2023 Research Round Up: Improving Symptom Tracking and Health Equity in Childhood Cancer

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The theme of the 2023 ASCO Annual Meeting was “Partnering With Patients: The Cornerstone of Cancer Care and Research.” From June 2 to 6 in Chicago, Illinois, and online, cancer researchers and clinicians from around the world gathered to discuss the latest cancer research and how to ensure that all people receive the cancer care they need. In the Research Round Up series, members of the Cancer.Net Editorial Board discuss the most exciting and practice-changing research in their field presented at the meeting and explain what it means for people with cancer. In today’s episode, our guests will discuss new research in symptom tracking and improving health equity in childhood cancer. First, Dr. Fay Hlubocky discusses research on new ways of tracking symptoms in order to improve outcomes in people with cancer. Dr. Hlubocky is a licensed clinical health psychologist with an expertise in psychosocial oncology and a health care ethicist at the University of Chicago. She is also the 2023 Cancer.Net Associate Editor for Psychosocial Oncology. You can view Dr. Hlubocky’s disclosures at Cancer.Net. Dr. Hlubocky: Welcome. I'm very glad that you are able to join us today. My name is Dr. Fay Hlubocky. I am honored to serve as the Cancer.Net Associate Editor for Psychosocial Oncology. I'm a clinical health psychologist specializing in psychosocial oncology at the University of Chicago Medicine. Psychosocial oncology centers on addressing the emotional needs of patients, caregivers, and clinicians from clinical research and educational perspectives. I have no conflicts of interest to report today. Today, we will discuss research on quality cancer care that was presented at the 2023 ASCO Annual Meeting. The theme for this year's meeting selected by the 2022-2023 ASCO President, Dr. Eric Winer, required all attendees to critically examine how interactions between clinicians and patients have changed over the years. “Partnering with Patients: The Cornerstone of Cancer Care and Research” centered on the need to observe what has been improved, what has worsened, and what can be achieved to make interactions between clinicians and patients better. The extraordinary quality and psychosocial care research presented at this meeting honored and fulfilled Dr. Winer's theme. For example, one session centered on the use of novel informatics technology to carry out research and care in the cancer clinical setting. This session, entitled, “Implementing Innovation Informatics-based Technologies to Improve Care Delivery and Clinical Research,” illuminated the current research progress of implementation for emerging information technology innovations in cancer care delivery. This session was designed to help oncologists and cancer care team to evaluate whether and how to integrate these innovations into their own clinical context. One outstanding research presentation was by Dr. Monika Krzyzanowska from Toronto's Princess Margaret Hospital called, “Implementing ePROs in the Real World Oncology Practice,” where she emphasized the importance of not only identifying and monitoring patient-reported outcomes or specific symptom burdens such as pain, fatigue, depression, or anxiety in the clinic, but yet they need to be monitored across the patient's treatment course well into survivorship at different time points, including at home. Therefore, there is a need for a standardized approach of identifying symptoms from patients because as Dr. Krzyzanowska said, patients forget to report even distressing symptoms, and clinicians at times are not always prepared to obtain these symptoms from patients. Historically, in the clinic setting and as patients receive treatment in the chemo suite, we have moved from paper and pencil clinical assessments to the use of robust assessments via electronic medical records systems in both the clinic and subsequently while patients are at home. She reported that more than 10 randomized clinical trials examined the benefits of remote monitoring for patients who undergo mostly systematic therapy with consistent improvements in both symptom control and other outcomes, including survival. She provided very robust real-world and life examples of successful implementation of patient symptom monitoring systems. For example, these have shown consistently that there's a need of improvements in symptom control, but improvement with the other outcomes. To date, she reported on several ongoing initiatives, including a large oncology community practice in Arkansas, who reported on their preliminary initial experiences with an assessment platform of 1,000 patients on systemic therapy who reported symptoms on a weekly basis. This team identified a very high recruitment rate of 79% with amazing retention rate at 88% at 6 months, dropping to about 67% at 12 months. Another real-world implementation example she noted is the work by the National Cancer Institute-funded SIMPRO consortium project, where 6 cancer centers evaluate symptom burdens in 2 different clinical scenarios: patients receiving systematic therapy and patients recovering from surgery. Here, patient data and symptoms are collected via an EMR-based E-system to readily respond to patient needs. The preliminary data and a whole host of research presentation centered on SIMPRO at the Annual Meeting showed that it was feasible, but yet a dynamic design is needed to address any operational and technical barriers for optimal implementation. Ideal partnerships between oncologists, cancer teams, patients, administrators, as well as the IT team is needed for optimal implementation as Dr. Krzyzanowska emphasized. Once these interventions are implemented, a study of sustainability of consistent patient reporting with adequate follow-up by team members, such as nursing, is important for long-term practice success. Finally, she reports that the future research of ePROs evaluation will involve novel approaches, such as clinical teams that will need to gather more complex data, including the use of dynamic approaches, such as wearable technologies, machine learning to address barriers and to improve the overall patient experience. In fact, a specific example of this type of research which reported on both the benefits and barriers centering on ePROs trials at the ASCO Annual Meeting included a very large randomized controlled trial by a Danish team led by Dr. Blechingberg Friis to evaluate the effects of remote symptom monitoring of patients with advanced lung cancer completing induction treatment in a Danish setting. Patients were randomized 1-to-1 to a remote symptom monitoring or an intervention arm added to standard care or just a standard care arm alone. Patients in the intervention arm completed an electronic questionnaire from home covering 13 common symptoms related to lung cancer. A severity alarm or threshold was applied to each question where elevated scores were sent to a clinical nurse for intervention. Weekly compliance to symptom monitoring during that first year was 82% with an intention to monitor population. Although remote monitoring did not significantly improve clinical outcomes for all patients with advanced lung cancer in the Danish population, the benefits were identified for a subgroup of patients not receiving maintenance therapy and for those with a prior organizational experience with ePROs monitoring, which may be essential for improving outcomes of symptom monitoring. In summary, as indicated by the researchers and Dr. Krzyzanowska, more research is needed using these novel approaches to determine the best ePROs platforms for the practice setting. Yet these approaches are critical to improve the overall quality of life of patients, especially during treatment, after surgery, and well into long-term survivorship. In summary, patients should be encouraged to discuss symptom burdens from physical to emotional with their oncology team and to use this technology. It was an honor and pleasure to present this research to you today. Thank you for listening to this brief summary of new research and quality care from the 2023 ASCO Annual Meeting. Best wishes. ASCO: Thank you, Dr. Hlubocky. Next, Dr. Daniel Mulrooney discusses new research on improving health equity in children, adolescents, and young adults with cancer. Dr. Mulrooney is an Associate Member in the Division of Cancer Survivorship at St. Jude Children’s Research Hospital. He is also the 2023 Cancer.Net Associate Editor for Pediatric Cancers. You can view Dr. Mulrooney’s disclosures at Cancer.Net. Dr. Mulrooney: Hello, my name is Dr. Dan Mulrooney from St. Jude Children's Research Hospital. I am the Deputy Director of the After Completion of Therapy Clinic at St. Jude and primarily care for survivors of pediatric cancers. Like previous meetings, the 2023 ASCO Annual Meeting was quite busy and full of research presentations sharing knowledge and advances in cancer treatment and care. Nearly 100 abstracts were presented concerning children with cancer, and these ranged from early studies of new agents to treat relapsed or refractory cancers, some of the most difficult to cure, to molecular profiling of tumors, to late outcome studies characterizing late effects, improved surveillance methods, and potential preventive treatments for adverse effects after cancer therapy. Now, while all of these were particularly exciting to hear and learn about, this year's meeting also had an important focus on addressing equitable cancer care for all children diagnosed with cancer. When a child is ill, it affects the entire family and can be very stressful for all concerned and may especially place a burden on families economically, particularly for those who may live in underserved areas or lack resources when their child is first diagnosed with cancer. Importantly, financial stresses can increase over the course of treatment. And unfortunately, studies have shown that outcomes are inferior for children from low socioeconomic backgrounds compared to those from other, more resource-filled backgrounds, despite the same protocol-driven therapies. Today, I'd like to highlight some of these presentations. Please note, I do not have any relationships to disclose related to any of these studies. A study with the goal of determining the ability to assess social determinants of health in upfront treatment protocols was conducted by the Children's Oncology Group, or COG, a large consortium of pediatric oncology centers that runs national and international trials to advance the treatment of children with cancer. Historically, the COG was only collecting information on race, ethnicity, insurance, and ZIP code. Collecting information on household material hardship may provide information that might be addressed and modified and help improve the treatment of children with cancer. However, before this study, it was not clear if parents would be willing to share this information with their child's treatment team. Investigators asked parents of children newly diagnosed with neuroblastoma and enrolling on the COG study ANBL1531 to complete a survey about where they live, their household income, and their access to stable food, housing, utilities, and transportation, which were called “measures of household material hardship.” Investigators also asked about access to social supports. The surveys were administered with paper and pencil and in the primary language of the participant. 360 of 413 eligible participants, or 87%, opted to complete the survey across 101 different treating sites. 89% of the surveys were completed within 11 days of enrollment. Most participants answered all of the questions. In fact, less than 1% left some questions unanswered. Importantly, nearly one-third of participants reported having household material hardship, of which 55% reported a single insecurity around food, housing, utilities, or transportation. And 45% reported multiple hardships in these domains. These investigators are planning to extend this work and evaluate associations with cancer outcomes in the hopes of better understanding the mechanisms of these disparities and developing interventions to address these issues in future COG studies. This study raised important issues about what can be done to improve or minimize household material hardship for families of children with cancer. In a pilot study conducted by the same study group at the Dana-Farber Cancer Institute and in collaboration with the University of Alabama, investigators studied the feasibility of a randomized intervention providing transportation and groceries to low-income pediatric oncology families. To be eligible, participants had to be less than 18 years of age at diagnosis of cancer and living in a household that screened positive for food, housing, utility, and/or transportation insecurity, the measures of household material hardship, and those who would be receiving at least 4 courses of chemotherapy. Participants were treated at the Dana-Farber Cancer Institute or the University of Alabama between May 2019 and August 2021, and were randomized to receive the intervention called PediCARE, which provided transportation and groceries versus usual care, and this was conducted over a 6-month period. The main outcome was to test the feasibility of the intervention. Would families participate? And the secondary outcome was to assess what proportion of recipients successfully received the intervention and if they found it acceptable. The total of 40 families agreed to participate and be randomized, and none dropped out of the study. All completed surveys at baseline and at the 6-month follow-up period, suggesting that the intervention was feasible, could be successfully delivered, and was acceptable to families. Now another study from the large Childhood Cancer Survivors Study, or CCSS, assessed the association between the expansion of Medicaid under the Affordable Care Act, or ACA, and Medicaid enrollment among childhood cancer survivors. These investigators linked data from over 13,000 5-year childhood cancer survivors to Medicaid insurance data across the years of 2010 to 2016. Survivors were adults, ages 18 to 64 years old, and all had been diagnosed with cancer prior to age 21 years, between the years of 1970 and 1999. The analyses were adjusted for age, sex, race, ethnicity, income, education, and chronic health conditions. The primary aim for these researchers was to determine any Medicaid enrollment for greater than 1 month in the year. They found that Medicaid enrollment rates increased in states that expanded Medicaid coverage from 17.6% pre-expansion to 24% post-expansion, compared to those states that did not expand pre-expansion and 16.9% post-expansion. Adjusting for other factors, the net enrollment increase was 6.6 percentage points. In the expansion states, the increase was greatest among survivors of leukemia and non-Hodgkin's lymphoma. It was also greater among non-Hispanic Black and Hispanic survivors compared to non-Hispanic White survivors and among those with lower household incomes or a high school degree or less. These investigators now plan to look at associations between Medicaid access and health care utilization and long-term cancer outcomes, such as chronic health conditions and mortality. And additionally, a small study from Stanford University reported a partnership with a community-based nonprofit organization [Jacob’s Heart] to improve cancer center-based follow-up for Latinx adolescent and young adult cancer survivors, or AYA survivors. These investigators conducted interviews in the participants' preferred language, with cancer survivors, their parents, and staff from the community organization. They were able to identify important themes around unmet needs for this population, such as challenges with obtaining health care and understanding which providers to see for which health issues, an oncologist or primary care provider, uncertainty about what questions to ask these providers, difficulty adjusting to life after treatment, and understanding the late effects of cancer on the whole family, economically and mentally. For example, issues with parental job loss, financial strain, or impacts on other siblings in the home. However, these investigators also found supportive themes such as gratitude, strength, and support. Addressing these barriers is important for families and communities to promote follow-up after cancer treatment. This study was particularly unique because of its ability to successfully partner with a community organization to reach out and provide opportunities to improve care for Latinx AYA cancer survivors. The studies highlighted here and presented at this year's ASCO Annual Meeting focused on identifying barriers to equitable care for all children diagnosed with cancer and has laid the groundwork for future investigations to address these issues for children and families during treatment as well as after treatment and during survivorship. Thank you for listening to this brief summary of some of the exciting and novel research in pediatric oncology presented at the 2023 ASCO Annual Meeting. ASCO: Thank you, Dr. Mulrooney. You can find more research from recent scientific meetings at www.cancer.net. Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care. And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.