Heather Niccum Haag on Improving Patient Education With Belzutifan


Heather Niccum Haag, BSN, RN, CCRN, shares her experience creating an educational resource for her patients with Von-Hippel Lindau tumors who are receiving belzutifan.

For patients with rare cancers, fewer educational resources are available. Oncology nurses can play a vital role in helping patients with these malignancies understand their treatments, according to Heather Niccum Haag, BSN, RN, CCRN.

Niccum Haag is a nurse who works in the neuro-oncology clinic at The Ohio State University Comprehensive Cancer Center - James Cancer Hospital & Solove Research Institute. She recently presented a poster at the 48th Annual Oncology Nursing Society (ONS) Congress which highlights the education plan she developed for patients with Von-Hippel Lindau (VHL) tumors about to receive belzutifan (Welireg).

In August 2021, the FDA approved belzutifan for patients with hemangioblastoma in patients with VHL. The agent is also approved for patients with VHL-related renal cell carcinoma and VHL-related pancreatic neuroendocrine tumors. As Niccum Haag explained in her poster presentation, prior to this approval, radiation and surgery were the only treatment options available for VHL. Patients receiving belzutifan, therefore, have not had systemic treatments that they are able to take at home.

She noted that, although the introduction of a new drug to the pharmaceutical market means that there is limited information available, patients must receive accurate and concise education related to the drug prescribed to them. Proper patient education yields improvements in medication adherence and adverse event reporting.

To that end, Niccum Haag sought to create a patient education handout that patients could take home and refer to after their visit. The educational sheet highlights how belzutifan works and what information patients should inform their health care provider about before treatment initiation. It also outlines the dose reductions a patient can anticipate needing should a dose-reducing adverse event occur. In addition, the sheet explains how the tablets should be handled and stored, how to properly take belzutifan, and what symptoms warrant a phone call to the health care team.

The goal was to centralize this educational resource so that other specialists caring for these patients (ie, neuro-oncologists, urologists, endocrinologist, and ophthalmologists, etc) would also know what to expect with treatment.

Niccum Haag explains that because VHL is so rare and complex, it is important to share all resources and education related to its treatment and possible symptoms across the health care team as these patients with these tumors typically require a multidisciplinary approach.

By developing an educational handout, patients can have a reference when they go home. Through the use of an electronic medical record messaging system, this document can also be disseminated to patients on their desktop or mobile device.

“There are always going to be new drugs coming to the market,” Niccum Haag told Oncology Nursing News®. “What I want others to take away from this [work] is [that] even when something is new, and there is limited information available, you need to take what you have available [and package it] so that your patients can understand the risks and benefits of the treatment options your team is providing to them.”


Niccum Haag, H. New drug, old problems: development of an education plan for patients and nurses for new to market drug, belzutifan, for management of Von-Hippel Lindau tumors. Poster presented at: 48th Annual Oncology Nursing Society Congress; April 26-30, 2023; San Antonio, TX. Accessed May 4, 2023. https://ons.confex.com/ons/2023/meetingapp.cgi/Paper/12781

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