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Patient and Caregiver Navigation: Empowering the Brain Tumor Community

Published on October 18, 2023 in Support Services

National Brain Tumor Society (NBTS) empowers patients with brain tumors and care partners with quality, unbiased information and resources through its Personalized Support and Navigation Program. As part of the organization’s commitment to providing unparalleled support, NBTS welcomed the newest member of the Personalized Support and Navigation team earlier this year.

Katherine Pahler is an important team member handling patient and caregiver navigation.

Katherine Pahler, RN, joined as the organization’s Patient Navigator, bringing with her more than 10 years of experience helping patients and their families navigate the complexities of the health care system. In this role, Katherine works closely with patients and care partners to equip them with information, tools, and resources while connecting them with support groups and building strong relationships at every step.

“Engaging with patients and care partners impacted by a brain tumor diagnosis has taught me that we must keep their unique needs and experiences at the center of our efforts,” Katherine said. “Whether newly diagnosed, facing a recurrence, navigating survivorship, or grieving a loss, I am dedicated to providing comprehensive support to empower our community throughout their brain tumor experience.”

How Patient and Caregiver Navigation Can Help

This free program is designed to be responsive to the individual needs of the person asking for help — at the moment they reach out — and provide support, guidance, and resources to help them navigate a brain tumor diagnosis and throughout their experience. 

The team, which includes Katherine and a few other staff members, cannot provide medical advice or direct patients and caregivers on which treatment or health system to choose. They can provide resources about what is the standard of care for the patient’s particular tumor type, information on clinical trials, and local health care institutions that specialize in neuro-oncology. The NBTS team might, for example:

  • Provide clarity for the newly diagnosed:
    • What should they know about their tumor type?
    • What key questions should they ask their care team?
    • What treatment options might be available to them?
    • Which health centers specialize in neuro-oncology in their area?
    • How should they go about getting a second opinion?
  • Offer support and resources throughout every stage of the brain tumor experience
  • Discuss clinical trial options for the patient based on their situation
  • Review brain tumor and treatment side effects with patients and their care partners and suggest ways to help manage them that they can discuss with their care team
  • Connect individuals with support groups and other services offered by NBTS
  • Direct them to external patient and care partner resources that can help them with a specific need or challenge, such as a quality of life concern
  • Explain who on their health care team can best answer specific questions they have (e.g., a question may be better suited for their social worker or case manager rather than their neurosurgeon)
  • Answer questions and help educate during their transitions in care (e.g., care after surgery transitioning from neurosurgeon to neuro-oncologist, or care transitioning to hospice care)
  • Introduce them to NBTS events where they can meet members of the brain tumor community
  • Provide them with information about who to contact and where to start when it comes to matters like Social Security Disability Insurance

“We will meet individuals where they’re at,” Katherine said. “Outreach to this program doesn’t stop at one conversation. We are here to listen and talk after an appointment, if desired, and to go over the information that the care team provided them with and supplement their pathway of care.”

The program is intended to give patients and care partners a safe space where they can talk to someone and ask questions to help process what they’ve heard. For many, that’s when they may think of a question they wished they had asked in their last appointment. 

“I’m here to listen,” Katherine said. “Patients go into appointments, and they are given numerous amounts of information under high levels of stress. When you’re stressed, you’re unable to absorb information to nearly the capacity you are in a relaxed state. We strive to create an atmosphere where people feel at ease to discuss their concerns openly.”

The team aims to answer questions without judgment so care partners and patients can feel empowered to make informed decisions.

Discussing Clinical Trials

Katherine speaks at NBTS’s Quality of Life Roundtable in Sept. 2023

Before joining NBTS, Katherine worked as a clinical research nurse at the Nexus Research Center at the Medical University of South Carolina. In her role, Katherine provided care to patients in clinical trials, including infusions, injections, observation, and post-surgical treatment. She also helped implement translational research to catalyze brain tumor treatments. 

“In my role, I worked on many studies with interventions related to the treatment of seizures for patients with brain tumors,” Katherine explained. “That pulled at me, probably even more than my surgical experience, because you would see how the seizures disrupted these patients’ lives. Patients go through the standard of care, but residual side effects can still be present after treatment. There are ongoing efforts to address short and long-term side effects of current brain tumor treatments, and we are here to connect patients and care partners to these resources.” 

When patients and care partners reach out to NBTS through the Personalized Support and Navigation Program, Katherine draws on her prior experiences to help educate people on what the clinical trial process might look like and help clear up common misconceptions. For other patients or care partners, Katherine can help provide additional insight into trials they might consider.

“It might look like discussing the mechanism of action for the medication in a particular trial or reviewing their biomarkers and talking about why this trial might be a good fit for them,” Katherine shared. “We want to see if we can find a clinical trial appropriate for their biomarkers.”

Contact the Personalized Support and Navigation Program

Katherine and the rest of the team can help guide you to accessible, quality, unbiased information for free regardless of where you are in your brain tumor experience. They’ll listen, support, and empower patients and care partners like you with key tools and resources to help you make more informed decisions about your care.

“There is no question too big or small,” Katherine said. “It doesn’t matter where you are in your experience. We are here for a conversation.”

Our Patient Navigator can connect with you through email, phone, or Zoom, depending on your comfort level, to answer questions and provide resources and tools to help you through your brain tumor experience. 

Learn More Email the Team

National Brain Tumor Society does not provide medical advice. Medical advice is “the provision of a formal professional opinion regarding what a specific individual should or should not do to restore or preserve health” [McWay 2015]. National Brain Tumor Society will provide information about the published standard of care for brain tumors, including trials, and may help patients identify trials to ask their medical team about for which the patient may be eligible if requested. However, NBTS and its employees will not make suggestions as to the treatment a patient should pursue.

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