Needs for information and reasons for (non)adherence in chronic myeloid leukaemia: Be aware of social activities disturbing daily routines

Abstract

Objectives: To obtain insight into patients' reasons for medication (non)adherence in chronic myeloid leukaemia (CML) and needs and wishes regarding information and communication.

Methods: A mixed-method study on the basis of a questionnaire and semi-structured interviews. The CML patient advocacy group asked patients to participate.

Results: Sixty-one patients (54 ± 12 years, 43% male) using imatinib, dasatinib or nilotinib participated. Fifteen patients (25%) reported to miss an intake at least once a month. Most were not worried about missing an intake and did not discuss missed intakes with their healthcare provider (HCP). Social activities disturbing daily routines and the wish to avoid side effects resulted in nonadherence. Patients wanted extensive and understandable information provided timely on all aspects of CML treatment, in particular on side effects, and a more supportive HCP attitude.

Conclusions: Nonadherence to CML medication does not cause concern in all patients and is not discussed pro-actively. HCP have a clear role in supporting medication adherence in CML and must be aware that social activities disturbing daily routines contribute to nonadherence. HCP should discuss (non)adherence in a direct manner, motivate patients to play an active role in managing their medication and timely provide extensive and understandable information on all aspects of CML.

Keywords: chronic myeloid leukaemia; medication adherence; medication information; patients’ experiences; qualitative research; tyrosine kinase inhibitors.