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

Sep 24, 2026

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Purpose explores patients’ expectations and experience of Supportive Self-Management (SSM)/Patient Initiated Follow Up (PIFU) after breast cancer treatments over 12 months. Methods analyze 32/110 participants from the PRAGMATIC study interviewed at baseline and 3, 6, 9, and 12 months using mixed methods; category responses are tabulated while free-text responses are framework analyzed. Results show perceived time/money savings and ownership of follow-up, high confidence in managing care, and satisfaction with reassuring breast care nurses, alongside lingering anxiety about symptom recognition and uncertainty about psychological support contacts, with COVID-19 reducing helpline use.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages10

Reading Time25 min

AccessFree to download

Abstract

Purpose

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Introduction

Supportive Care in Cancer (2023) 31:658 [https://doi.org/10.1007/s00520-023-081](https://doi.org/10.1007/s00520-023-081)15-5 Patients’ views and experiences on the supported self‑management/ patient‑initiated follow up pathway for breast cancer Valerie Jenkins1 · Rachel Starkings1 · May Teoh2 · Shirley May1 · David Bloomfield3 · Charles Zammit3 · Debbie Elwell‑Sutton3 · Dibendu Betal4 · Judith Finlay4 · Kay Nicholson4 · Manish Kothari2 · Regina Santos2 · Elaine Stewart2 · Stephanie Bell5 · Fiona McKinna5 · Lucy Matthews1 Received: 13 March 2023 / Accepted: 11 October 2023 / Published online: 27 October 2023 © The Author(s) 2023 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 · Supported self-management · Patient-initiated follow-up · Semi-structured interviews Introduction In 2020, breast cancer (BC) was the most commonly diagnosed cancer type in the world with over 2.26 million new cases [1] . Improved BC treatments and early * Valerie Jenkins [val@sussex.ac.uk](val@sussex.ac.uk) 1 Sussex Health Outcomes Research & Education in Cancer (SHORE-C), Brighton & Sussex Medical School, University of Sussex, Falmer, East Sussex, England, UK 2 Ashford & St Peter’s NHS Foundation Trust, London Road, Ashford, Surrey, England, UK diagnosis have helped survival rates in the UK double from 40 to 78% resulting in a greater number of patients living longer [2] . While excellent news, regular clinical follow-up for those who have completed their hospital-based BC treatments has increased the pressure on 3 University Hospitals Sussex NHS Foundation Trust, Brighton, East Sussex, England, UK 4 University Hospitals Sussex NHS Foundation Trust, Worthing, West Sussex, England, UK 5 Surrey & Sussex Cancer Alliance, Royal Surrey County Hospital NHS Foundation Trust, Guildford, Surrey, England, UK capacity and resources within the UK National Health Service (NHS) . More sustainable models of follow-u

FAQs

What was the purpose of this study on SSM/PIFU after breast cancer treatment?

The study explored patients’ expectations and experiences with Supportive Self-Management (SSM)/Patient Initiated Follow Up (PIFU) over a 12-month period.

How were participants recruited and what was the interview schedule?

32 of 110 patient participants in the PRAGMATIC study were interviewed at baseline and at 3, 6, 9, and 12 months using a mixed-methods approach.

What were the main findings regarding patient confidence and satisfaction?

Most participants maintained (very/somewhat) confidence in managing breast cancer follow-up care and generally expressed satisfaction with SSM/PIFU, describing breast care nurses as reassuring and empathic.

Sep 24, 2026

Uploaded by McGucket