Nausea, Taste, and Schedule Highlighted as Challenges in Survivor Focus Group on Medications
Children’s Cancer Cause recently collaborated with Pfizer, Inc. on a focus group around how to make better medicines to treat children and young adults. We are so grateful to the childhood cancer survivors who joined us for this discussion to share their experiences, and we’d like to share a few illuminating highlights with you.
The purpose of the focus group was to yield insights into how pediatric oncology medications are given and how patients experience the different ways they are formulated, with a focus on the outpatient experience. The survivors who participated are graduating high school seniors or college undergrads who were recounting their experiences from treatment in childhood or younger teen years. Participants discussed their experiences with different types of formulations such as pills, liquids, or injections, sharing their preferences and the particular challenges they encountered.
“We are so grateful for these survivors who were willing to share such personal information about their cancer experience,” said moderator Beth Silber, a Children’s Cancer Cause board member and parent of a childhood cancer survivor. “Including the patient voice as part of the drug development process is critical to improving treatments. We thank them for their courage in sharing so openly in the hopes it will help others as they manage their disease.”
Here’s some of what we heard:
Weakness and nausea were repeatedly cited as significant side effects, with one survivor sharing that chemo impacted his ability to maintain weight and get needed nutrients.
The “really disgusting” taste of liquid medications was a problem for some of the survivors, who recounted that they learned how to swallow pills more quickly in order to avoid liquid medication whenever possible. Powder medications can be challenging because the patient has to take them with a lot of liquid, which can be hard to keep down.
Survivors agreed that smaller pills are better than the very large pills, even if it means taking more of them. One survivor shared that he could put very small pills in pudding or yogurt, which was “the easiest way.” Another mentioned that he needed to cut pills in half or use a pill crusher.
The type and shape of pills can matter, too. One survivor mentioned that hard edges are much more challenging to swallow than pills with smooth or round edges. Another survivor emphasized that coated pills are much easier to take and that – while he would never skip chemotherapy or antibiotics – he would skip anti-nausea and anti-pain medications if the pills were not coated.
Survivors recounted that the complex schedules for taking medications were challenging to manage. One survivor recalls taking pills from the start of the day until the end, sometimes as many as 28 pills in a day. Another survivor mentioned having to wake up especially early in order to take medication before food, while another said she was supposed to take anti-nausea medication in the middle of the night and she’d be sick all the next day if she slept through the overnight dose. Participants agreed that a phone tool or app that provides digital medication reminders personalized to the patient would be incredibly valuable.
Survivors proposed packaging suggestions, some of which could help with the scheduling challenges. One survivor suggested that pharmaceutical companies consider packaging similar to birth control, where every pill has its own place in the packet marked by the date. We heard back from focus group participants after the event, who shared that it was an empowering experience to know that professional staff and pharmaceutical company representatives were listening closely to these kinds of innovative ideas and putting high value into the deeply personal experiences shared during the session.
“I feel like I have a responsibility to do whatever I can to help future patients,” said one survivor.