Patient preference for information about expensive anti-cancer drugs (EACD) that are potential treatment options.
Mileshkin LR., Agalianos E., Schofield P., Levine M., Savulescu J., Thomson J., Jefford M., Zalcberg J.
6533 Background: New developments in cancer have led to many new treatment options, which may only be available at significant personal cost to the patient. We previously reported that up to 41% of medical oncologists do not discuss EACD with patients, primarily because of concern about causing the patient distress. We sought to obtain the views of the general public about this issue. METHODS: A cross sectional survey was conducted by telephone of a random sample of adults aged ≥18, stratified by area with quotas controlled by gender and age to be representative of the Australian population. Respondents were asked demographic and financial questions, and about their personal experience of cancer. Their views were sought about a hypothetical scenario in which they were diagnosed with incurable cancer and an EACD (out-of-pocket cost of US$25,000) could prolong median survival by 4-6 months if given with standard chemotherapy. RESULTS: Responses were obtained from 1,255 people (49% male) of whom 47% preferred shared medical decision- making. 137 people (11%) had an existing cancer diagnosis and 686 (54%) had experienced cancer in an immediate family member. 91% wanted to be told by their doctor about the EACD, although only 52% were prepared to pay for it. 68% believed that the government should pay. Cost would be a significant financial burden for a third of those willing to pay. People were significantly more likely to want to be informed if they were younger, employed, tertiary-educated or had higher income levels (p<0.05). People were more willing to pay if the drug could improve quality of life though not survival (71%), or there was no effective standard treatment (76%). Responses did not vary with the person's personal experience of cancer. Of the 9% who did not wish to be informed, half were concerned about distress to themselves or their family (n=70-80 across scenarios). CONCLUSIONS: The general public wants to be informed about EACD as potential treatment options, even if they are not willing or readily able to pay for them. Concerns of medical oncologists that people do not want to be told about EACD because such discussions may cause distress apply only to a minority. Discussions related to EACD should occur as part of standard practice. No significant financial relationships to disclose.