The 2016 CancerCare Patient Access and Engagement Report illustrates the many physical, emotional, financial, practical and informational needs cancer patients experience during and after clinical treatment. It reflects the perspectives of more than 3,000 patients diverse in ethnicity, income, education, geography, age, insurance, cancer type and treatment stage. CancerCare conducted this study to learn more about how patients experience life after a cancer diagnosis, in order to inform our program development and most accurately represent and address the needs of patients throughout their continuum of care and after clinical treatment is complete. Through fielding six national surveys this report:
- Defines engagement specifically as it relates to cancer patients
- Identifies barriers to cancer patient engagement with care providers
- Characterizes the financial, emotional, social and quality-of-life costs of cancer to patients and families
- Recommends strategies and programs to promote cancer patient access and engagement
View some of the survey findings:
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 age 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.”
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 of 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.
Communication With Health Care Team
- The majority of respondents were satisfied with their clinical care coordination, understood discussions with their providers about their cancer and its treatment, and were able to connect with their health care team in a reasonable amount of time.
- Respondents had positive opinions regarding the conversations and relationships they have with their physicians, especially those patients older than age 55.
- African American respondents ages 25 to 54 years were significantly more likely than white patients to report their physician listened to their concerns and asked for their opinions (73% versus 37%, respectively).
- Among African American and Hispanic patients, about one-fifth reported having serious communication problems with their clinical care team, including a lack of translation services (27%); difficulty understanding what their doctor said about their treatment (19%); and discomfort talking about how cultural, religious, and personal values affect their treatment (21%).
- A majority of respondents considered their oncologists and primary care physicians to be part of their cancer care team; nearly half included nurses
- Respondents generally chose to discuss treatment-related issues with their oncologists. For lifestyle concerns, they preferred to talk with their primary care physicians.
- Fewer than half were asked by a care team member whether they were feeling distressed by their cancer or its treatment; they were rarely referred to counseling or other professionals for support.
Financial and Insurance Issues
- Only about one-half of the respondents reported understanding their health insurance coverage for their cancer care “completely” or “very well”.
- Twenty-five percent of respondents between 25 and 64 stopped working during active treatment, and 13% switched from full-time to part-time. Only one-third continued working full-time after their cancer diagnosis.
- Despite 58% of respondents reporting being distressed about their finances during treatment, 25% of those younger than 64 said their care team never considered their financial situation during treatment planning; 34% said it was only “sometimes” considered.
- Many respondents used care-altering strategies to reduce costs. Twenty-nine percent said they skipped doctors’ appointments; 38% postponed or did not fill drug prescriptions while 34% skipped doses; 30% ordered medications online from sources outside the US; and 31% cut oral medications in half.
- One-third of respondents ages 25 to 54 reported cutting back on groceries and transportation; and/or borrowed money. One-quarter applied for financial assistance; 21% missed a utility bill payment; 17% missed a rent or mortgage payment.
- The average monthly out-of-pocket spending for treatment-related expenses among non-elderly respondents was $1,112, nearly twice as much as those 65 and older.
Symptoms, Side Effects and Quality-of-Life
- Athough the majority reported feeling satisfied with how well their care team prepared them for cancer-related symptoms and side effects, 35% of those ages 25 to 44 reported feeling “very” or “somewhat dissatisfied”.
- Respondents most often discussed symptoms and side effects with their physicians and to a lesser extent with other care team members. Nearly 40% did not report symptoms or side effects because they did not want to “bother” their doctor.
- Nearly 4 in 10 respondents ages 25 to 44 were required by their insurers to follow a “first fail” regimen in managing symptoms and side effects. For most patients, this forced them to use a non-preferred medicine for 2 to 3 months.
- One-quarter to one-third of respondents said their ability to perform day-to-day activities, such as working, exercising, entertaining friends and family, caring for children, and preparing meals was dramatically compromised.
- A third reported they did not have a caregiver to support them through treatment and help with their activities of daily living and household responsibilities
Survivorship
- Women were much more likely than men to report that cancer had a positive effect on their relationships with family members and friends.
- Cancer caused significant levels of stress for respondents, with the impact of cancer on family members causing the most distress. Younger patients experience significantly higher levels of distress than older patients.
- Regardless of ethnicity, those 25 to 54 experienced similar levels of distress from their cancer diagnosis.
- A cancer diagnosis was more likely to prompt 25 to 44-year-olds to discuss end of life with family members than those 45 and older, where fewer than half had not communicated their wishes on these topics to family or friends.
- Patients of all age groups had widespread misconceptions about both palliative and hospice care.
The advisory board for this report includes the following renowned experts in oncology and patient engagement:
View Advisory Board
- Walter Baile, MD
Professor, Department of Behavioral Science, Division of OVP, Cancer Prevention and Population Sciences; Director, Program for Interpersonal Communication And Relationship Enhancement (I*CARE), University of Texas MD Anderson Cancer Center; Houston, TX
- Ethan Basch, MD, MSc
Director, Cancer Outcomes Research Program; Associate Professor, Medicine and Public Health, UNC Lineberger Comprehensive Cancer Center; Chapel Hill, NC
- Jimmie Holland, MD
Wayne E. Chapman Chair in Psychiatric Oncology
Memorial Sloan Kettering Cancer Center; New York, NY - Marcia Kean, MBA
Chairman, Strategic Initiatives
Feinstein Kean Healthcare; Cambridge, MA - Sandra Kurtin, RN, MSN, AOCN, ANP-C
Adjunct Associate Professor
The University of Arizona Cancer Center; Tucson, AZ - Terry Langbaum, MHS
Chief Administrative Officer
Johns Hopkins Kimmel Cancer Center; Baltimore, MD - Michael Parisi, MBA
President, CancerCare Board of Trustees
Managing Partner, Ogilvy CommonHealth Worldwide; New York, NY - Lee Schwartzberg, MD, FACP
Chief, Division of Hematology Oncology; The University of Tennessee Health Science Center, Medical Director, The West Clinic; Memphis, TN
- Thomas Workman, PhD
Principal Communication Researcher and Evaluator
American Institutes for Research; Washington, DC - Michael K. Wong, MD, PhD, FRCPC
Berle and Lucy Adams Chair in Cancer Research, Professor of Clinical Medicine, Section Chief, Solid Tumor; USC Norris Comprehensive Cancer Center; Los Angeles, CA
- Patricia Goldsmith
Chief Executive Officer, CancerCare; New York, NY
- Ellen Sonet, MBA, JD
Chief Strategy and Alliance Officer, CancerCare; New York, NY
The project is being made possible by AbbVie, Amgen, AstraZeneca, Bristol-Myers Squibb, Genentech, Helsinn Therapeutics, Gilead Sciences, Incyte Corporation, Janssen Oncology, Lilly, Merck, PhRMA, and Pfizer.
For more information, please contact Ellen Sonet at esonet@cancercare.org.