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


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Session type:

Valerie Jenkins1, May Teoh2, Lucy Matthews2, Shirley May2, Manish Kothari2, David Bloomfield2, Fiona McKinna2, Charles Zammit2, Debbie Elwood-Sutton2, Stephanie Bell2, Heather Gage2, Regina Santos2, Elaine Stewart2, Dibendu Betal2, Kay Nicholson2, Judith Finlay2
1University of Sussex, 2Other

Abstract

Background

Little is known about patients’ interactions with the Supported Self-Management (SSM) system for early breast cancer (EBC), or confidence in recognising and reporting BC related symptoms.  The PRAGMATIC study allowed us to explore these issues.

Method

The clinical team at three hospitals in Surrey and Sussex identified eligible patients about to enter the SSM pathway. Participants completed standardized questionnaires (reported elsewhere) plus or minus structured telephone interviews at baseline, 3, 6, 9 and 12 months.

Results

Baseline (n=32/110) and 3-month (n=31/106) interview data are presented; participants were representative of the group – 65.7% v 64.5% were 50-70 years old, and 10/32 (31%) v 35/110 (32%) received chemotherapy.

Participants understood the main reasons for the pathway were to: - a) assume responsibility for their own follow up (18/32; 56%) and b) save time & money for them and the hospital (16/32; 50%).  21/32 (66%) received written information about the SSM programme. 14/21 (67%) read at least part and 11/14 (79%) found it useful.  

At baseline the majority had no concerns about the pathway (27/32; 84%) and were very/somewhat confident about reporting BC related signs and symptoms (27/32; 84%), and dealing with side effects from treatments (29/32; 91%).  By 3 months 13/31 (42%) participants had made 15 calls to the SSM telephone helpline; all found it simple to use, with the nurses returning 9/15 (60%) calls within 24 hours. The main reason for calling was concern over BC signs and symptoms 8/15 (53%).

Making lifestyle changes (exercise/diet) following diagnosis and hospital treatment was a popular choice (16/32; 50%). However at 3months the COVID-19 pandemic had a negative impact on these changes for 8/16 (50%) participants.

Conclusion

Initial findings show that patients feel confident about managing their own breast cancer care, and those who used the SSM service found it simple and responsive to their needs.

Impact statement

 PRAGMATIC is gathering evidence on how well SSM meets the needs of women, and how NHS resource use is affected, to inform future service delivery.