Delivering care to survivors of head and neck cancer requires a village. The head and neck oncology team at MUSC Hollings Cancer Center knows that all too well, which is why they are participating in a nationwide clinical trial through the National Cancer Institute's Community Oncology Research Program (NCORP) to evaluate the HN Survivorship Tool: Assessment and Recommendations (HN-STAR).
The MUSC team is led by two head and neck surgeons: Evan Graboyes, M.D., a Hollings health care delivery researcher, and Terry Day, M.D., the Wendy and Keith Wellin Chair in Head and Neck Surgery and director of the MUSC Health Head and Neck Tumor Center at Hollings Cancer Center.
Graboyes said the study will look at ways to improve the delivery of efficient, coordinated, guideline-adherent and patient-centered care for head and neck cancer survivors. "We've recognized for a long time that just giving head and neck cancer survivors and their caregivers a survivorship care plan at the end of treatment is insufficient to achieve optimal outcomes. There is too much complexity in the needs-assessment, referral process and subsequent care coordination and communication," Graboyes said.
"This trial is testing a new care delivery intervention that will help providers to assess patient toxicity and subsequently coordinate the appropriate guideline-based care for patients."
The study is part of the National Cancer Institute's NCORP that aims to bring cancer clinical trials and care to patients in the communities where they live. Graboyes said that by streamlining the care for head and neck cancer survivors in this study, the patient, caregiver and providers may all benefit. Coordinating national standards of care across multiple disciplines also allows providers to be on the same page in caring for complex cases like head and neck cancers.
"NCORP does an amazing job of covering behavioral, health care delivery and interventional therapeutic cancer clinical trials across the cancer care continuum. It's not just about the treatment. It is also about things like prevention and improving screening, supportive care and quality of life."- Dr. Evan Graboyes
"NCORP does an amazing job of covering behavioral, health care delivery and interventional therapeutic cancer clinical trials across the cancer care continuum," he said. "It's not just about the treatment. It is also about things like prevention and improving screening, supportive care and quality of life."
One challenge both providers and head and neck cancer patients face is ensuring that all of the specialists involved in the treatment are on the same page. Graboyes said it takes a big team to manage the late and long-term toxicity experienced by head and neck survivors. Care team members include head and neck cancer surgeons, radiation oncologists, medical oncologists, dentists, oral surgeons, physical therapists, lymphedema specialists, speech language pathologists, gastroenterologists, primary care providers, mental health providers, social workers and pain specialists.
"All of these specialists have to work in unison to treat patients to evaluate and manage the long-term treatment toxicity they experience," he said. "There are other things we have to be aware of with survivors, too, like checking for recurrences or new and second cancers that can develop after the original diagnosis, which is common among patients with smoking and drinking-related head and neck cancer."
Improving patient care is not a new area of interest for Graboyes or other researchers at Hollings. In August 2020, Hollings researchers published a study in the Journal of Clinical Oncology - Oncology Practice, which aimed to improve the timeliness and equity of care delivery to decrease head and neck cancer recurrence and improve survival. It found there are multiple obstacles that prevent a patient from getting radiation treatment in a timely manner, including a lack of education on national standards of care, unexpected complications, poor communication and burdensome travel requirements.
This is an area of specialty for Graboyes and colleague and fellow Hollings researcher Katherine Sterba, Ph.D. The two have worked on several studies that aim to use technology to improve care and communication for head and neck cancer survivors. In 2019, the pair published a study in the Journal for Cancer Survivorship, examining the acceptability and feasibility of a survivorship needs assessment planning (SNAP).
"Through that study, we determined SNAP led to decreased unmet needs and distress among head and neck cancer survivors," Sterba said.
Sterba said technology-based programs are especially important for head and neck cancer survivors in a home setting because they aren't being seen by doctors as frequently as when they were still in treatment.
"There's such a multitude of complex post-treatment needs that our survivors face. It is almost impossible for doctors to sit down and address all of them in each follow-up visit," she said. "Technology really speeds that along and gets right to the patient's most urgent needs."
Graboyes said the HN-STAR trial will expand on the research into technology-based care models. HN-STAR consists of four main components: a symptom and behavioral self-assessment completed by the patient prior to visiting the clinician, a treatment summary checklist completed by the clinician prior to the patient's visit, a presentation of evidence-based management options during the visit and a standard care plan for the survivor derived from decisions made with the clinician.
Following the appointment, survivors taking part in the study will receive online support throughout the year through updated standard care plans. This is important because one of the critical challenges in providing optimal care for head and neck cancer survivors is assessing and managing the long-term impacts their treatments can have that can leave them with physical and psychosocial injuries, Graboyes said.
"Of the many different toxicities a patient may struggle with after treatment, it's challenging to identify which ones the patient and caregiver prioritize. Even once we do, we then usually have to coordinate with providers across health care systems, which poses additional problems. We also ask caregivers to shoulder a tremendous burden, so yes, it's challenging for providers, caregivers and the patients."
HN-STAR will run for three years with a goal of enrolling more than 350 head and neck cancer survivors across the country. Graboyes said he hopes to enroll around 10 patients at Hollings.
