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Survivorship Begins at Diagnosis

June 1, 2018

The Head and Neck Cancer Survivorship Clinic: A New Model of Multidisciplinary Care Head and neck cancers (HNC) constitute the sixth leading cause of cancer worldwide, and there are approximately 60,000 new cases diagnosed annually in the United States. The majority of new cases are diagnosed as late-stage disease and typically have been associated with older adults — over the age of 50. However, with the rising rate of human papillomavirus-caused HNC, the overall trends are leading to an increase in cases and more cases diagnosed in younger individuals.

The burdens of these cancers for afflicted patients are significant, from diagnosis through treatment, to post-treatment survivorship. The physical, emotional, psychological, and financial implications of a diagnosis of head and neck cancer tend to be overwhelming for many, and they persist long after the diagnosis and initial therapies have been provided.

Jonas Johnson, MD, FACS, chair of the Department of Otolaryngology at the University of Pittsburgh, has devoted his career to the care of patients with head and neck cancer, and to research to improve outcomes and quality of life, and to reduce disease burden. “There’s an epidemic, silent as it is, of oropharyngeal cancers in this country as a consequence of the human papillomavirus. It’s one of only five types of cancer with increasing rates of incidence, and it is why we are seeing much younger ages with these diseases,” says Dr. Johnson.

Dr. Johnson has seen all too often the effects these diseases and their treatments have on patients. His desire to deliver a better, more patient-centric approach to managing the comprehensive effects and needs of head and neck cancer survivors led to his collaboration with Marci Nilsen, PhD, RN, a researcher in the University of Pittsburgh School of Nursing, to create a dedicated, multidisciplinary, comprehensive clinic that could manage and follow these patients over the long-term, addressing their unique needs and challenges

as survivors.

Origins of the Survivorship Clinic

Officially launched in December 2016 after four intense and fast-paced months of planning, approvals, and work to obtain the necessary staffing, the UPMC Head and Neck Cancer Survivorship Clinic had its origins in prior work and discussions between Dr. Johnson and Dr. Nilsen while she was working on a postdoctoral research project studying patients who had lost the ability to communicate with their care providers while in the hospital. Many of these cases were survivors of head and neck cancer dealing with significant side effects, which sometimes is the loss of their voice. “During the course of her research,” says Dr. Johnson, “she andI began to talk more and more about the suffering that we were observing in our cancer survivors. And at the same time, she was discussing the growing movement in survivorship care for cancer patients, in addition to the Institute of Medicine’s recommendations on fundamental services for these patients.”

These discussions culminated in August 2016 with the desire from Dr. Johnson to approach the care of these patients in a different manner. Thus began the complex process to plan, build, and launch a multidisciplinary clinic for head and neck cancer survivors.

In the Clinic: Multidisciplinary Management

At present, the clinic operates one day a week, seeing patients in various stages of their survivorship, be it pre-, during, or post-treatment. However, a significant portion of the clinic’s work goes on in between the weekly sessions — arranging follow-up appointments, planning for new cases, discussing current cases or changes in a patient’s status, and much more.

The clinic consists of Drs. Johnson and Nilsen, along with an audiologist, speech language pathologist, physical therapist, swallowing therapist, and dentist. Patients are able to see all of these clinicians for the care and follow-up they need with a single co-payment, reducing the financial burden and streamlining the follow-up process into a single, multi-provider visit.

For Drs. Johnson and Nilsen, and the clinic staff, the philosophy is that survivorship begins at the time of diagnosis. While the clinic was focused on post-treatment patients during the initial months of operation in early 2017, inquiries and referrals from colleagues across UPMC pointed to a need to address and see some patients before they started their cancer therapy. Now, the clinic routinely sees patients in all stages of their disease. “It’s not uncommon for us to be evaluating and discussing care with a patient who has recently been diagnosed, and we also see patients who are long-term survivors, some of whom are 30- and 40-years post-treatment,” says Dr. Nilsen. This a testament to some of the progress made in curing these individuals, but it is also a heartbreaking revelation that even after such a duration cancer-free, these individuals are still facing challenges.

“These cases are confirmation that this kind of care for head and neck cancer survivors is relevant, and badly needed,” says Dr. Johnson.

One unique aspect of the clinic is that all patients respond to a patient-reported outcome questionnaire that is reviewed and responded to in real time during the visit. “We designed this aspect such that the questions we pose are ones we can act upon immediately. We use the University of Washington Quality of Life measure because it allows patients to prioritize their issues and identify which ones they have been affected by in the last seven days. Before I go in the room to talk to the patient, I already know what they are struggling with and can concentrate on those aspects,” says Dr. Nilsen. The clinic also screens for issues related to depression and anxiety, swallowing issues, oral health, neck disability, and health literacy. Clinicians will typically address first whatever the patient is having the most difficulty with and home in on the specifics. These measures are tracked longitudinally in the patient’s EHR so progress can be assessed over time and the data can be mined in the future for research initiatives.

During the clinic planning process, it was determined that the EHR for the clinic and the treatment summary needed to be a dynamic process. Patient records include pertinent information, such as tumor and surgery details and other past treatment notes. Additionally, each of the providers who see the patient in the clinic can, and do, write a note to the patient. These notes outline such things as the exercises they were given to perform, notations about any limited range of motion or pain, and what to do if they have questions. “We arm them with as much information as possible, and Dr. Johnson outlines when they should return for follow-up. The audiologists provide them with information about their screening. If the patient didn’t want to get an audiogram that day, we give them instructions on where they can go to have a full audiogram done at a more convenient time. The same applies to any notes from PT, dentistry, and the other providers in the clinic. At every visit, the patient gets a detailed, personalized note summarizing everything that happened in clinic and what the follow-up steps are,” says Dr. Nilsen.

Since the clinic opened in December 2016, approximately 550 unique patients have been seen, and that number continues to increase as knowledge of the clinic’s existence grows and the referral base expands.

Learnings, Challenges, and Changes Along the Way

Drs. Nilsen and Johnson learned much during the first months of the clinic’s operation, and they worked to adapt, change, and add new features as they learn more about the specific patient populations they are treating, and consequently, their specific needs.

For example, through screening and data capture, Drs. Nilsen and Johnson have determined that approximately 17 percent of the clinic’s patients have an inadequate level of health literacy. “This has shown us that we have to be very careful with not only the information we hand out, but in how we present the information during discussions so the patients are able to understand, process, and act upon what they are being asked to do. No one is served well if, when a patient leaves our clinic, they are thoroughly confused. This is a complex challenge we are addressing in multiple ways, for example, systematically reviewing and revising our existing patient materials,” says Dr. Johnson.

The clinic also is working to add an additional staff member, a geriatrician with expertise in both internal medicine and behavioral health, who will be able to help coordinate care for individuals with either of these needs as part of their overall care. For older adults, polypharmacy can be a significant issue — when medications for age-related health issues are added on top of the medications they need for aspects of their cancer —and a geriatrician is well-positioned to be able to help manage the complex needs of the older adult.

Research and Future Plans

With their ability to gather precise data on clinic patients longitudinally through the EHR and appended with various survey instruments, Drs. Nilsen and Johnson and their collaborators have an exciting portfolio of research projects either in progress or in development — 10 individual projects at the time of writing, all conceived and started within the relatively short16 months the clinic has officially been in operation treating patients.

One current project seeks to better understand the nature and implications of treatment-associated financial toxicity. Treatments are expensive; ongoing therapies such as physical and speech therapy, medications, and other care needs can extend far into the future as more and more patients survive longer and longer. Head and neck cancer patients have very specific late- and long-term effects requiring management. Drs. Johnson and Nilsen’s research hopes to better understand what the financial burdens facing these patients truly look like and how these may affect whether, when, and to what degree they are compliant with the prescribed or recommended care plans. “As providers, we have to do a better job of identifying when a patient is not compliant, what the barriers and reasons for it are, and whether we can we help mitigate it so they can receive the treatment they need,” says Dr. Nilsen.

Other in-progress lines of research are examining aspects of neck dysfunction. There is a growing understanding and concern that cognition can be impaired or affected by treatment therapies. There is some evidence in the literature that significant percentages of patients experience some form or degree of cognitive impairment after treatment, so Drs. Johnson and Nilsen are beginning to examine better ways to screen for or assess issues related to cognition in their clinic patients.

“At the same time, we are interested in understanding which stretching and exercises are most effective in caring for people with stiff neck and shoulders. We are interested in which interventions work best for people experiencing dysphagia and a host of other common complications. These kinds of side effects to treatment are far more prevalent than anybody has ever acknowledged. The next question, of course, is do these side effects get better with time? Unfortunately, what we are finding is they actually tend to get worse. Can we dampen or reduce the trajectory of these side effects? Our current hypothesis is the old adage: use it or lose it. So, we are learning that we must address these complications right at the time of treatment and then stay on top of it. These are the research questions for which we seek answers, and the design of our clinic will allow us to gather the longitudinal information needed to develop the next-generation of standards of care for head and neck cancer survivors,” says Dr. Johnson.

References and Further Reading

Selected papers and references used in this article from Drs. Johnson and Nilsen are listed below for further reading and review.

  • Albergotti WG, Schwarzbach HL, Abberbock S, Ferris RL, Johnson JT, Duvvuri U, Kim S. Defining the Prevalence and Prognostic Value of Perineural Invasion and Angiolymphatic Invasion in Human Papillomavirus-Positive Oropharyngeal Carcinoma. JAMA Otolaryngol Head Neck Surg. 2017; 143(12): 1236-1243.
  • Nilsen ML, Johnson JT. Potential for Low-Value Palliative Care of Patients With Recurrent Head and Neck Cancer. Lancet Oncol. 2017; 18(5):e284-289. Epub ahead of print.
  • Beers E, Nilsen ML, Johnson JT. The Role of Patients: Shared Decision-Making. Otolaryngol Clin North Am. 2017; 50(4): 689-708.
  • Huyett P, Kim S, Johnson JT, Soose RJ. Obstructive Sleep Apnea in the Irradiated Head and Neck Cancer Patient. Laryngoscope. 2017; 127(11): 2673-2677.
  • Rowan NR, Johnson JT, Fratangelo CE, Smith BK, Kemerer PA, Ferris RL. Utility of a Perioperative Nutritional Intervention on Postoperative Outcomes in High-Risk Head & Neck Cancer Patients. Oral Oncol. 2016 Mar; 54; 42-46.
  • Posluszny DM, Dougall AL, Johnson JT, et al. Posttraumatic Stress Disorder Symptoms inNewly Diagnosed Patients With Head and Neck Cancer and Their Partners. Head Neck. 2015;37(9): 1282-1289.
  • Maxwell JH, Mehta V, Wang H, et al. Quality of Life in Head and Neck Cancer Patients: Impact of HPV and Primary Treatment Modality. Laryngoscope. 2014; 124(7): 1592-1597.