With the current challenges in the healthcare system, patients and professionals are uncertain about the role, responsibilities, and communication patterns of primary care professionals during cancer care. It is time to understand the best practices for primary care nurses and cancer nurses that contribute to cancer care quality patient outcomes. Only with coordinated approaches between these two can we ensure better processes and outcomes.
Consider this scenario. A 70-year-old male patient from a rural community has never had an illness except for hypertension and has never been hospitalized. He has a 20-year clinical relationship with a primary care nurse practitioner. He is diagnosed with terminal cancer and sent to an oncologist at a comprehensive cancer center (CCC) 120 miles away from his home. The oncologist takes over care—basically to do no treatment but symptom management. The patient is to return periodically to the CCC for scans and follow-up. The family has a 15-minute conversation with the oncologist and receives a clear message about the poor prognosis. Overwhelmed, the family returned home with the life-threatening diagnosis and an appointment to return in 6 weeks. Constipation and obstruction occurred, likely associated with the pain medication, 120 miles from the CCC. His primary care professional admitted him to the local small hospital where treatment focused only on the constipation without awareness of others involved in care. Then a small stroke occurred. What role did primary care have with the family, the patient, or care articulation with the CCC? The family was overwhelmed and had not shared the CCC’s plan of care. What would be the best practice for the CCC and the primary care office to meet the palliative care (at diagnosis) needs of the patient? What resources for the primary care professionals, the wife, and the family were needed? Who should coordinate this care?
A newly diagnosed patient enters an unfamiliar system of care often in strange and overwhelming locations and sees more professional providers in a day than he may have seen in a lifetime. Patients and families are overwhelmed and lost in a huge complex system they alone are expected to coordinate. What scientific knowledge do we have to support these care situations? What approaches result in coordinated quality cancer care? What are the standards of care? What are the expected outcomes for primary care? For cancer care?
In 2005, the Institute of Medicine released the report “From Cancer Patient to Cancer Survivor: Lost in Transition.”1 This report outlined challenges across the care continuum with a clear focus on survivorship. In this report,1 the importance of better integration between primary and cancer care was indicated as essential to ensure continuity, patient support, and improved quality of life. Seven years later, there remains limited attention to this interface.
Researchers2,3 have identified that problems exist at the interface of cancer care that include unmet patient information needs, psychosocial, and family needs. They describe a lack of communication between providers at transition points4 and a lack of clear responsibilities. Few interventions to promote quality patient outcomes have been described. But there are major research questions to examine at the interface between primary and cancer care:
* Validated metrics of a good interface or good coordinated care are needed.
* Oncology and primary care nurses should be surveyed to attain current and preferred roles in cancer care across the care continuum (surveys have been done of physicians). Who coordinates the care, who makes the referrals, who manages the comorbidities? What is the optimal interface between oncology and primary care nurses in care delivery? How does the environment of care support or impede bidirectional communication among providers and with the patient? We need to test interventions to determine what model produces the best patient-centered outcomes, the best coordinated care. We need to document that coordinated care improves outcomes.
* We need to identify factors that facilitate continued primary care involvement over the cancer care trajectory.
* We need to determine if families prefer that primary care professionals stay involved with cancer care to help with decisions, comorbid conditions, and psychosocial needs.
* Strategies to promote the role of the primary care nurse in managing comorbidities, psychological distress, and behavior changes are needed to achieve patient-centered care.
* How do patient-reported outcomes differ (ie, adverse effects, health-related quality of care, satisfaction, comfort) when there is a coordinated plan of care and communication between primary care nurses and oncology nurses?
Patients identify primary care nurses as important sources of information during cancer care.2,5 Future research must address coordination and integration of care if we are to meet the patients’ needs and achieve patient-centered cancer care. Much work remains to be done.
Barbara A. Given, PhD, RN, FAAN
College of Nursing
Michigan State University
East Lansing, Michigan
1. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2005.
2. Taplin SH, Clauser S, Rodgers AB, Breslau ES, Rayson D. Interfaces across the cancer continuum offer opportunities to improve the process of care. J Natl Cancer Inst Monogr. 2010; 2010 (40): 104–110.
3. Sussman J, Baldwin LM. The interface of primary and oncology specialty care: from diagnosis through primary treatment. J Natl Cancer Inst Monogr. 2010; 2010 (40): 18–24.
4. Grunfeld E, Earle CC. The interface between primary and oncology specialty care: treatment through survivorship. J Natl Cancer Inst Monogr. 2010; 2010 (40): 25–30.
5. Sada YH, Street RL Jr, Singh H, Shada RE, Naik AD. Primary care and communication in shared cancer care: a qualitative study. Am J Manag Care. 2011; 17 (4): 259–265.