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

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

Valerie Jenkins  1 , Rachel Starkings  2 , May Teoh  3 , Shirley May  2 , David Bloomfield  4 , Charles Zammit  4 , Debbie Elwell-Sutton  4 , Dibendu Betal  5 , Judith Finlay  5 , Kay Nicholson  5 , Manish Kothari  3 , Regina Santos  3 , Elaine Stewart  3 , Stephanie Bell  6 , Fiona McKinna  6 , Lucy Matthews  2
Affiliations

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

Valerie Jenkins et al. Support Care Cancer. .

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.

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Conflict of interest statement

Author VJ was awarded grant funding from SSCA to conduct the study. Author MT is the Co Clinical Lead for Personalised Care and Support at SSCA; Authors DB and CZ are joint Chairs of the Breast High Priority Pathway Group at the SSCA; Author FM was the Medical Director for the SSCA, and author SB is employed by the SSCA. All other authors have no relevant financial or non-financial interests to disclose.

Figures

Fig. 1
Fig. 1
Who participants would seek help from a baseline and 12 months
See this image and copyright information in PMC

References

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    1. NHS England: personalised care and improving quality of life outcomes (https://www.england.nhs.uk/cancer/living/#follow-up-care) accessed March 12th 2023
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