Background: The delivery of specialized pediatric oncology care between multiple sites requires effective communication and coordination of care. Patient care may suffer when patients transition between sites and different providers without proper guidance. Moreover, breakdowns in communication can result in patient and provider dissatisfaction and may negatively impact cost efficiency.
Objective: To develop a patient navigation program to address gaps in the coordination of patient care and communication in our pediatric oncology network.
Methods: We used a quality improvement approach to develop a nonclinical patient navigation program as an intervention to improve patient care transitions and communication. We evaluated the intervention with process, outcome, and balance measures.
Results: Within 2 years of instituting the patient navigation program, it was used for nearly 80% of all patient transitions. Communication improved among patients and providers, and providers reported improved coordination of care between sites.
Conclusions: The nonclinical patient navigator improved communication and fostered a culture of understanding for patients and families transitioning between multiple healthcare facilities in our pediatric oncology network. This model may apply to other healthcare systems that treat children with complex medical conditions requiring coordination of care.
For children living in rural America, the delivery of specialized pediatric medical care requires collaboration between academic children’s hospitals and care providers in their home communities.1,2 Pediatric oncology care is an example of a complex care delivery system in which pediatric patients may receive diagnostic evaluation and treatment planning at major pediatric oncology centers and then receive most of their treatment in smaller pediatric oncology programs closer to their homes. The coordination of care among healthcare facilities is important to ensure high-quality, cost-efficient healthcare and optimal patient and provider satisfaction.3 In our experience, coordination of care in a hub-and-spoke model is not always optimal. Gaps in the coordination of care and communication cause delays in chemotherapy administration, appointment rescheduling, and frustration for both patients and staff.
We describe our experience of using a patient navigator model to address gaps in the coordination of care and communication in our clinical pediatric oncology affiliate network. The duties of patient navigators vary widely, but their primary role is to eliminate the barriers to care for patients.4,5 When patients transition between multiple providers, patient distrust frequently occurs.6 Therefore, we sought to bridge communication gaps in our pediatric oncology network to eliminate barriers to care and to improve trust for patients and their families as they transition between sites.
The St. Jude Children’s Research Hospital (St. Jude) Affiliate Program extends access to protocol-structured treatment and clinical research trials to children who live throughout the US Southeast and Midwest. Eight local health systems with pediatric oncology clinics comprise the St. Jude Affiliate Program. Pediatric patients frequently transition between the main campus in Memphis, TN, and their home affiliate clinics. Highly specialized care is delivered by the St. Jude main campus, but most treatment is delivered by the affiliate clinics.
Because the primary reported challenge of coordinating care in the St. Jude Affiliate Program was communication related, we created a nonclinical patient navigator position. We received input from the St. Jude Patient Family Advisory Council, who helped guide the goals of the intervention. The goals of the intervention were to educate families about what to expect and who to contact for needed resources at their affiliate sites, and to foster a smooth and safe transition of care as families prepared to return home. Setting expectations was a critical component because some of the affiliate clinics had slightly different policies and procedures from what the families were familiar with during their stays on campus in Memphis.
The patient navigator visited each affiliate clinic to meet and learn about the staff to share direct knowledge with patients and families. Photo albums were created, so families could see their local care providers and other important specific details of the affiliate clinic. Printed materials for each individual affiliate clinic, including family guidebooks and fact sheets, were developed and shared with the families.
The patient navigator met with patients and their families in Memphis before their care was transitioned to the affiliate clinics. The visits ranged from 30 to 60 minutes. A care coordination assessment was completed by families at the end of their visits. These assessments were used to ensure that the families had a full understanding of the transition process and knowledge of the available resources. A process map of the intervention is shown in Figure 1.
We measured the process by tracking usage of the patient navigator over a 2-year period. We tracked the total number of patients and their families who met with the patient navigator before their first affiliate clinic visit and the total number of patients returning home to the affiliate clinic. We recorded whether the St. Jude provider granted approval for a patient navigator visit. We used patient survey results and staff interviews to measure the outcomes of the intervention over the same 2-year period in a before and after format. Balance measures were collected by surveying the healthcare providers on a regular basis. Every other month we interviewed the providers regarding negative feedback on the program.
After the first year of the patient navigator program, 55 of 112 (50%) patients transitioning to their home communities met with the patient navigator. After the second year, 76 of 100 (76%) patients met with the patient navigator, resulting in a nearly 30% increase from the first year (Figure 2). The number of patient navigator visit approvals from St. Jude providers also increased from year 1 to year 2 (Figure 3). This increase coincided with awareness events delivered to St. Jude providers. The outcomes of the intervention were measured by prenavigator and postnavigator parent surveys (Figure 4). The presurvey was done prior to the initiation of the program, and the postsurvey was done at the end of the second year. Although not statistically significant, each survey question showed improved scores after visiting with the navigator.
We noted many favorable comments in the parent surveys, such as “Instructions on the process and directions where to go were thoroughly explained to us prior to going. We felt completely comfortable before going.” “The affiliate sent me a text with my new appointment times and a phone call before we ever left St. Jude in Memphis. It was nice having someone somewhat explain the transition process to us.” “We were welcomed into the ‘family’ at the affiliate clinic. I fully trust their ability to care for and treat my child.”
The staff interviews similarly had only favorable comments. One affiliate physician remarked, “I know it is a great benefit for the parents and helps reassure them when returning home.” One St. Jude physician commented, “Thank you for adding this position as it really helps families feel more comfortable returning home.”
In the beginning of the program, we encountered barriers to implementation of the intervention. First, as a new program, some providers were hesitant to use the patient navigator. Over time, reluctance to use the patient navigator service diminished. Second, several providers did not realize that the patient navigator role was nonclinical and assumed that the patient navigator would transmit clinical information. The patient navigator and a nursing supervisor provided additional education to the care teams about proper use of the nonclinical navigator program. Finally, similar to other patient visit types, some of the patient navigator visits were subjected to no-show appointments. The majority reason was a conflicting appointment.
We employed a nonclinical patient navigator to ease the transition for patients and families moving from an academic pediatric cancer center to pediatric oncology clinics in their home communities. This intervention improved communication and helped families feel more comfortable returning home. The patient navigator also transmitted messages from families to both care teams, further facilitating the care collaboration. Both staff and families stated that the program was beneficial.
Some limitations to this program were evident. Not all patients were able to meet with the patient navigator. Early on, this was most likely due to the novelty of the program and reluctance from some St. Jude providers. Because approval from a St. Jude provider was the first step for establishing a patient navigator visit, this was key for the process. We addressed this limitation with several awareness campaigns by using written brochures, meeting with key stakeholders, and providing feedback on the program to the St. Jude providers. Over time, the predominant reason for not meeting with the patient navigator was that the patient families did not have enough time before returning home. We addressed this issue by providing phone calls and video conferences, which were more convenient to schedule than were face-to-face meetings. Providing flexible meeting times and locations for families also improved this limitation.
Another limitation of the intervention was a lack of understanding of the role of the nonclinical patient navigator. All stakeholders had to recognize that the nonclinical patient navigator did not deliver clinical information but rather delivered logistics information about the care transition. However, the utility that a clinical navigator would provide for some patients was evident. Therefore, we are currently developing a clinical patient navigator position to provide clinical information and support for transitioning patients.
Our patient navigator program differs from typical patient navigator programs used in adult oncology centers.7,8 A hub-and-spoke model of medical care for a complex patient population, such as pediatric oncology patients, requires effective communication and a culture of understanding.9 Both patients and staff at each site benefit when expectations are understood in advance. In theory, more coordinated care is likely to be more cost-effective and improve quality as well.
In conclusion, this model of navigation could be extended to other healthcare institutions that treat children with chronic, complex medical conditions who reside outside of urban centers.
The authors thank Nisha Badders, PhD, ELS, for scientific editing of the manuscript. The authors are grateful to the clinic staff for their participation in the project and continued drive to improve patient care.
This work was supported by the American Lebanese Syrian Associated Charities.
Conflict of Interest Disclosure
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- Hurd TC, Kaplan CD, Cook ED, et al. Building trust and diversity in patient-centered oncology trials: an integrated model. Clin Trials. 2017; 14:170-179.
- Freeman HP. Patient navigation: a community based strategy to reduce cancer disparities. J Urban Health. 2006;83:139-141.
- Cantril C, Haylock PJ. Patient navigation in the oncology care setting. Semin Oncol Nurs. 2013;29:76-90.
- Levit LA, Byatt L, Lyss AP, et al. Closing the rural cancer care gap: three institutional approaches. JCO Oncol Pract. 2020;16:422-430.