An investigation of patient experience with and perceptions of generic TKIs for the treatment of CML.

Thank you everyone that contributed to the resent survey, please see some results and information below.

First of all, I wanted to say a huge thank you to all the CML patients who took the time to complete our on-line survey on generic TKIs.  We had 173 responses in total which was amazing and significantly more than we were expecting.

Our project lead Lucy Stothert (4th year pharmacy student at University of Birmingham) has done a great job of analysing all the responses and we wanted to share some of her key findings.

Details of Respondents

72% female, 28% male

Majority from UK (64%), followed by North America (27%) – 16 countries in total

Most commonly prescribed TKI was imatinib (40%) and 1-5 years was the most common duration of treatment (49%)

Patient concerns

67% of patients were concerned about switching from branded to generic TKI.  18% stated that they were very concerned and 3% stated that they wouldn’t take a generic medicine

The most common reason for having concerns was side effects (88%).  Other reasons included effectiveness of treatment (62%), not being able to switch back in event of a problem (48%) and reliability of supply (42%)

Of those patients who had switched from a branded to a generic TKI, 20% felt that branded TKIs were more effective than the generic

Patient experiences

79 patients had actually switched from branded to generic or between generics and they were asked about their experiences to date.

75% of patients were NOT told that their medicine was being switched.  66% of patients who switched from branded to generic were not informed and 96% of patients who switched between generics were not informed. Only 4% of patients were provided with written information when they switched from branded to generic TKI although 47% of patients stated that they would have liked to receive written information about the switch.

Of those patients who raised concerns about the switch, 40% felt that their concerns were handled completely seriously but 30% felt that they were not taken seriously at all.

46% of patients reported a change in side effects following a switch.  There were not enough numbers to draw conclusions about the side effect profile of specific generics but overall, patients reported that side effects were more likely to be worse with their current medications than better with their current medication.  Interestingly, patients who had switched from branded to generic tended to have worse side effects with the generic version whereas those who had switched between generics tended to have fewer side effects with their current version (perhaps because they had requested a switch from a generic that wasn’t suiting them?)

We are planning to submit a poster to the International CML Horizons conference in May and are hoping to get the project published in a journal as well so please look out for updates on our progress!

Thank you again to everyone who has supported this piece of work!

Nick Duncan

Consultant haematology pharmacist

Queen Elizabeth Hospital