Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): 3 month quality of life results


Session type:

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



A major priority of the National Cancer plan is the implementation of personalised stratified follow up and Supported Self-management (SSM) in early breast cancer (EBC).  However, there is a lack of published data on patients’ experiences in these pathways.  PRAGMATIC aims to evaluate the experiences of EBC patients entering SSM and the impact on quality of life (QoL) and NHS service use.


The clinical team at three hospitals in Surrey and Sussex identified eligible patients about to enter the SSM pathway. Participants completed questionnaires to assess QoL (FACT B), self-efficacy (GES), psychological morbidity (GHQ-12) and roles and responsibilities (PRRS). A separate service use form captured NHS costs. Assessments were conducted at baseline, 3, 6, 9 and 12 months.


Between February and November 2020, 110 patients were recruited to PRAGMATIC, and 106 completed 3 month assessments. Type of breast surgery included Wide Local Excision (85; 77%) Mastectomy (M) (23; 21%), M & immediate reconstruction (10; 9%).  35/110 (32%) patients received chemotherapy.

At baseline and 3 months, mean total QoL scores were lower (i.e. poorer) in those who received chemotherapy (92.9 v 113.8; 94.7 v 112.3 p<0.001). Also psychological morbidity was more prevalent in this group (baseline 51% v 33%; p= 0.055; 3months 47% v 28% p = 0.053) and they experienced greater difficulty fulfilling their roles and responsibilities (mean PRRS scores 43.8 v 52.9 at baseline; 44.4 v 52.3 at 3 months p<0.001).  

At 3 months overall QoL remained the same for 58/106 (52.7%), declined in 27 (24.5%) and improved for 21 (19.1%). Service use showed that by 3 months, 53/106 (50%) had telephoned a specialist breast nurse for advice, 24 of whom had high levels of psychological morbidity; 29/53 (55%) went on to have a clinic visit.


Initial findings show that patients who have chemotherapy for breast cancer may require more psychological support as they start the SSM pathway. However, having had chemotherapy did not result in an increase in contact with the SSM helpline.

Impact statement

These findings provide valuable insight and build on the limited existing evidence on EBC patients' experiences in SSM pathways.