Navigation seeks to assess and address barriers that hinder a patient’s access to care. With the success of the nurse navigation program at Penn Medicine’s Abramson Cancer Center, leadership expanded navigation to neuro-oncology. The purpose of this article is to describe this population’s unique needs and the effect of nurse navigation. Although the navigation role maintains integrity with regard to scope of practice, specialized navigation strategies are tailored to the neuro-oncology population and are different from other disease sites.
AT A GLANCE
- Patients diagnosed with a primary brain tumor experience unique complexity in their disease site with the cognitive and physical impact of the disease trajectory.
- Nurse navigation has an opportunity to intervene early for patients and families to ensure coordinated, timely care by collaborating with the interprofessional team, rehabilitation services, and family members.
- Success of a neuro-oncology navigation program can be measured in number of patients navigated, number of patient encounters, and time to the start of treatment.
Each cancer diagnosis presents unique challenges for patients and their family members. A primary brain tumor often is discovered after a sudden acute event, such as a seizure, change in mental status, or stroke-like symptoms (Alexander & Cloughesy, 2017). After a confirmed brain malignancy diagnosis, patients may be admitted emergently for surgery and then discharged to a rehabilitation facility, skilled nursing facility, or home. Depending on pathology, patients will require follow-up with medical oncology and/or radiation oncology (Ricard et al., 2012; Schubart, Kinzie, & Farace, 2008). Postsurgery, patients continue on a path toward additional treatment, with enough time for healing and rehabilitation (Gordils-Perez, Schneider, Gabel, & Trotter, 2017; Ricard et al., 2012). The immediate effect on caregivers and family members includes physical and cognitive side effects, psychosocial needs, financial distress, and work absences (Lovely et al., 2013, Schubart et al., 2008, Whisenant, 2011). Throughout the trajectory of diagnosis and treatment for a brain malignancy, the neuro-oncology nurse navigator provides support, intervention, and coordinated care.
Oncology navigation has become a crucial element in providing efficacious care within a healthcare system (Freeman, 2013). At Penn Medicine’s Abramson Cancer Center, a multisite urban academic medical center, the nurse navigation (disease-based) model focuses on the navigation priorities of access, education, referrals, and care coordination, which are consistent with the efforts of other navigation programs (Gordils-Perez et al., 2017). Navigators must assess the patient’s clinical situation and needs and have a working knowledge of healthcare system operations, priorities, and efforts. These must be integrated to serve the patient and provide information and options (Bailey, Trad, Kastelan, & Lamont, 2015; Gilbert et al., 2011). Although navigators maintain a consistent scope, they apply disease site knowledge to most effectively address barriers and meet patient needs (Gordils-Perez et al., 2017). Because of the effect that brain tumor treatment has on patients and families, a dedicated neuro-oncology nurse navigator is assigned to this unique population.
Brain tumors are rare and, for many patients, they represent a terminal diagnosis (Alexander & Cloughesy, 2017; Bailey et al., 2015; Lovely et al., 2013; Schubart et al., 2008). Some patients travel long distances to receive treatment, adding logistical, practical, and financial challenges. Patients are dependent on caregivers, may be unable to drive, are younger in age or have children, or have cognitive or visual deficits (Bailey et al., 2015). Between the complexity and severity of the diagnosis and the interprofessional care, the navigator functions in a fast-paced environment while remaining sensitive to patient and family needs (Seek & Hogle, 2007). To facilitate care and to best work through barriers, a neuro-oncology nurse navigator is engaged consistently with inpatient and outpatient providers in neurosurgery, neuro-oncology, radiation, research, supportive services, and other specialties (i.e., neurology), as well as with call centers and marketing teams to facilitate care after referrals from physician liaisons or online campaigns (Bailey et al., 2015; Gilbert et al., 2011).
In the neuro-oncology population, caregivers are crucial partners in patient care as a result of the patient’s functional and cognitive status. The caregiver role of providing transportation, administering medication, reporting symptoms, and providing direct physical care develops suddenly and unexpectedly and is in addition to other typical caregiver responsibilities, such as work and childcare (Parvataneni et al., 2011; Schubart et al., 2008; Whisenant, 2011).
As with any navigator’s responsibilities and scope, crucial points for neuro-oncology nurse navigation intervention exist during the transition from surgery to medical/radiation oncology treatments or at the time of progression and treatment changes. Interventions include clarifying an appointment time, facilitating communication with providers, collaborating with rehabilitation facilities, reinforcing treatment instructions, coordinating multiple appointments for the same day, or making social work referrals for home or respite care and psychosocial support (Schubart et al., 2008; Whisenant, 2011). In addition, the relationship becomes a safe place to discuss sensitive topics, such as end-of-life care or leaving a legacy (Schubart et al., 2008). Establishing this trust, reliability, and support early on is vital to patient and caregiver well-being.
Measuring the effect of the neuro-oncology navigation role is important to continue to refine and build the program, identify opportunities, and demonstrate strength and sustainability. Since the inception of this program at Penn Medicine, navigation referrals have increased to 408 patients in 2017 (encompassing about 2,000 encounters), an increase from 62 patients in 2015 (see Table 1). Data from the program show that referrals come for newly diagnosed patients and established patients with a range of navigation needs, such as triaging, coordinating appointments, communication with providers, education, and specialty provider or supportive referrals (i.e., social work or nutrition) (see Table 2). These neuro-oncology nurse navigation tasks and responsibilities are monitored in a database and reported to the facility’s program leadership (Penn Medicine, 2018).
The following is an example of a quality improvement project that took place at the author’s institution. The neuro-oncology nurse navigator and the neuro-oncology team established a goal of reducing the time from surgery to the start of radiation therapy for patients newly diagnosed with glioblastoma (GBM). The team set a goal that at least 50% of patients with GBM would start radiation within 35 days of surgery. Collaboration ensued between the inpatient and outpatient neurosurgical and oncology teams and the neuro-oncology nurse navigator. The neuro-oncology nurse navigator coordinated the radiation and neuro-oncology appointments in time for discharge planning. If patients were discharged to rehabilitation, the neuro-oncology nurse navigator then would speak with rehabilitation staff members to discuss the urgency of appointments and address transportation needs. Within six months of the project’s inception, the number of patients starting radiation therapy within 35 days rose from 43% to 60%. Of note, some additional patients fell into a 36- to 38-day range because of factors such as the day of the week that they could start. Although this subset was just short of the goal, it was within close proximity and was not considered a major delay. The ability of the neuro-oncology nurse navigator to bridge the specialties and transitions in care to create timely access to treatment is a powerful demonstration of the role.
Implications for Practice
Patients with neuro-oncologic conditions are unique regarding the physical and cognitive side effects of the disease and potentially terminal diagnosis (Lovely et al., 2013). Assisting these patients requires specialized knowledge in neuro-oncology and a coordinated, thorough effort in providing care to tailor interventions and support (Strusowski et al., 2017). In addition, the neuro-oncology nurse navigator must be able to balance the reality of a poor prognosis or major side effects with hope and optimism.
Developing the role of the neuro-oncology nurse navigator takes creativity, flexibility, trust, and relationship building to grow within an established team and workflow (Bailey et al., 2015). In addition to the growing volumes of patients and navigation encounters, and the integration into the neuro-oncology team, success has been demonstrated by informal patient and provider feedback, as well as an increase in patient volume and an increase in opportunities, such as coordination of gamma knife treatments and navigating patients with brain metastasis. Although neuro-oncology navigation remains consistent to the original intention of nurse navigation by Freeman (2013), a brain tumor diagnosis and trajectory present unique opportunities for nurse navigators to tailor interventions and enhance patient care.
About the Author(s)
Eleanor Miller, MSN, RN, OCN®, is a manager and oncology nurse navigator at Penn Medicine’s Abramson Cancer Center in Philadelphia, PA. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. Miller can be reached at firstname.lastname@example.org, with copy to CJONEditor@ons.org.
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