Background and aims
Patients with short bowel syndrome and type 3 intestinal failure (SBS-IF) are dependent on parenteral nutrition (PN), a lifesaving treatment but inconvenient and with risks. Glucagon-like peptide 2 analogue (teduglutide) can reduce patients’ need for PN. However, it comes with the risk of a number of side effects. This qualitative study investigated patients’ decision making process to start teduglutide and how family members contributed to the decision.
In-depth semi-structured interviews were conducted with nine participants, six patients with SBS-IF and three family members about the decision to take teduglutide. Interviews were transcribed verbatim and analysed using framework analysis.
The prominent motivation for taking teduglutide (Revestive® Takeda Pharmaceuticals Limited) was reducing or stopping PN. Other motivations were to help others by assisting in developing the knowledge base around teduglutide, patients felt that they had nothing to lose by trying the drug and the support of relatives. The reasons patients considered not taking the drug were that they had accepted being on PN, the potential side effects of teduglutide and undergoing extra monitoring. However, the monitoring programme also acted as a motivator providing reassurance that patients would be observed and supported with side effects. Family members were happy to support patients’ decision to try teduglutide, although they had more reservations, indicating a higher risk threshold.
Patients considered potential benefits of teduglutide outweighed any disadvantages. Relatives, although supportive, had more reservations.