Annual Report 2021

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When we closed out the year at the end of 2020, we'd held onto the promise that the new year would be easier than the prior one.Instead, we found ourselves continuing to grapple with the effects of the global pandemic on many aspects of our lives.
Despite the challenges, several bright spots emerged.The availability of vaccines allowed us to resume in-person care, supplemented where necessary, by telehealth.Slowly, we returned to in-person work-mostly in a hybrid The program has four main components: 1. Clinical care (described below) 2. Research that seeks to improve the care and/or health-related quality of life for AYAs 3. Training of medical providers in the care of AYAs/survivorship 4. Education & outreach to connect with the AYA cancer community The long-term follow up clinical care provided is based on a Survivorship Care Plan.
Each patient receives a cumulative Treatment Summary (at their introductory appointment) and a detailed Care Plan which outlines recommended specialty referrals/testing to monitor and/or manage health effects that may result from cancer or cancer treatment (updated at each visit).

PATIENTS & VISITS Care Provided as Needed
Many patients are seen on an annual basis to review and receive an updated Care Plan (page 3).Over the last two years we have experienced an increase in visits, and patients seen in our clinic.The Care Team continues to offer more frequent appointments to patients with complex medical and psychosocial concerns exacerbated by the ongoing pandemic, as well as emerging medical issues.

Welcoming New Patients
The AYA Cancer Program team enjoys building long-term relationships with patients who trust us with their survivorship care, year after year.The team also looks forward to welcoming new patients; validating that survivorship can be difficult; and providing Survivorship Care Plans and care coordination for their next phase of cancer-related care.

Telehealth
The AYA Cancer Program's team continued to offer telehealth survivorship visits through most of 2021.This mode of connection was popular with our patients, with 76% of visits that took place during the Massachusetts state of emergency conducted via telehealth.
Due to changing parameters and restrictions on telehealth implemented with the end of the state of emergency, the ability to offer telehealth appointments became more limited.To encourage policy makers to consider expansion of telehealth services and to highlight the successful use of connecting with patients virtually the team has submitted a manuscript titled: AYA Survivorship Care: Emerging from the COVID-19 Pandemic Stronger through Teleoncology.

Electronic Health Questionnaire (HQ)
Prior to appointments, patients are asked to fill out a HQ, developed by the AYA Program Care Team.This document helps identify any concerns the patient may be experiencing.In 2020 we successfully piloted sending a web-link that would collect responses directly in our secure REDCap© HQ database.This year the HQ was sent electronically whenever an email was available.This process saved time as the HQ was filled out and reviewed by providers prior to the appointment time.

AYA Cancer Program financial navigation:
As the pandemic continued to impact the financial wellbeing of our patients, the AYA Cancer Program team provided navigation services whenever possible.Patients were counseled or provided support on topics ranging from: • Billing/cost of medical care

Michigan-Genome Social Stress impacts AYAs
In September 2021, the National Cancer Institute (NCI) awarded a five-year grant to Dr. Brad Zebrack of the University of Michigan, who is leading a study on the extent to which social isolation, socio-economic disadvantage, and social determinants of health alter the patient's genome, changing susceptibility to late effects and disease outcomes.Dr. Parsons is delighted to be one of the co-investigators on this highly innovative new study among survivors of lymphoma.

Patient Reported Outcomes (PROs) on studies
In September 2020, the NCI awarded a two-year grant to Drs.Parsons and Michael Roth (MD Anderson Cancer Center) as part of the Childhood Cancer Data Initiative.The co-PIs sought to develop consensus about the capture of PROs in AYA cancer clinical trials, standardize the collection of socio-demographic and social determinants of health, and begin the transition to electronic data capture for PROs.Thus far, the duo have worked successfully on the design of four studies (osteosarcoma, Hodgkin lymphoma, non-Hodgkin lymphoma, and ALL) under this initiative.In the remaining 18 months, the team plans to formally evaluate the functionality of electronic data capture.

PUBLICATIONS Survivors' Perspectives on Treatment Decision-Making and Understanding of Late Effects
Members of the AYA Cancer Program were awarded a Leukemia & Lymphoma grant in 2019 to better understand survivors' perspectives regarding aspects of their cancer experience.Following a delay due to the pandemic, results of our national survey and interviews with patients were published in two manuscripts in 2021.

Interview with Dr. Parsons
The American Society of Clinical Oncology (ASCO) Women Who Conquer Cancer Initiative interviewed Dr. Parsons about her career-long mentoring of researchers and providers.
Parsons, MD, MRP Professor of Medicine and Pediatrics, Tufts University School of Medicine Medical Director, Reid R. Sacco AYA Cancer Program Director, Center for Health Solutions, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center Program's contribution to the World Cancer Day (2/4/2021) awareness campaign (#iwill; #wewill message) reflected our use of telehealth this year.

TRAINING
Dedicated training in AYA and/or survivorship care is rare for most medical providers.For this reason, including providers and future providers in the AYA Cancer Program is essential to advancing awareness and interest in these specialized areas of care.Dr.MichaelWismer is a 2 nd year Hematology/Oncology Fellow.He will be spending his dedicated 18-month research training under the mentorship of Dr. Parsons.Dr. John (Jack) Melson is a 2 nd year Hematology/Oncology Fellow.He will be spending his dedicated research training period under the co-mentorship of Drs.Parsons and Upshaw (Cardio-Oncologist).
Dr. Emily Anderson (a former AYA Summer Scholar and current pediatric intern at Massachusetts General Hospital) worked with Dr. Linendoll to expand survivorship's reach.She created Breast Health Care Plans, for patients who recently completed treatment.She also has closely partnered with Dr. Parsons on the clinic's late effects database.Neena Patel, MS(c) continued to volunteer in 2021, assisting with quality improvement projects.She will work closely with the team through early 2022 as she composes her master's thesis titled 'Women's Health in Lynch Syndrome.'We congratulate Neena on her recent acceptance to Tufts University School of is the Principal Investigator for a multi-site hybrid type 2 intervention study, supported by the Leukemia & Lymphoma Society (LLS).The study aims to evaluate whether access and support from dedicated financial navigators reduces financial distress in AYA survivors of blood cancer.This study will be conducting entirely remotely from recruitment to consent and assessment.The study team includes members of the AYA Cancer Program team, Research Assistants, Navigators and a Statistician.The study will be open to AYA patients in six hospitals located across the United States, including Tufts MC in 2022.
To read the abstracts online: Survey Results PMID:34452864; Interview Results PMID:34524526 To read the article online: https://connection.asco.org/magazine/asco-member-news/women-who-conquercancer-dr-susan-k-parsons-believes-mentoring-team-effortLeukemia & Lymphoma Society (LLS) Patient Education Workshop: Drs.Parsons and Linendoll, and Rachel had the opportunity to speak to AYAs located throughout New England at this virtual workshop.Aims included: • Share ways to advocate for long-term follow up care following cancer treatment • Highlight the importance of receiving a Survivorship Care Plan Northeast AYA Cancer Conference: AYA Cancer Program supporters, The Reid R. Sacco AYA Cancer Alliance (page 14), launched an inaugural conference in April 2021.The conference brought together experts in AYA care including Dr. Archie Bleyer who is considered to be one of the AYA cancer movements catalysts.• Dr. Parsons presented a session titled 'The Current State of AYA Cancer and of AYA Survivorship Care' and joined a panel titled 'The Next Decade of the AYA Cancer Movement: Emergent Risks, Challenges and Solutions,' with esteemed colleagues Dr. Stuart Siegel, Dr. David Freyer of Keck School of Medicine, University of Southern California, and Dr. Roth of MD Anderson.• Dr. Linendoll presented a session titled 'Putting Lives Back on Track: Onco-fertility.' • Rachel joined an AYA panel moderated by Dr. Rebecca Johnson of Mary Bridge Children's Hospital titled 'The Patient Perspective.' • Dr. Kumar moderated the day's sessions.Tufts University: Rachel virtually returned to Boston-area undergraduate classes to share the young adult cancer experience.Begun in 2016 this initiative aims to bring awareness of AYA cancer to AYA-aged peers in a university setting.AYA-Aged Audience AYA Patient/Survivor Audience

Annual Report 2021 Page 6 TUFTS MC COLLABORATIONS Nutrition Referral Improvement Project Nutrition, Ear, Nose, Throat (ENT) & AYA Survivorship:
The Tufts MC's Cancer Committee identified a need to improve nutrition referrals for patients with head & neck cancers.Dr. Parsons connected members of the AYA Cancer Program, who had previously developed referral tracking databases, with members of ENT and the Nutrition departments to provide this database support.This initiative has resulted in a streamlined referral process for ENT patients to Nutrition, and increased ENT patient referrals to survivorship care.
AYA Cancer Program team & Tufts MC Cancer Center Financial Navigator partnership:Loss of employment, exacerbated during the pandemic, can have far reaching impacts, and potentially devastating effects for cancer survivors, particularly when employment is linked to the survivor's health insurance.Dr.Linendoll took the lead role in establishing a connection with the Cancer Center's financial navigator.The navigator helps link patients to the best insurance plan, based on their eligibility.This partnership led to patients:• Enrolling in secondary insurance plans to expand coverage • Reducing deductible/co-pays through change of insurance plan • Establishing a new insurance plan when their employer's plan ended coverage Back-to-Back appointment scheduling: Patients benefit from the close partnership between the AYA Cancer Program team and Dr. Jenica Upshaw, Director of the Cardio-Oncology Program.We continue to offer back-to-back appointments, on select Monday afternoons for ease of care coordination and scheduling.

Thank You & Happy Retirement, Ruth Ann!
Ruth Ann Weidner, MBA, MRP, has worked with Dr. Parsons on and off for more than 20 years.Ruth Ann supported the AYA Cancer Program as the database manager, building numerous databases and serving as the Institutional Review Board liaison for all research studies.We wish her well in retirement!