CN61 - Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): Interview results

Background

Little is known about patients’ interactions with Supported Self-Management (SSM) for early breast cancer (EBC), or confidence in managing their care in this pathway. The PRAGMATIC study allowed us to explore these issues.

Methods

Three clinical teams in Surrey and Sussex identified EBC patients due to enter SSM. Patients completed standardised questionnaires (separately reported) +/- semi-structured telephone interviews at baseline, 3, 6, 9 and 12 months. The interviews explored how confident patients felt managing their care, accessing services, managing side effects (SEs), and lifestyle changes.

Results

32/110 patients engaged in interviews; data are available for 30/32 at all timepoints. Participants were representative of the whole group in terms of demographics and treatment received. Patients understood the main reasons for SSM were to: a) assume responsibility for their follow up (18/32; 56%) and b) save time and money for them and the hospital (16/32; 50%). Most maintained (very/somewhat) confidence over time in managing their care and SEs, but were less confident identifying BC related signs/symptoms especially if screen detected. 19 patients contacted the SSM helpline +/- their GP. 15/19 found the helpline easy to use and 6/19 were seen by a healthcare professional. The main triggers for calling were for advice on signs/symptoms and managing SEs. 5/26 (19%) patients on endocrine therapy (ET) had stopped it completely. Most (29/32) were engaged in exercise before diagnosis, and 8/10 who discontinued during treatment resumed afterwards. The COVID-19 pandemic had a negative impact on exercise and socialising. The interviews’ free text provided a plethora of rich data. Qualitative analysis produced four overarching themes: 1) expectations and experiences, 2) emotional wellbeing, 3) clinical concerns, and 4) effect of COVID-19 pandemic.

Conclusions

SSM works for most EBC patients. Clinicians could explain that the helpline is available for psychosocial as well as physical concerns. BC teams may want to review how to help screen detected patients recognise BC related signs/symptoms, how to monitor adherence to ET and offer interventions for treatment related SEs.

Clinical trial identification

ISRCTN10777283.

Editorial acknowledgement

Legal entity responsible for the study

University of Sussex.

Funding

Surrey & Sussex Cancer Alliance.

Disclosure

All authors have declared no conflicts of interest.