Where Cancer Care Falls Short, According to Patients

Megan Brooks

May 12, 2016

US cancer patients want more information about their illness, treatment (options, benefits, and risks), clinical trials, insurance coverage, and where to get emotional, financial, and practical support, according to a new report from the nonprofit group CancerCare.

The 2016 Patient Access and Engagement Report reflects the perspectives of a diverse group of more than 3000 cancer patients who completed surveys about their experience.

"One very clear finding from several of our surveys is that while patients feel their clinical teams do an excellent job of caring for them medically, they aren't getting the information they need to make informed decisions about treatment," Ellen Sonet, JD, MBA, chief strategy and alliance officer for CancerCare, New York, told Medscape Medical News.

About one third of respondents reported having inadequate information about the benefits, potential side effects, and the goals of their treatment plan. More than 80% said they did not have enough information about clinical trials.

"In this context, how confident are we that treatment planning is based on shared decision-making? We all need to think long and hard about how to more effectively engage patients in treatment planning and informed decision-making," Sonet said.

Fewer than half of respondents said they had enough information about concerns such as working during treatment (43%), the emotional impact of having cancer and undergoing treatment (38%), and the financial obligations associated with their care (36%).

"Another important finding that goes to the heart of the physician-patient relationship concerns patients' reporting of symptoms and side effects," Sonet noted. About half of cancer patients said they downplay their symptoms and side effects in conversations with their doctors, and 40% did not report them because they did not want to "bother" their physicians, she explained.

Overall, many patients surveyed felt that their physical, emotional, financial, and social "costs" of cancer go unaddressed and cause debilitating and long-lasting distress for themselves and their loved ones.

Most cancer patients followed their physicians' advice on diagnostic tests, although 25% of those aged 25 to 54 years disagreed with some of their physician's advice for diagnostic testing and did not follow it. Most of these patients cited cost as the reason. Fewer than half said they discussed the cost of follow-up testing with their physician.

Most cancer patients said they were satisfied with clinical care coordination and were able to reach members of their healthcare team in a reasonable amount of time. But about 20% of African American and Hispanic patients reported communication problems with their providers, including a lack of translation services and difficulty understanding what their physicians said about their treatment.

When it comes to lifestyle concerns, such as diet and exercise, sexuality and intimacy, work, emotional distress, and end-of-life issues, cancer patients prefer talking with their primary care physician. Yet only rarely were cancer patients referred by members of their care team to counseling service or other professionals for support.

Financial, Psychological Burden

As for the financial side of cancer care, only about half of respondents said they understood their health insurance coverage for their cancer care "completely" or "very well." One quarter of those aged 26 to 64 years said their medical care team never considered their financial situation during treatment planning, and 34% said it was only "sometimes" considered.

Yet, more than half (58%) felt distressed about their finances during treatment, and 75% of those aged 25 to 54 years said cancer caused them financial hardship; 30% said they cut back on groceries or transportation to afford treatment.

"Finances need to become part of the conversation between patients and some member of the care team, though not necessarily the doctor. Patients in our survey reported that support from care team members regarding finances was generally very helpful," Sonet told Medscape Medical News.

Receiving a diagnosis of cancer caused distress for most patients, especially younger patients, but only about half reported that their care team regularly asked about their level of distress. A cancer diagnosis prompted end-of-life discussions with family members more often in 25- to 44-year-olds than in older patients. Patients of all age groups had misconceptions about palliative and hospice care.

"A cancer diagnosis often causes patients and families considerable distress in numerous aspects of their lives. There are many resources available to help patients financially, psychosocially, and practically, but patients need to know about them or to be referred by members of their care team," Sonet told Medscape Medical News. "Oncology professionals should screen patients for distress at every visit, become informed about available resources, and learn how to connect patients to the support services they need.

"CancerCare conducted this study to learn more about how patients experience life after a cancer diagnosis in order to inform its program development and most accurately represent and address the needs of patients throughout their continuum of care and after treatment is complete," Sonet said.

"We know an engaged patient is more likely to experience better outcomes and a higher quality of life. So one of the primary goals for conducting a study of this breadth and depth was to give physicians specific and practical information that can help them interact and connect with their patients in more meaningful and effective ways," she added.

The complete report is available online.

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