Science is yielding more options than ever to treat cancer. That’s the good news.
The bad news is that as cancer care becomes more complex, so do choices for patients and their families. How much does a wonder drug help patients if they can’t afford it or if the adverse effects (AEs) make quality of life poor or if it forces them to spend down retirement savings or puts the family home in foreclosure?
These are the real challenges facing patients that are now being studied and measured by the Cancer Support Community, according to Joanne Buzaglo, PhD, senior vice president of the group’s Research and Training Institute.
Buzaglo noted that the idea of “value” in cancer care has gained attention in recent years. The American Society of Clinical Oncology, the National Comprehensive Cancer Network, and Peter Bach, MD, MAPP, of Memorial Sloan Kettering Cancer Center have all developed value frameworks.1
But simply looking at a drug’s cost compared with how much it extends a person’s life misses the mark if the patient’s perspective is left out.
The Research and Training Institute works to collect that patient perspective through its Cancer Experience Registry that develops data that can lead to system change. Buzaglo described how the registry collects information on patient demographics, cancer-related distress, symptom management, AEs, and the clinical trial experience and how cancer affects a person’s ability to work. Of great importance, it collects information on financial toxicity and shared decision making and planning.
She shared data on the top 10 concerns among cancer patients in the registry, which included eating and nutrition (62%), remaining physically active (55%), worrying about the future (53%), feeling too tired (50%), and having sleep problems (46%). Nearly half of cancer survivors (47%) are at risk for clinically significant levels of depression.
What causes this? Communication gaps with the healthcare team don’t help, Buzaglo said:
What is value?
- 1 in 3 patients said their healthcare team did not explain short-term AEs
- 52% received guidance on long-term side effects of treatment, which means nearly half did not
- 14% did not share AEs and symptoms
The term is in the eye of the stakeholder, Buzaglo said, and the patient’s view is often missing. “By understanding how patients define value, we can identify strategies to better engage the patient in value-based cancer care,” she said.
The institute asked patients, “When considering your cancer experience, how would you define value?” and the results led to 2 reports: findings on 769 patients with metastatic breast cancer (MBC) and comparative findings in MBC and breast cancer.
It turns out that value not only means different things to differ- ent people, but sometimes that meaning has nothing to do with a patient’s health: When making treatment decisions, 93% of patients consider quality of life, 79% consider length of life, and 74% consider the impact a decision has on their family. And although patients are increasingly involved in decisions (66% said they were very involved), less than half (46%) felt they had sufficient knowledge to make good choices and only 38% felt fully prepared.
Impact on finances.
Buzaglo and her team’s research also showed that while three-quarters of patients said they knew what clinical trials are, 80% said they were uncomfortable being randomly assigned to a treatment andnd 77% say their insurance would not cover the cost of treatment.
The financial burden of cancer care weighs on patients: 58% of registry patients said it had significantly affected them and 37% were experiencing anxiety. Yet the topic of financial burdens presents the greatest communication gap between the care team and patients: 73% said they had not discussed their financial concerns with their healthcare providers, but they were making significant trade-offs or cutting corners on care:
Cancer support source.
- 30% had depleted their savings
- 13% had applied for or used public assistance
- 17% put off a complementary appointment, such as one to a physical therapist
- 11% postponed doctors’ appointments
- 11% postponed filling prescriptions
- 5% had taken an extra job while undergoing cancer treatment to pay medical costs
Buzaglo said this Web-based program was created by the Cancer Support Community, incorporating its research findings into a screening tool to evaluate distress and make referrals to improve quality of life and health outcomes and help patients deal with the cost of care.
A new tool called VOICE (Value Outcomes in the Cancer Experience) is being tested with patients identified in the cancer registry. VOICE would be focused on the future and what patients want to achieve with their treatment.
Buzaglo posed these questions: What if patients were screened for the outcomes that were important to them? What if healthcare professionals were paid for properly informing patients?
Finally, she asked, what if reimbursement was tied not to giving patients drugs, but to giving them the outcomes they sought?