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Providing and Advancing Survivorship Care in Neuro-Oncology

, by Molly Maher, NCI Communications Fellow

Heather Leeper

Dr. Heather Leeper


Dr. Heather Leeper is involved in every aspect of a patient’s illness experience. She shares how she is advancing survivorship care in neuro-oncology.

Survivorship focuses on the health and well-being of a person with cancer—from the time of diagnosis until the end of life. Care partners, such as family and friends, are also an integral part of the survivorship experience and can be referred to as co-survivors. People living with brain and spinal cord tumors face many unique challenges in survivorship. Our health care team strives to work closely with patients and their care partners to improve their experience and quality of life.

Survivorship includes the physical, mental or cognitive, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond. Survivorship also includes follow-up care (regular health and wellness checkups), late effects of treatment, cancer recurrence, and quality of life.

This is the driving force behind the work of Heather Leeper, M.D., neuro-oncologist and assistant research physician at the NCI Center for Cancer Research's Neuro-Oncology Branch. She has a special interest in understanding the ways in which patients, caregivers, and their health care providers can collaborate to provide personalized care for people living with brain and spinal cord tumors.

I strive to learn about and be involved in all aspects my patients’ illness experience, recognizing the significant impact the illness has on their unique and individual lives and their relationships with others.

Heather Leeper, M.D.

Dr. Leeper received her medical degree from Chicago Medical School and a Master of Science in applied psychology from Rosalind Franklin University of Medicine and Science. She completed a neuro-oncology fellowship at Mayo Clinic in Minnesota and a degree in clinical research at Mayo Graduate School. During her training, she became increasingly interested in caring for the patient beyond tumor-directed treatments.

As an attending physician, Dr. Leeper fully recognized the dire need to improve patient-focused care and survivorship care within neuro-oncology. This inspired her to complete a second fellowship in hospice and palliative medicine at the University of Illinois to develop expertise in symptom management, communication, and supportive care principles.

In 2019, Dr. Leeper joined the Neuro-Oncology Branch to conduct patient-focused research and to create equitable supportive and survivorship care. Her primary research goal is to improve quality of life by improving symptoms and communication between health care providers, those living with brain and spinal cord tumors, and their care partners. She also aims to deliver effective coping strategies.

Educating Neuro-Oncology Providers

“Survivorship care should focus on the person living with the disease and not the disease itself,” says Dr. Leeper. “And there are a variety of factors that can impact the disease experience for a person, including personal roles and relationships, attitudes and beliefs, physical changes, and symptoms.”

The survivorship experience for people who have (or had) cancer involving their brain and/or spinal cord may be different from other cancers. These cancers are more likely to cause difficulties speaking, understanding, reading, and performing activities. People can also experience weakness, loss of sensation, and balance changes.

To address the unique needs and experiences of people with brain and spinal cord tumors, Dr. Leeper collaborated with Terri Armstrong, Ph.D., deputy chief of the Neuro-Oncology Branch, to lead a multidisciplinary working group to develop a neuro-oncology specific survivorship care plan.

“People are often too ill to remember details during hospital stays or other procedures. The survivorship care plan allows people to have an accurate summary of care and know what to expect for follow-up appointments so they can plan accordingly,” says Dr. Leeper.

The Society for Neuro-Oncology, the largest professional organization for neuro-oncology health care providers, shared the care plan to foster greater awareness of neuro-oncology patient survivorship care needs and challenges. In 2020, Dr. Leeper provided a virtual educational lecture to further educate providers on the needs of survivors of brain and spinal cord tumors.

“Our team at NCI is dedicated to continued learning about innovations that seek to improve patient care and communication between health care providers, patients, and caregivers. We strive to share our knowledge and collaborate with our colleagues to reach as many people living with brain and spinal cord tumors as possible,” says Dr. Leeper. “In this way, we can be an integral part of improving quality of life, symptoms, and functions for our global patient community.”

Partnering with Patients and Caregivers

Survivorship care at the Neuro-Oncology Branch aims to acknowledge that each patient and family has their own unique issues, needs, and concerns. “We want to honor those differences and recognize that the needs and priorities of patients and care partners will evolve over time depending on where they are in their treatment course,” says Dr. Leeper.

When providing care and treatment at the Neuro-Oncology Clinic at NIH, Dr. Leeper focuses on whole person care. She emphasizes a partnership between patients, families, and the care team to communicate and establish personalized goals and priorities. A patient-centered communication approach allows patients and families to make well-informed health care decisions consistent with their values, goals, and preferences. “It also provides patient satisfaction, identifies individual concerns, helps patients understand and stay on their treatment plan, improves health outcomes and quality of life, and enhances patient and provider well-being,” says Dr. Leeper.

Dr. Leeper also listens attentively during visits to understand the full picture of what a person is experiencing. She appreciates that people have lives to lead beyond their diagnosis and care for their tumor—and desires to help them do so.

Survivorship Symposium to Advance Research and Care

To advance survivorship care for people with brain and spinal cord tumors, Drs. Leeper and Armstrong are leading a first-of-its-kind virtual Survivorship Care in Neuro-Oncology Symposium on June 21, 2021.

The symposium will provide educational presentations and discussions with researchers, health care providers, and patient advocates on the challenges and experiences of people with brain and spinal cord tumors and their care partners. The intent is to foster collaboration that will produce guidelines for high-quality survivorship care in neuro-oncology.

The symposium will include working groups with neuro-oncology professionals to further develop a research agenda addressing the gaps in neuro-oncology survivorship research and care. “We are excited about bringing together experts in the field to create actionable steps to advance research and care for people with brain and spinal cord tumors,” says Dr. Leeper.

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