Landmark Study Provides Insight into Information Gaps for Cancer Patients that Affect Informed Treatment Decision Making

Posted on June 1st, 2016 by

Most Cancer Patients Are Inadequately Informed about Clinical Trials and Do Not Seek a Second Opinion

According to a recent report, a majority of US cancer patients feel inadequately informed about clinical trials and do not seek a second opinion. While two thirds feel satisfied with the information and attention of their cancer care team, additional information on the rationale for their selected treatment, the ability to continue working, and their overall cost of care could be improved. A quarter of patients age 25-54 disagreed with and did not follow their physician’s recommendations. Black and Hispanic patients were more likely than their white counter parts to discuss these issues with their doctor.

CancerCare recently published a landmark study that provides a comprehensive view of how people throughout the US experience life with and beyond cancer. Three thousand adults diagnosed with cancer participated in the study, which consisted of six surveys on real world topics that affect patients everyday:

  • Understanding the diagnosis of cancer
  • Participation in treatment decisions and planning
  • Communication with the care team
  • Financial and insurance issues
  • Symptoms, side effects, and quality of life
  • Survivorship

Key issues highlighted from the study included gaps in knowledge for patients in understanding their diagnosis as well as vital information needed to make informed treatment decision making.

Full survey results are available at

Key Takeaways: Understanding the Diagnosis of Cancer

  • Nearly all the respondents could easily access diagnostic testing to confirm their diagnosis and reported having confidence in the expertise of the diagnosing clinicians.
  • One-quarter of respondents ages 25 to 54 disagreed with some of their doctors’ recommendations and did not follow them. The majority cited cost as the reason.
  • Among those ages 25 to 54 years however, one-quarter of white patients and two-thirds of African American and Hispanic patients talked with their physician about this issue.
  • Within a few days of learning they had cancer, patients spoke with physicians, nurses, religious leaders, social workers, physician assistants, or nurse practitioners about their cancer. African American and Hispanic patients ages 25 to 54 had 35% more conversations with the medical team than their white counterparts.
  • Most respondents said they understood the conversations they had with their clinicians though older patients were significantly more likely than younger patients to say they understood conversations “a lot” or “extremely well.”

Key Takeaways: Treatment Planning

  • Many respondents reported not having enough information about important aspects of their cancer and its treatment. Only about two-thirds reported having enough on the benefits or goals of their treatment, the possible side effects, and the reasons why the plan was recommended.
  • Regardless where they were treated, only 12% to 18% of respondents to this survey felt adequately informed about clinical trial opportunities.
  • Less than half had adequate information on whether they would be able to continue working during treatment, how much home care was required, the emotional impact of having cancer and its treatment, and how much of the cost of care would be their responsibility.
  • Fewer than half of respondents got a second opinion about their treatment plan.
  • Only a quarter had access to a patient or nurse navigator.
  • For most aspects of care, 60% to 80% of respondents reported being satisfied with the amount of attention paid by their care team. Patient satisfaction levels were low, regarding team attention to clinical trial opportunities and new treatment options.


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Tags: All Cancer Types, cancer, Cancercare, clinical trials, communication, diagnosis, News, patient opinion, planning, treatment

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