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CancerCare Report Highlights Patient Struggles - Emotional, Financial, and Communication

Surabhi Dangi-Garimella, PhD
CancerCare's 2016 Patient Access and Engagement Report underscores barriers for patient access to care, as well as communication gaps with care providers, both of which have a significant impact on patient outcomes.
CancerCare, an organization that provides information and support services to cancer patients, has commissioned a report that presents the physical, financial, practical, and informational needs of more than 3000 cancer patients. The 2016 Patient Access and Engagement Report has tried to reflect barriers for patient access to care, as well as communication gaps with care providers, both of which have a significant impact on patient outcomes.

The advisory board that helped develop the report included healthcare providers and leaders within CancerCare. Patients who participated in the survey represented diverse ethnicity, income, education, geography, age, insurance, cancer type, and treatment stage. The following are some of the findings of the study:

Understanding Diagnosis
  • Majority of respondents did not have problems accessing diagnostic testing to confirm their diagnosis. They did not doubt the expertise of the diagnosing clinicians.
  • While 25% of younger patients (25 to 54 years) did not follow their physician’s recommendations because they disagreed with them, a majority patients cited cost as the reason.
    • White patients were less likely to speak with their physicians about this issue.
  • Patients spoke with physicians, nurses, religious leaders, social workers, physician assistants, or nurse practitioners about their cancer—minority patients (African American and Hispanic) more so than white.
  • A higher percentage of older patients were more likely to say they understood the conversation with their clinician.
Treatment Planning
  • Overall, patients seemed to feel a dearth of information on important aspects of their care plan.
  • Only 12% to 18% said they had information on clinical trial opportunities.
  • Less than 50% stated they were aware of the following:
    • Ability to work during treatment
    • Extent of home care
    • Impact of the disease and its treatment on emotional well being
    • Cost of care
  • Only 25% had access to a patient or nurse navigator.
  • Less than 50% got a second opinion on their treatment.
Communication With Care Team
  • Most respondents expressed satisfaction with their care coordination, understood their discussions with the care team, and could see them in a reasonable amount of time.
  • Younger (25 to 54 years) African American patients (73%) were more satisfied that their white counterparts (37%) with the level of interaction with their physician.
  • Nearly 20% of African American and Hispanic patients voiced serious communication problems with their clinical team.
  • Respondents were more likely to discuss lifestyle concerns with their primary care doctor rather than their oncologist.
Financial and Insurance Issues
  • Only 50% of respondents reported they understood their insurance coverage “completely” or “very well.”
  • Only about 33% of patients between 25 and 63 years of age continued to work full-time after their cancer diagnosis.
  • While 58% responded being distressed about their finances during treatment, younger patients (less than 64 years) reported that finances were never or rarely discussed.
  • 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
  • Thirty-five percent of 25-to-44 year olds were dissatisfied with how their care team prepared them for cancer-related symptoms and side effects.
  • While respondents mainly discussed their side effects with their physician, 40% reported not bringing it up because they did not want to bother the physician.
  • Absence of a caregiver to help with daily activities was reported by about 33% of respondents. 
Survivorship
  • Cancer was a source of stress for patients, especially among younger respondents.
  • Cancer diagnosis prompted 25-to-44 year olds to discuss end of life with family members, more than those older than 44.
  • Significant misconceptions about palliative and hospice care, irrespective of age.
“Cancer takes its toll in many ways, some of which last for years and cause debilitating distress for patients and families,” Patricia J. Goldsmith, CEO of CancerCare, said in a statement. “This report, reflecting the input of thousands of patients, sheds light on the important issues affecting patients’ lives during and beyond a cancer diagnosis.”

 
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