Shawna Douglas, a head and neck nurse navigator, weighs in on the unique needs of this patient population.
Connecting patients to affordable dental services early on in their treatment trajectory is one of the most important aspects of head and neck cancer nurse navigation, according to Shawna Douglas, BSN, RN.
In an interview with Oncology Nursing News®, Douglas, who has been the head and neck oncology nurse navigator for Allegheny Health Network (AHN) for the past 5 years, offered her perspective on the unique challenges that patients with head and neck cancer face. She shared how nurse navigators play a unique role in connecting patients to resources, and how she hopes to see treatment improve for these patients.
“I hope to see fewer recurrences of head and neck cancer by treating [it] as early as possible and getting [patients] the proper treatment to reduce their risk of recurrence,” she said.
Oncology Nursing News: What does your role as a nurse navigator looks like?
Douglas: I work closely with our head and neck cancer patients, [and] team of surgeons and oncology physicians. My role as their oncology navigator is to be that 1 point of contact and to guide them through their cancer journey. I provide additional information resources, referrals, and support. For most people, receiving that diagnosis of cancer can be a difficult burden. I try to ease that burden by taking on some of their responsibilities such as making appointments, and helping them understand their treatment options—reiterating what the doctors have said to them.
What are some of the unique challenges that nurse navigators help patients with head and neck cancer navigate compared to some other disease subtypes?
Our patients need to see a head and neck surgeon for a consult if they haven't already seen one. Sometimes they [need] to meet with two different physicians within our group. Depending on the need for possible reconstructive surgery, we do have a surgeon here at AHN that specialized in head and neck microvascular reconstruction within our same group—which is pretty neat.
They also need to see a speech and swallow therapist for our consult oncology rehab, which includes head and neck lymphedema swelling of the head and neck. They always need a dietician to follow them [regarding] possible feeding tube considerations and they always need to see a dentist—regardless of treatment options. It is always good for our patients to have good dental hygiene and they need dental clearance if they are going to be receiving radiation to the head and neck. Stemming from the dental evaluation, a lot of our patients need to see an oral surgeon for some extractions that need to be completed prior to radiation starting.
Because of the chemotherapy agents that are involved with the treatments, an audiogram baseline hearing test is needed. We need to coordinate that—sometimes they need multiple scans to complete their staging process [and] that can be pretty tricky: trying to get the scan scheduled at the most convenient location, the most convenient time and date for some patients.
Another thing that stands out with our patients, [is] that there are sometimes issues with noncompliance because there are so many appointments that need to be scheduled. They get very overwhelmed. That's where I come in. I try to ease that burden.
Some [patients] have to undergo very large and invasive surgeries that affect their ability to talk and communicate effectively, [their] ability to swallow and eat. [Or] it affects their appearance and they have some depression, or anxiety. As a nurse, knowing the patient's family dynamics and how to support them, and how much support they may or may not have, is a huge part of their treatment and recovery.
In your opinion, what have been some of the biggest changes that you've noticed in the treatment your patients are receiving? What has gotten better and what gaps remain?
One of the biggest changes that we have seen is the use of the transoral robotic surgery. It is used for the treatment of oral pharynx cancer, meaning the back of the throat and [includes] the base of the tongue and the tonsils, primarily. This robotic surgery continues to grow as a modality of treatment. Robotic surgery is [now] always, in the back of our minds, as a possibility. It is a useful modality in reducing the side effects of the cancer therapy.
Surgical intervention sometimes goes hand-in-hand with radiation. It allows the radiation to be more precise and targeted after they have had the robotic surgery. They try to spare critical functions like the swallowing salivary production, [and] range of motion in the neck. [Radiation] has come a long way. Sometimes they can increase the dose areas to where they could not before for radiation. Additionally, there are certain types of cancers, particularly the HPV-related cancers, [where] they are learning how to safely de-escalate treatment, meaning reducing the area they treat, and reduce the dosage of chemotherapy.
From a medical oncology standpoint, at our weekly head and neck tumor board, we review eligibility for active clinical trials, which involves a lot of the chemotherapies and immunotherapies, as well as surgery and radiation. As nurse navigator, I work to schedule these patients in a timely manner so that may be eligible for screening of the head and neck clinical trials. Immunotherapy has come a long way, whether alone or in conjunction with chemotherapy, and it is sometimes comes along with decreased side effects of that treatment.
Could you share an example or two of a patient case where you were able to help connect them to the services that they needed and overcome barriers to care?
Recently, I had a patient who is 81 years old. She was diagnosed with stage III HPV-related squamous cell carcinoma of the oropharynx, which required her to have radiation to the base of tongue and her bilateral neck, along with weekly chemo. That was her treatment plan.
Everything was set up for her. But early on, I determined that she lacked transportation. I had talked with her family several times, she had sons [but] 1 was out of town and the other 2 had some other issues that prevented them from being able to assist her with this. She [was unable] to drive—she was very sick.
At Allegheny Health Network, we have patient care navigators that are part of our team in the community. They are a resource for our oncology team [and] assist with finding the best means of transmitting information for our patients. I reached out to her right away—that is part of my role; to get these patients in contact with them as soon as possible.
I identified the transportation as a barrier for this patient. That navigator was able to provide me with the correct form that needed completed to obtain, the patient's transportation benefits. A lot of times their medical benefits provide transportation benefit, so they can get reduced-cost, or sometimes free, transportation. I assisted the patient at the bedside while she was in her first infusion, we got her there to her chemo the first day, and I helped her that whole day with completing the forms. Her treatments were daily radiation for 6 weeks. If you think about that, that was a lot of transportation to and from [the clinic]. And then 1 day a week included chemotherapy, so it was a long day for her once a week. We wanted reliable [and] safe transportation.
Ultimately, she got through all her treatments safely, and she still has rides to and from all her follow-up appointments as well. Transportation was the key. You can have all the treatments set up, but if they cannot get to and from in a timely manner, that is an issue. It is disheartening to imagine not being able to be treated for your cancer due to lack of transportation.Each case is a little different, but that's where we all work as a team.
What are the topics that are most important to nurse navigators who specialize in head and neck cancer? Where do you see the trajectory of the field headed?
The first is HPV awareness, [and] educating patients [about] their diagnosis and their pathology when it comes back HPV positive. A lot of times I am reiterating what the doctor has said [and] the patients are not understanding why [they] have cancer and what this pathology means.
[I am passionate] about raising awareness to the parents with young children to advocate for the HPV vaccine. I was on a workgroup for that. We have the HPV vaccine for boys and girls at a young age to help prevent these cancers. That is a big topic for us.
Of course, the barriers to care, [and] finding new resources for patients are always on my mind. There are only a handful of support groups for our patients with head and neck cancer. We could definitely do better in that area.
Then, low-cost, or free, dental clinics has always been sort of a [challenge] to find. [We need] dentists for patients that either do not have the insurance or cannot afford even the out-of-pocket costs that comes along with the dental insurance.