An oral cancer therapy nurse navigator role
Regional and community cancer programs have evolved to meet the increasing demand for curative, palliative and maintenance cancer treatment provided by specialized oncology physicians, nurses, therapists, pharmacists and psychosocial teams. Safety systems are put into place to ensure the proper drug and dose is given to the proper patient for a prescribed duration, optimizing therapeutic effect. Safe handling procedures, chemotherapy classes and access to symptom management are built into current cancer treatment programs.
Oral cancer therapy as a treatment modality now represents more than a quarter of all cancer therapies. The locus of control in administration of these agents rests with patients and their caregivers, and it is vitally important that they have the knowledge and confidence in their ability to manage the medication correctly. The use of concurrent medications, physical and psychosocial limitations (including mobility and vision issues, declining comprehension or memory loss), the side effects of these drugs and their cost have an impact on patient adherence and safety and the overall benefit to patients.
In our cancer program at the Simcoe Muskoka Regional Cancer Centre (SMRCC) in Barrie, it had become apparent that the safety process inherent in traditional chemotherapy ordering and administration was not being followed with oral cancer therapy. The nurses noticed an increasing number of patients who had taken their medication incorrectly because they had misunderstood instructions given by the oncology physician or had anxiety about possible medication side effects. Our centre did not have a retail pharmacy on site, and we found instances of community retail pharmacies not filling prescriptions correctly or giving incorrect administration instructions to patients. I partnered with one of our centre’s oncology pharmacists and developed a lunch and learn presentation for cancer program staff to highlight the gaps in service and to brainstorm ideas.
Initially, when I investigated how other cancer programs were addressing challenges with the administration of these medications, I found there was a dearth of literature. Based on what I knew about nurse navigator roles, I proposed a registered nurse-led model of care to provide education, coaching, support and navigation for patients and their caregivers.
I proposed the following key practices for the new role of oral cancer therapy nurse navigator (OCTNN):
- Meet with patients and their caregivers to identify barriers in the use of oral cancer therapy and to clarify the plan of care with them.
- Refer patients to supportive teams, which might include a drug access coordinator, social workers, a dietitian or a Community Care Access Centre.
- Using the MASCC Oral Agent Teaching Tool, provide one-on-one education for patients and caregivers to decrease any anxiety and increase confidence and knowledge regarding the therapy.
- Call patients on the start date of therapy to ensure they are taking the right drug and right dose at the right time.
- Call patients on Day 10 to assess for side effects and provide therapeutic advice. Have the autonomy to schedule a physical exam or consultation with an oncologist or a nurse practitioner. Arrange other followups as required, based on the OCTNN’s assessment.
- Participate in patients’ monthly visits with the oncologist.
- Do telephone triage for symptoms and help patients navigate the health-care system.
- Provide outreach and education to retail pharmacies.
In the summer of 2012, I presented a briefing note and project plan for implementing this role to my supervisor. She supported the idea; we pulled a team together (nurse educator, nurse manager and myself) and developed a chart audit tool to collect baseline information on all patients receiving oral cancer therapy. The audit tool collected data on a number of factors related to treatment outcomes including medication adherence, side effects, ability to complete cycles of therapy and number of calls to the triage line for symptom management. The audit tool was also used to look at nursing documentation to ensure it reflected standards of practice specified by the College of Nurses of Ontario (CNO) and the Canadian Association of Nurses in Oncology (CANO), specifically in the areas of health assessment, therapeutic relationships, management of symptoms, teaching and coaching, facilitating continuity of care and patient advocacy. The audit tool was completed on 29 randomly selected charts of patients receiving oral cancer therapy in early 2013.
Our centre’s oncologists and nursing staff were supportive of the plan, and the first RN in the OCTNN role began accepting patients in April 2013. Unfortunately, we had a paper-based system at that time and weren’t sure how many patients were on oral cancer therapy. To ensure we had a controlled pilot, only those patients receiving one of the eight most common targeted oral therapies were enrolled in this pilot phase.
We soon discovered that most of the medications we had chosen for the pilot were given for palliative intent: the patients remained on the drug until their disease progressed or they experienced intolerable side effects. The number of patients exceeded our expectations. The OCTNN and I reviewed this situation and concluded that most patient concerns specific to oral cancer therapy could be addressed in the first three to four months of treatment, after which the OCTNN could confidently transfer continuing care to the primary oncology nurse.
We conducted an evaluation of the pilot in September 2013, using the chart audit tool. The results demonstrated improvement in medication adherence and ability to complete cycles of treatment. As well, fewer side effects and calls to the triage line were recorded. At the same time, we reviewed completed questionnaires, which had been given to patients when entering the program and then again at three months to determine their knowledge and confidence levels. Given the encouraging audit results and positive responses from patients, we felt ready to open up the pilot to patients on any prescribed oral cancer therapies.
The one-year chart audit, conducted in April 2014, demonstrated consistent positive results and continued improvement overall in the quality of nursing documentation.
As the oncologists gained confidence in the role of the OCTNN and as new oral cancer therapies became available, patient referrals increased. Once again, time management became challenging. We asked our technology department to create an electronic patient schedule and involved clerical staff in booking patients at appropriate times. We used the Ontario Telehealth Network for virtual visits with those patients who live a significant distance from the centre.
Our most recent survey, completed during summer 2014, measured patients’ satisfaction with the education provided, support from the OCTNN during oral therapy, care received at the centre and their ability to manage symptoms during treatment. The results indicated that 96 per cent of patients were “satisfied” or “very satisfied” with the service.
It is one thing to be a nurse with an idea and your heart in the right place, and quite another to create a change to the model of nursing care in a large, multi-layered organization. I have learned many lessons about change management and the challenges of sustaining a new program.
Our expanded project team meets monthly to address any issues and look for ways to improve the service. I have learned the value of constant communication and of obtaining support from stakeholders with influence. The management of oral cancer therapy has become a hot topic in recent years, and I have shared our work through regional, provincial and national associations so others may learn from our experiences.
Our success empowered the nurses involved and garnered support from managers and senior leadership. There are now three OCTNNs providing coverage five days a week at the centre. With the SMRCC pharmacists involved in the process of reviewing prescriptions to ensure accuracy and clarity before faxing them to retail pharmacies, we are now meeting current chemotherapy safety standards of the American Society of Clinical Oncology/Oncology Nursing Society.
There has been a paradigm shift in the delivery of oral cancer therapy at SMRCC. The care provided by the OCTNN is the accepted model for patients embarking on this treatment modality.
My role, transitioning from project leader to clinical lead, is to provide coaching and support to the OCTNNs. I will continue to look for ways to create nursing autonomy and innovation in our cancer program.
The author thanks Mary Gorr, Trish MacIsaac and Karin Robins (oral cancer therapy nurse navigators), Tracey Keighley-Clarke and Carole Beals (leadership team), Raagula Sivavoganathan (project team) and Lesley Moody, who shared the author’s vision.