UPMC Video Rounds - Head and Neck Cancer Survivorship Clinic

July 27, 2020


Marci Lee Nilsen, PhD, RN, Assistant Professor in the University of Pittsburgh School of Nursing and School of Medicine, Department of Otolaryngology: 

We know that health literacy can impact several things. It can impact treatment adherence, it can impact quality of life, increased hospital costs, so we wanted to get a better understanding of where our head and neck cancer patients are in terms of health literacy.

So we actually started employing a screening tool for all the patients coming into the clinic. And what we saw were that about 17% of our patients had low health literacy, and we wanted to try to mitigate that one, with education. We make sure that they understand, and they can tell us back what we've talked about. We ask open-ended questions, but we also help with coordination of care.

We take a really multi-disciplinary approach to how we treat our head and neck cancer patients, and we've really created a network of not just nurses and physicians and radiation oncologists and medical oncologists, but allied health providers and speech-language pathologists and physical therapists and dentists.

And so one of the really nice things that we've created is this network. So when we refer a patient for something specific like lymphedema, we know where they live, and then we try to find out the physical therapist that's closest to them.

The other benefit of having this network is that if patients have a change, so if they have more pain or they're hospitalized, their physical therapists let us know so that we can then decide what needs to be done. Maybe we need to see the patient again. Maybe the patient needs to have more testing. And it really lets us identify issues early before they progress. 

So we know that patients go through intensive treatment, and at the end, most of them look for that end date, and they wait for it, and they feel like their symptoms and their treatment effects are just going to go away. And so we do follow them closely for surveillance for the first five years.

But even after that, we need to worry about other things like swallowing trouble, so patients can have dysphasia late. And so it's really important for us to educate them, provide them written materials that they can understand, and give a person, give them someone to contact so that if they start to develop those problems, they know who to call and not just go in and see a doctor who may not even understand how complex their issues are because of their history. 

So this really allows us to ask the patient what they're having trouble with, identify what is bothering them, so the top three, four, five issues that they're having, and it allows us to focus their care.

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