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One in five cancer patients said they had received unfair treatment because of their finances, medical condition or race and ethnicity, according to a new collaborative study conducted by the University of Alabama- Birmingham (UAB) using data from the Patient Advocate Foundation (PAF), a national non-profit organization providing case management and financial assistance to people with chronic conditions.
The study used data from a national PAF longitudinal survey sent to adults with current or previous cancer treatment who had received PAF services from July 2019 to April 2020. A total of 587 cancer patients responded.
Of the 23% of respondents who said they had received unfair treatment, more than half (58%) said the treatment came from a doctor, nurse or health care provider. Less than half (46%) reported unfair treatment from an insurance company, 41% from the healthcare system, and 14% from a pharmacist.
When asked why they had been treated unfairly, respondents reporting unfair treatment because of their level of education, sex or sexual / gender orientation were rare. Instead, the most common reasons for unfair treatment were illness or condition (42%), income or ability to pay (36%), and race and ethnicity (17%). However, 50% of respondents who identified as Black, Indigenous or Colored (BIPOC) reported high distrust of medical providers.
“There are historical reasons why people may feel discriminated against in healthcare, but we have not properly explored how socio-economic factors affect patients’ perceptions of how they are treated,” said study co-author Nicole E. Caston, MPH, clinical data analyst in the Division of Hematology and Oncology at UAB. “I don’t think healthcare teams are aware that patients are feeling this – it’s really telling. “
Most of the survey respondents were women (72%) and about a third were from BIPOC. The most frequently reported cancers were haematological (32%) and breast (32%).
“Previous survey data collections have indicated issues with financial toxicity in our PAF patients for some time,” said Kate Gallagher, MPH, vice president of health services research at the Patient Advocate Foundation. “Seeing our recent data confirming not only the tangible ways in which it manifests itself – from bankruptcy to inability to pay for utilities – but also how financial problems can directly affect the patient-provider relationship was remarkable. . “
Co-author Gabrielle Rocque, MD, associate professor in the Division of Hematology and Oncology at UAB, agreed, noting: “The majority of people who reported experiencing discrimination reported having experienced it from from their provider or nurse. This adds a layer of complexity to the idea that providers should discuss costs with patients. These conversations need to be approached with nuance, so that patients feel like equal partners in the healthcare team and always treated with dignity.
The researchers compared the responses between those who reported fair treatment and those who reported unfair treatment. Respondents reporting unfair treatment were more likely to be unemployed / other (21% vs. 12%), to have private insurance (35% vs. 26%), to earn less than $ 48,000 per year (77% against 71%) and to report more mistrust among medical providers (57% against 24%).