for availability, reasons not offered, reimbursement/funding and patient payment. Analyses were conducted with SAS. Results: 172 of 704 ACCC member programs responded and completed the majority of survey as of 10/7/19. Despite a high proportion of programs offering supportive oncology services, gaps between cost and reimbursement were present for all (Table). Deficits in reimbursement are compensated by patient out-of-pocket payments, grants and donations. Most centers report needing more staffing in psychology (61%), social work (60%), navigation (59%), nutrition (57%), palliative care (56%), genetic counseling (52%), and financial counseling (53%). Gaps were observed regardless of region or practice type. Conclusions: There is a lack of sufficient reimbursement, staffing, and budget to provide CCC across the U.S., regardless of region or practice type. Oncology care models and reimbursement policies must include CCC services to optimize delivery of care.

Resource and reimbursement barriers to comprehensive cancer care (CCC) delivery: An Association of Community Cancer Centers (ACCC) survey research analysis.

2075 Background: CCC delivery is recommended in guidelines, required by accreditation bodies, and essential for high-quality cancer management. Barriers, such as insufficient reimbursement and lack of specialist staff, prevent consistent access to and delivery of CCC, particularly supportive oncology services. Challenges especially persist in community programs, where access to philanthropy and similar funding is limited. ACCC conducted a representative survey of its member programs to elucidate capacity and barriers to CCC delivery in the community/academic setting in order to inform policy and value-based payment reform. Methods: Survey development methodology included item generation with expert review, iterative piloting and cognitive interviews to achieve content and internal validity. An online survey was piloted at the ACCC 2018 Annual Meeting and sent to member programs via email link. The final survey included 22 questions on availability and funding for supportive services. Twenty-seven supportive oncology services were assessed for availability, reasons not offered, reimbursement/funding and patient payment. Analyses were conducted with SAS. Results: 172 of 704 ACCC member programs responded and completed the majority of survey as of 10/7/19. Despite a high proportion of programs offering supportive oncology services, gaps between cost and reimbursement were present for all (Table). Deficits in reimbursement are compensated by patient out-of-pocket payments, grants and donations. Most centers report needing more staffing in psychology (61%), social work (60%), navigation (59%), nutrition (57%), palliative care (56%), genetic counseling (52%), and financial counseling (53%). Gaps were observed regardless of region or practice type. Conclusions: There is a lack of sufficient reimbursement, staffing, and budget to provide CCC across the U.S., regardless of region or practice type. Oncology care models and reimbursement policies must include CCC services to optimize delivery of care. [Table: see text]

Integrating spiritual care into an ambulatory cancer center.

205 Background: Spiritual care is identified as a core component of quality oncologic care. Unmet spiritual needs can lead to worse quality of life, lower satisfaction with care, and greater psychological distress. Despite increasing evidence that cancer outpatients also have unmet spiritual needs, professional spiritual care is often limited in the ambulatory setting. Many cancer centers provide access to professional chaplains only while patients are hospitalized. Where chaplain services are available to outpatients, access is often limited. At Mount Sinai, we embedded a full-time professional chaplain in our ambulatory cancer center. This presentation will describe our methods, results, and conclusions from a year of data on outpatient spiritual care referrals. Methods: We identified three sources of referrals to spiritual care: direct referrals from patients’ primary oncology teams, direct referrals from Supportive Oncology/Palliative Care, and automatic referrals through a question about meaning and purpose on our distress screen. We also included the opportunity for patients to self-refer to spiritual care through our distress screen. We collected data on the number of patients identified through these referral sources, time to initial contact, and the validity of the referral as assessed by our chaplain. Results: These three sources resulted in 454 referrals to spiritual care. We screened 1,410 patients through our distress screen and 16% (226) triggered a referral to spiritual care. Distress screen referrals comprised nearly 50% of all spiritual care referrals. In addition, 32% (144) of our referrals came from the patients’ clinical teams and 10% (46) from the Supportive Oncology team. Our chaplain assessed that 31% (141) had a spiritual need that required regular follow-up and 12% (56) required monitoring. Conclusions: Using multiple referral methods we were able to identify a significant number of ambulatory cancer patients with an identified spiritual need. Future projects will look at specific metrics for patient experience, improving chaplain ability to connect with patients, validating our screening question for spiritual distress, and determining an appropriate patient load for an outpatient chaplain.

Multi-institution quality improvement in supportive oncology: Results of the Coleman Supportive Oncology Collaborative (CSOC).

33 Background: The Institute of Medicine and Commission on Cancer recommend systematic delivery of supportive oncology care for cancer patients. The CSOC is focused on quality improvement (QI) of supportive care across Chicago cancer centers (Weldon ASCO ’17). Supportive oncology includes distress, practical, family, physical, nutrition, pain, fatigue and care concerns. To support QI, cross-institution teams developed unique, relevant tools, methods, care delivery processes, patient handouts and online training. Methods: Ten centers (5 academic, 1 VA, 1 public, 2 safety net, 1 community) implemented supportive oncology screening and care delivery quality improvements. Centers collected data for relevant Quality Oncology Practice Initiative (QOPI) metrics. Analyses used simple frequencies and Fishers exact test. Results: Five of six QOPI measures were improved at statistically significant levels from 2014 to 2017, p < .00001. Improvements are more modest in 2016 & 2017 as 4 of the centers started this QI in 2017. Conclusions: The CSOC achieved significant improvements in supportive oncology screening and identifying and addressing patients’ needs and concerns. Additional work is needed to improve these measures to achieve the best quality of cancer care possible for every patient based on their needs and concerns. [Table: see text]

Discussing Oncology Massage Research: an Interview with Danielle Gentile, PhD

This interview introduces the Journal’s readers to a new massage therapy researcher, Danielle Gentile, PhD, who is a Health Services Researcher and Assistant Professor of Medicine in the Depart-ment of Supportive Oncology at the Levine Cancer Institute for Atrium Health in Charlotte, North Carolina. Dr. Gentile’s research focuses on social media in health care, integrative oncology, and the effects of integrative modalities—including mas-sage therapy—on pain in patients with cancer. In the interview, Dr. Gentile describes what excites her about the field of massage therapy and how she integrates massage therapists into her research.