Care for oncology patients is not as patient-centered, accessible, coordinated, or as evidence-based as it could be, an Institute of Medicine report concludes.
The nation's cancer care delivery system is in disastrous shape because of poor quality measures, rising costs, an insufficiently trained workforce, treatments that don't work, poor clinician-patient communication, deficient palliative care support and the need for much better evidence of what types of patients will benefit.
Those are some of the conclusions from the Institute of Medicine's second major report on cancer care, "Delivering High-Quality Cancer Care, Charting a New Course for a System in Crisis."
"We found that cancer care is not as patient-centered, accessible, coordinated, or as evidence-based as it could be," said Patricia Ganz, MD, chair of the committee that wrote the report and an oncology specialist at UCLA School of Medicine and School of Public Health, during a teleconference Tuesday.
The system is "poorly prepared to meet the needs of" an estimated 1.6 million people diagnosed with cancer annually, in part because clinical trials of chemotherapy drugs almost always enroll people without other comorbid conditions. "The distribution (of who gets certain kinds of cancer) does not look like the population that actually has the disease."
Questioning Providers
The 315-page report, which differs greatly from one the IOM issued in 1999, also lists 40 questions it says patients should ask, and demand answers for, before going ahead with treatments for their cancer. For example, it urges patients to ask their clinicians:
- If I cannot be cured, will I live longer with treatment?
- How much longer?
- How does this treatment compare with other treatment options?
- Are there any side effects?
"If you have a physician or a team member that does not want to answer these questions, you need to find another set of providers," Ganz said.
The report is sponsored by The American Cancer Society; the American Society for Radiation Oncology; LIVESTRONG; The American College of Surgeons, Commission on Cancer; and the National Cancer Institute – National Institutes of Health, among other groups.
As an example of how the system doesn't work well, she said that for an advanced lung cancer patient, "we may have evidence for the first, second, or even the third line of chemotherapy, but there's no evidence for the fourth or fifth.
And most of the data available was not tested in that population, so adding additional morbidity and toxicity to somebody who is on a trajectory toward end-of life does not make sense. It's also very costly… and patients will end up in the hospital when they would rather be spending this time at home."
Provider Competency
Another issue threaded through the document pertains to the competency of care providers. There are accreditation programs, such as those run by the American College of Surgeons, and coping certification programs run by the American Society for Clinical Oncology.
"But what we're also talking about is health systems making sure that if there are nurses or aides on a ward taking care of cancer patients, that they know something about cancer. It's actually digging deep into the delivery system, and not just giving a professional accreditation for an organization."
The report lists 10 recommendations, each one followed by initiatives or actions that federal and other organizations should take to implement them.
Patient Engagement
1. The cancer care team should provide patients and their families with understandable information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of cancer care.
The report says the National Cancer Institute, Centers for Medicare & Medicaid Services and other public and private stakeholders should develop decision aids and make them available, and CMS should "design, implement and evaluate innovative payment models that incentivize the cancer care team to discuss this information with their patients."
2. In a setting of advanced cancer, the cancer care team should provide patients with end-of-life care consistent with their needs, values, and preferences.
To do this, the report says CMS should have payment models that incentivize cancer teams "to counsel their patients about advance care planning and timely referral to hospice care."
An Adequately-Staffed, Trained, and Coordinated Workforce
3. Members of the care team should coordinate with each other and with primary geriatric and specialist care teams to implement patients' care plans and deliver comprehensive efficient and patient-centered care.
To accomplish this, the report says, federal and state regulatory agencies should eliminate scope-of practice barriers to team-based care and academic institutions and professional societies should develop programs to train workforce in team-based care and promote coordination.
4. All individuals caring for cancer patients should have appropriate core competencies.
The report says healthcare organizations that deliver cancer care "should require" that team members "have the necessary competencies to deliver high-quality cancer care, as demonstrated through training, certification, or credentials."
Evidence-Based Cancer Care
5. Expand the breadth of data collected on cancer interventions for older adults and individuals with multiple co-morbid conditions.
The NCI, the Agency for Healthcare Research and Quality, and the Patient Centered Outcomes Research Institute should require researchers to study populations that mirror the age distribution and health risk profile of patients with the disease.
6. Expand the depth of data available for assessing interventions.
The NCI should work with other agencies to "develop a common set of data elements that captures patient-reported outcomes, relevant patient characteristics and health behaviors" collected from clinical trials and observational studies.
Health IT
7. Organizations should develop an ethically sound healthcare information technology system that enables real-time analysis of data from cancer patients in a variety of care settings.
Federal health agencies should support integration of IT systems of cancer and create incentives for clinicians to participate.
Quality Measurement
8. Develop a national quality reporting program for cancer care.
The Department of Health and Human Services should create a long-term strategy for public reporting of quality measures for cancer care and fund and direct the development of meaningful quality measures, with a focus on performance targets for institutions, practices and individual clinicians.
Accessible and Affordable Cancer Care
9. Reduce disparities in access to cancer care for vulnerable and underserved populations.
HHS should develop a national strategy that leverages existing efforts, supports development of innovative programs, disseminates effective community interventions and provides ongoing support.
10. Improve the affordability of cancer care by leveraging existing efforts to reform payment and eliminate waste.
Professional societies should publicly disseminate evidence-based information about cancer care practices that are unnecessary or where the harm may outweigh benefits. Also, CMS and other payers should develop payment policies that reflect evidence-based findings.