JMIR Publications

ABSTRACT

Background:

~80% of breast cancers are oestrogen receptor positive, and after the initial treatment of the tumour, patients are prescribed hormone therapy drugs (tamoxifen, letrozole, anastrozole, and exemestane) for 5 to 10 years. These drugs are known to cause several side effects. Additionally, studies have identified that changing medication brands (generics) can have a negative impact on patients’ side effects, attitudes and acceptance of hormone therapy. However, no effective intervention exists to address patients’ concerns with generic switching.

Objective:

To co-produce with breast cancer patients and pharmacists a symptom diary as part of a complex intervention to improve medication brand change consultations in community pharmacies that could improve adherence and quality of life.

Methods:

This article presents the studies conducted in the planning and development stages of the symptom diary following the Person Based Approach. Planning stage: analysis of an online patient forum (n=277), interviews with patients (n=9) and pharmacists (n=7). Data triangulation was used to present an integrated set of findings organised into barriers and facilitators of medication brand changes and determinants of behaviours. Development stage: a scoping review on the use of diaries in cancer patients, co-production workshops with patients and pharmacists (n=17), pharmacist interviews (n=11), and consultation with our Patient Advisory Group (n=5). Analysis was informed by evidence synthesis, behavioural theory and behaviour change analyses, and iterative stakeholder consultations.

Results:

Intervention planning: patients and pharmacists perceived community pharmacies as the ideal setting for hormone therapy medication consultations. Both proposed using a patient diary to support drug-symptoms awareness and attribution. Pharmacists referred to patients’ request for specific brands as challenging and difficult to manage; patients reported switching brands as anxiety-inducing and undermining confidence in medication taking. Intervention development: scoping review (n=29 papers) identified barriers and facilitators of diary use, and workshops discussed diary format and content (symptoms to record and plans for the medication consultation). The latter informed the intervention planning table and the first prototype of the diary. The pharmacists’ interviews highlighted the role of the diary for consultations, and patients’ feedback raised privacy issues, checked for data collected and lay comprehension. Incorporated feedback resulted in two further prototypes to ensure diary engagement and potential impact for behaviour change. The symptom diary is a self-monitoring tool to enhance self-efficacy in hormone therapy medication-taking behaviours. It comprises patients recording side effects from different brands alongside physical, psychological and environmental factors; actions taken to control symptoms; problem-solving and plans before a medication consultation to facilitated a personalised pharmacist feedback.

Conclusions:

We have co-developed an evidence, person and theory-based symptom diary for breast cancer patients with concerns about hormone therapy medication brand changes, strengthened by a diverse group of patients and pharmacists to foster meaningful patient engagement and support from professionals.