Patients' views and experiences on the supported self-management/patient-initiated follow up pathway for breast cancer

Valerie Jenkins; Rachel Starkings; May Teoh; Shirley May; David Bloomfield; Charles Zammit; Debbie Elwell-Sutton; Dibendu Betal; Judith Finlay; Kay Nicholson; Manish Kothari; Regina Santos; Elaine Stewart; Stephanie Bell; Fiona McKinna; Lucy Matthews

doi:10.1007/s00520-023-08115-5

Patients' views and experiences on the supported self-management/patient-initiated follow up pathway for breast cancer

Support Care Cancer. 2023 Oct 27;31(12):658. doi: 10.1007/s00520-023-08115-5.

Authors

Affiliations

¹ Sussex Health Outcomes Research & Education in Cancer (SHORE-C), Brighton & Sussex Medical School, University of Sussex, Falmer, East Sussex, England, UK. val@sussex.ac.uk.
² Sussex Health Outcomes Research & Education in Cancer (SHORE-C), Brighton & Sussex Medical School, University of Sussex, Falmer, East Sussex, England, UK.
³ Ashford & St Peter's NHS Foundation Trust, London Road, Ashford, Surrey, England, UK.
⁴ University Hospitals Sussex NHS Foundation Trust, Brighton, East Sussex, England, UK.
⁵ University Hospitals Sussex NHS Foundation Trust, Worthing, West Sussex, England, UK.
⁶ Surrey & Sussex Cancer Alliance, Royal Surrey County Hospital NHS Foundation Trust, Guildford, Surrey, England, UK.

Abstract

Purpose: To explore patients' expectations and experience of Supportive Self-Management (SSM)/ Patient Initiated Follow Up (PIFU) following breast cancer treatments over a 12-month period.

Methods: In total, 32/110 (29%) patient participants in the PRAGMATIC (Patients' experiences of a suppoRted self-manAGeMent pAThway In breast Cancer) study were interviewed at baseline, 3, 6, 9 and 12 months. Interviews in this sub-study used a mix-methods approach to explore understanding of the pathway, confidence in self-management, triggers to seek help and/or re-engage with the clinical breast team and impact of the COVID-19 pandemic. Responses to pre-assigned categories were summarised as counts/ percentages and collated in tabular or graphic format. Free responses were recorded verbatim and reviewed using framework analysis.

Results: Participants regarded the SSM/PIFU pathway as a way to save time and money for them and the National Health Service (NHS) (14/32; 44%) and as a means of assuming responsibility for their own follow-up (18/32; 56%). Most maintained (very/somewhat) confidence in managing their BC follow-up care (baseline 31/32, 97%; 12 months 29/31, 93%). During the year, 19% (5/26) stopped endocrine therapy altogether because of side effects. Qualitative analysis revealed general satisfaction with SSM/PIFU and described the breast care nurses as reassuring and empathic. However, there was a lingering anxiety about identifying signs and symptoms correctly, particularly for those with screen-detected cancers. There was also uncertainty about who to contact for psychological support. The COVID-19 pandemic discouraged some participants from contacting the helpline as they did not want to overburden the NHS.

Conclusions: The results show that during the first year on the SSM/PIFU pathway, most patients felt confident managing their own care. Clinical teams should benefit from understanding patients' expectations and experiences and potentially modify the service for men with BC and/or those with screen-detected breast cancers.

Keywords: Breast cancer; COVID-19; Patient-initiated follow-up; Semi-structured interviews; Supported self-management.

MeSH terms

Breast Neoplasms* / therapy
COVID-19*
Follow-Up Studies
Humans
Male
Pandemics
Self-Management*
State Medicine