A national survey of people affected by cancer provides an in-depth examination of how families cope with cancer and highlights problems of health insurance and healthcare costs through the lens of individuals who have experienced this major illness. The results show how healthcare and health insurance systems can fail to protect people when they are most in need. Conducted jointly by USA Today, the Kaiser Family Foundation, and the Harvard School of Public Health, the survey shows that the disease's devastating impact often extends beyond an individual patient to affect entire families and sometimes causes financial crises, strained relationships, and physical and mental health issues for those who love and care for people diagnosed with cancer.
The survey finds that one in four families affected by cancer say the experience led the person with the disease to use all or most of their savings, and one in eight families say they borrowed money from relatives. The illness also made it harder for some individuals to find and keep health insurance, with about one in 10 people saying they couldn't buy health insurance because they were diagnosed with cancer and 6% saying they lost their coverage as a result of the disease. Having health insurance at all times during treatment helped to limit the financial consequences of a cancer diagnosis, but even individuals with consistent coverage faced difficulties. One in five used all or most of their savings, one in 10 borrowed money from relatives, and 9% were contacted by a collection agency. Among persons who did not have health insurance consistently during their illness, the financial burden was even greater. More than one in four said that they delayed or decided not to get treatment because of its cost-five times the rate reported by individuals who had health insurance consistently. Nearly half used all or most of their savings, four in 10 were unable to pay for basic necessities, one in three sought the aid of a charity or public assistance program, and 6% filed for personal bankruptcy.
Although most people report that employers treated them well after the diagnosis of cancer, 44% say that the family member diagnosed with cancer suffered problems at work related to their disease, including one in three who say the disease limited their ability to do their job, one in five who say it affected how others perceived their performance, one in 10 who had to change jobs, and one in 10 who were removed from a job because of their illness. Problems were most common among workers who earned less than $40,000, but they also affected higher earners.
The survey also finds that half of families experienced at least one problem related to coordination of care during the course of cancer treatment, including one in four who reported that they received conflicting information from different doctors or other professionals involved in their care, one in five who received duplicate tests or diagnostic procedures, and one in five who were confused by the medications their doctors prescribed. Other issues included leaving a doctor's office without answers to important questions about their care (15%) and medical records not reaching a doctor's office in time for an appointment (13%). Among survivors, most reported some positive impacts as a result of the cancer, and many say the experience changed their outlook on life in a positive direction. Still, many people reported stress and strain, including health problems for family members other than the person with cancer.
The National Survey of Households Affected by Cancer is a nationally representative survey of 930 adults aged 18 years and older who say they-or another family member in their household-have been diagnosed with or treated for cancer in the past 5 years (excluding nonmelanoma skin cancer). The survey was conducted by telephone between August 1, 2006 and September 14, 2006 and has a margin of sampling error of 3.6%.
People interviewed for this survey included people who currently have cancer or have had cancer themselves and family members. Questions about the cancer experience, treatments, and health insurance status were asked about the person with cancer specifically. For ease of reporting, findings are presented as if they were reported by the person with cancer.
USA Today has featured the survey results in a series of articles started in November 2006. A link to those articles and the full survey results and charts with key data are available online at http://www.kff.org/kaiserpolls/pomr112006pkg.cfm. The USA Today/Kaiser Family Foundation/Harvard School of Public Health Survey Project is a three-way partnership. USA Today, Kaiser, and Harvard jointly design and analyze surveys examining healthcare issues, with USA Today retaining editorial control over the content published by the paper.
The Kaiser Family Foundation is a nonprofit, private operating foundation dedicated to providing information and analysis on healthcare issues to policymakers, the media, the healthcare community, and the general public. The Foundation is not associated with Kaiser Permanente or Kaiser Industries. Harvard School of Public Health is dedicated to advancing the public's health through learning, discovery, and communication. For more information on the school, visit http://www.hsph.harvard.edu.