Cost of Care National Pilot Survey
Managing cancer can create financial strain and related stress that makes patients and caregivers vulnerable to anxiety, depression and other mental health problems.
The 2007 Institute of Medicine’s Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs reported that psychosocial health care is not part of standard cancer care and created guidelines to help ensure appropriate care is consistently provided.
Despite the availability of financial assistance programs, the Cancer Support Community Research and Training Institute and Genentech created the Cost of Care National Pilot Survey to learn more about the burden of the cost of cancer care, the impact on patients and families and why people do not use available resources.
This unprecedented survey differs from other research efforts in that it:
· Addresses financial and psychosocial barriers to access
· Captures “lived experience” of what it means to struggle with cost of cancer
· Contains a standardized measure to assess symptoms of post-traumatic stress related to dealing with the financial burden of cancer care
Pilot Survey Results
The 105 respondents were ethnically diverse and educated. More than half of patients were employed. Twenty-five percent of patients had (pre-tax) household income of less than $20K; 17 percent had a household income of less than $40K. Eighteen percent of caregivers had a household income of less than $20K.
Pilot survey feedback identified numerous barriers to obtaining financial assistance that fall into these categories:*
· Patients and caregivers find the burden of care overwhelming
· Cancer care includes unexpected costs
· Managing cancer can change patient/caregiver behavior
· Patients/caregivers can harbor secret thoughts/feelings about cancer costs and related hardships
· Being able to afford care is a constant concern
· Awareness of financial assistance programs is low
Costs of Cancer
To cover the unexpected costs of cancer, respondents cancelled vacations, depleted savings, accepted loans from family/friends and worked extra jobs. Twenty-three percent used pharmaceutical assistance programs to pay for unexpected costs.
To reduce costs, nearly half of all patients delayed seeking psychological support. Others skipped doses of medicine or chose a less expensive, less effective treatment.
Pharmaceutical Assistance Programs
Patients and caregivers reported the Internet and social workers, respectively, as the best sources of financial assistance information.
About one-third of patients (34 percent) used a pharma or co-pay assistance program. Nearly half (46 percent) of these respondents reported that the programs were difficult to use. Almost half (45 percent) of patients were not aware of them.
· Barriers to access included strong belief that they would not qualify for assistance, potential scrutiny of finances and being too overwhelmed to take action.
Emotional Impact of the Cost of Cancer
The trauma of cancer is complex. It includes significant external factors (financial burdens) and internal ones (what is happening in the body) that are not visible to others.
· The emotional impact of the cost of cancer is significant and has neither been fully understood nor fully appreciated by the health care community before.
· This survey includes a standardized measure that assesses symptoms of post-traumatic stress related to dealing with the financial burden of cancer care
Survey respondents reported levels of post-traumatic stress similar to what African-American survivors of Hurricane Katrina experienced and greater than those who witnessed and were present in lower Manhattan on 9/11.**
These survey findings show that the health care community has a tremendous opportunity to take action and provide meaningful support for cancer patients and their families.
The overall survey finding is that those with the greatest need do not seek assistance due to the trauma they are experiencing. They shut down instead of pursuing resources designed to make life easier.
The pilot data make a strong case for the need to learn how to comprehensively manage cancer trauma. Additional research is needed. In the meantime, results will be presented at medical meetings, and pilot data can be used to raise awareness of the need and build new training programs.
The long-term vision for this work is to use the survey to ultimately improve the quality of life for cancer patients and caregivers and ensure equal access to gold standard care.
*These results reflected initial focus group and 1:1 interview findings.
** Chen, Keith, Airriess, Li and Leong (2007); Journal of the American Psychiatric Nurses Association, 257-266. “Economic Vulnerability, Discrimination, and Hurricane Katrina: Health Among Black Katrina Survivors in Eastern New Orleans.”