Discussing Expensive An/cancer Drugs – A Survey Of The Opinions Of Pa/ents With Advanced Cancer Linda Mileshkin 1,2 , Edward Livshin 2 , Mark Voskoboynik 2 , Emilia Agalianos 2 , Penelope Schofield 1,3 , Alan Herschtal 4 , Ian Collins 2 , Aparna Rao 2 , Damien Urban 2 , Damien Kee 2 , George Au‐Yeung 2 , Sandra Harvey 2 , John Zalcberg 1,2 1 Faculty of Medicine, DenRstry, and Health Sciences, University of Melbourne, Melbourne, Australia; 2 Division of Cancer Medicine, Peter MacCallum Cancer Centre, East Melbourne, Victoria, Australia; 3 Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, East Melbourne, Victoria, Australia; 4 Centre for BiostaRsRcs and Clinical Trials , Peter MacCallum Cancer Centre, East Melbourne, Victoria, Australia Background: Novel cancer treatments are increasingly available but not subsidized, and come at considerable financial cost. We have previously reported that although the general public want to be informed about these expensive anRcancer drugs (EACDs), Australian medical oncologists commonly do not discuss them because of concern about causing distress. We aim to evaluate the views of paRents with cancer about this issue. Methods: Eligible paRents with incurable cancer completed a quesRonnaire regarding their views about four hypotheRcal scenarios involving an EACD (out‐of‐pocket cost A$30,000). The four scenarios described EACDs associated with either improved overall survival of 4‐6 months (OS), encouraging response rate (RR) in a treatment‐refractory situaRon, improved treatment tolerability/quality of life (QOL), or an improvement in progression‐free survival of 4 months (PFS). An interim analysis is presented. Results: Fiey‐nine paRents (response rate: 97%) completed the survey. Median age of 61 (range 37‐83) with 35 (59%) female. 55 paRents (93%) wanted their oncologist to discuss a relevant EACD with them but only 6 (10%) have had such a discussion. The majority wanted their oncologist to discuss the 4 EACDs: improved OS = 75%, encouraging RR = 88%, bemer QOL = 92%, improved PFS = 93%. However, a smaller percentage wanted to actually receive the EACDs (49–64%), or consider paying for them (25–37%). Those not wanRng discussion were mostly concerned about themselves or family being distressed about not being able to afford the treatment. Thirty‐four (58%) paRents reported out‐of‐pocket expenses associated with their cancer care, with 9/59 (15%) reporRng a moderate‐significant financial burden. Conclusion: Most paRents would like the opportunity to discuss relevant EACDs with their oncologists and a significant minority would be prepared to pay for such treatments. Such discussions need to be handled sensiRvely given that some paRents are already facing significant financial burden. Eligible paRents with a diagnosis of advanced cancer (either breast, colorectal, lung, head and neck, gynaecological cancer or unresectable stage III or IV melanoma), for at least three months that are either receiving acRve treatment or supporRve care with palliaRve intent were consented and completed a quesRonnaire regarding their views about four hypotheRcal scenarios (below). We present an interim analysis of these results. Four Hypothe/cal Scenarios : Scenario A : An EACD shown in a phase III study involving people with metastaRc cancer to result in an improvement of median overall survival of five months. This was based on a study of trastuzumab in combinaRon with chemotherapy for women with metastaRc breast cancer. Scenario B : An EACD shown in a phase II study (no phase III data available) involving paRents with a malignancy resistant to all other forms of treatment, to result in a high objecRve tumour response. This scenario was based on imaRnib in gastrointesRnal stromal tumours (GIST). Scenario C : An EACD shown in a phase III study to result in a similar survival benefit to standard chemotherapy, but with significantly improved paRent tolerability – based on a study of gemcitabine/cisplaRn versus ‘MVAC’ combinaRon chemotherapy for paRents with metastaRc bladder cancer. Scenario D : An EACD shown in a phase III study to result in an improved progression‐free survival, when added to standard chemotherapy compared with chemotherapy alone. No overall survival benefit – based on a study of bevacizumab or placebo added to a standard course of carboplaRn and gemcitabine for six cycles, followed by maintenance bevacizumab or placebo in paRents with advanced ovarian cancer. Response Scenario A No. (%) Scenario B No. (%) Scenario C No. (%) Scenario D No. (%) Yes 44 (75) 52 (88) 54 (92) 55 (93) No 7 (12) 2 (3) 3 (5) 1 (2) Unsure 7 (12) 3 (5) 0 (0) 1 (2) Unknown 1 (2) 2 (3) 2 (3) 2 (3) Table 1 . Ques/on 1: Would you want your doctor to tell you about the drug? 1. Mileshkin L, Schofield PE, Jefford M, et al. To tell or not to tell: the community wants to know about expensive anRcancer drugs as a potenRal treatment opRon. J Clin Oncol 2009;27:5830‐7 2. Thomson J, Schofield P, Mileshkin L, et al. Do oncologists discuss expensive anRcancer drugs with their paRents? Ann Oncol 2006;17:702‐8 3. Jefford M, Savulescu J, Thomson, J, Schofield P, Mileshkin L, Agalianos E, Zalcberg J. Medical paternalism and the pracRce of discussing high‐cost unsubsidised drugs with paRents. BMJ 2005 Nov 5:331(7524):1075‐7 Response Scenario A No. (%) Scenario B No. (%) Scenario C No. (%) Scenario D No. (%) Yes 30 (51) 38 (64) 29 (49) 35 (59) No 6 (10) 6 (10) 12 (20) 7 (12) Unsure 19 (32) 12 (20) 17 (29) 7 (12) Unknown 4 (7) 3 (5) 1 (2) 2 (3) Table 2 . Ques/on 2: Would you want to receive treatment with the new drug? Response Scenario A No. (%) Scenario B No. (%) Scenario C No. (%) Scenario D No. (%) Yes 18 (31) 22 (37) 15 (25) 18 (31) No 12 (20) 11 (19) 17 (29) 11 (19) Unsure 28 (47) 22 (37) 25 (42) 28 (47) Unknown 1 (2) 4 (7) 7 (12) 2 (3) Table 3 . Ques/on 3: Would you be prepared to pay to receive treatment with the new drug? Response Scenario A No. (%) Scenario B No. (%) Scenario C No. (%) Scenario D No. (%) Easily affordable 27 (69) 24 (64) 22 (56) 20 (53) If I was younger 11 (28) 7 (19) 7 (18) 6 (16) If I had young dependants 15 (38) 12 (32) 11 (28) 12 (32) If drug gave >4‐6 months survival advantage 18 (46) 16 (43) 21 (54) 20 (53) If possibility of cure 32 (82) 27 (73) 30 (77) 30 (79) $20,000, not $30,000 7 (18) 2 (5) 2 (5) 2 (5) $10,000 not $30,000 7 (18) 5 (9) 5 (13) 5 (13) $5,000 not $30,000 21 (54) 20 (54) 20 (51) 19 (50) Table 4 . Ques/on 4: If your answer to ques/on 3 was ‘No’ or ‘Unsure’ – would any of the following change your response? (all applicable op/ons selected) 58% 32% 10% Pa/ents that currently have out‐of‐pocket expenses associated with cancer care Yes No Not known 39% 24% 12% 3% 0% 22% Financial burden of out‐of‐pocket expenses None Mild Moderate Significant Catastrophic Not known • Expensive anR‐cancer drugs (EACDs) were defined as medicaRons used to treat cancer that are not currently funded by the federal government. • There is limited informaRon available addressing the views of people affected by cancer about communicaRon regarding EACDs. • In our prior telephone survey the majority of the general public (91%) would want to be informed about available EACDs, parRcularly if the drug were to improve survival by up to 6 months. More than half of respondents suggested they would be willing to pay for these drugs, especially if treatment were to improve quality of life, or if there was no available remaining standard treatment 1 . • The subset of the community surveyed with a prior history of cancer (n=137) also showed that most would like to be fully informed about these drugs by their doctor, even if they were unable to pay for them. However, many of these paRents reported a past history of skin cancer which may have been cured by a simple excision. • In our prior survey of medical oncologists up to 41 % of oncologists reported not menRoning unsubsidised EACDs in their consultaRons, mainly because of concern about such discussion causing distress to the paRent and/or the doctor. Such pracRces might be considered paternalisRc 2,3 . • Our study aims to gain vital informaRon about the attudes to EACDs from paRents with advanced, incurable cancers. The purpose of this is to generate recommendaRons about how oncologists should communicate with paRents about EACDs in clinical pracRce and inform the development of future communicaRon and educaRonal tools about this issue. Background Abstract References Methods Results Results Figure 1 . Propor/on of pa/ents wan/ng to be told about new drug compared to results from prior surveys of general public and medical oncologists Figure 2 . Financial burden of cancer care Conclusion • The majority of paRents with advanced cancer surveyed would like the opportunity to discuss relevant EACD with their oncologists but a significant minority do not. • Most paRents would also like to receive treatment with the EACD and a significant minority of paRents are willing to pay for this treatment. • Willingness of pay among paRents was much lower than that reported by the general public and it is clear that a proporRon of our paRents are already facing a financial burden as a result of their cancer care. • It is anRcipated that our completed analysis, with a larger number of paRents will help inform and guide our future clinical pracRce with regards to this sensiRve issue. 0 10 20 30 40 50 60 70 80 90 100 Scenario A Scenario B Scenario C General public PaRents Medical Oncologists who would discuss drug if paRent had to pay Scenario D not used in prior surveys Medical Oncologists responses were similar to paRent responses if the drug was available on the PBS