Many patients with cancer experience poor health-related quality of life and poor satisfaction with their cancer care due to limited or no understanding of their prognosis, undertreated symptoms, high rates of emergency department and hospital use, and low palliative care and hospice use. Many studies have shown that communication between patients and providers regarding patients’ values, preferences for care, and symptom burden improves patient and caregiver health-related quality of life and satisfaction with care by ensuring that the care patients receive is consistent with their preferences and needs.
Many studies, however, show that the current way cancer care is provided could be improved and better meet the needs of patients and their caregivers. Currently, cancer care clinicians do not have enough time to address the needs of patients and their caregivers or provide adequate counseling services, leaving many with unaddressed questions, symptoms, and concerns. Internet website tools delivered through the electronic health patient portal and team-based approaches can greatly reduce these cancer care delivery gaps. However, it is unknown which approach is most patient-centered and effective.
The proposed research aims to compare two effective approaches. One approach will involve the use of internet tools that include access to an online educational website (Prepare for your Care) and an online symptom questionnaire, that patients receive every week for the first four months after their diagnosis and every other week thereafter through their electronic health record patient portal. The other approach will use the team-based approach, Patients Activated in Cancer care through Teams (PACT), which integrates a health educator into the cancer care team to assist patients with understanding and communicating their goals, values, and symptoms with their care teams and caregivers.
The PACT intervention provides patients with customized education and guidance through ongoing discussions by telephone with their health educator and cancer teams to ensure that their needs are met. The project will compare the effectiveness of these two approaches on health-related quality of life and secondarily on patient activation, satisfaction with care, decision making, healthcare use and documentation of goals of care and symptom discussions. Each outcome will be measured through interviews using validated surveys with each patient at the time they are enrolled and again at three and 12 months post-enrollment as well as through electronic health record review.
The project will be conducted in partnership with patients ages 21 and older who are newly diagnosed with cancer and receiving care at one of 24 oncology clinics across the United States, including six Veterans Affairs cancer clinics, 14 community oncology practices, two county-hospital systems, and two academic oncology clinics. Each aspect of the proposal was designed by patients diagnosed with cancer, caregivers who had lost their loved ones to cancer, cancer care providers including nurses, physicians, social workers, nutritionists among others, and large healthcare payer organization executives. Each aspect of the project will be overseen by an advisory board that includes these stakeholders as well as policy makers and national cancer care organizations and a local clinic study team at each of the 24 sites comprised of a patient, caregiver, nurse, and oncologist as well as a palliative care specialist.