{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,26]],"date-time":"2026-03-26T17:01:29Z","timestamp":1774544489455,"version":"3.50.1"},"reference-count":24,"publisher":"Springer Science and Business Media LLC","issue":"11","license":[{"start":{"date-parts":[[2023,10,27]],"date-time":"2023-10-27T00:00:00Z","timestamp":1698364800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,10,27]],"date-time":"2023-10-27T00:00:00Z","timestamp":1698364800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Support Care Cancer"],"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Purpose<\/jats:title>\n                <jats:p>To explore patients\u2019 expectations and experience of Supportive Self-Management (SSM)\/ Patient Initiated Follow Up (PIFU) following breast cancer treatments over a 12-month period.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>In total, 32\/110 (29%) patient participants in the PRAGMATIC (Patients\u2019 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>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\u2019 expectations and experiences and potentially modify the service for men with BC and\/or those with screen-detected breast cancers.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s00520-023-08115-5","type":"journal-article","created":{"date-parts":[[2023,10,27]],"date-time":"2023-10-27T05:01:21Z","timestamp":1698382881000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Patients\u2019 views and experiences on the supported self-management\/patient-initiated follow up pathway for breast cancer"],"prefix":"10.1007","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8939-0081","authenticated-orcid":false,"given":"Valerie","family":"Jenkins","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Starkings","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"May","family":"Teoh","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shirley","family":"May","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Bloomfield","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charles","family":"Zammit","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Debbie","family":"Elwell-Sutton","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dibendu","family":"Betal","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Judith","family":"Finlay","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kay","family":"Nicholson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Manish","family":"Kothari","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Regina","family":"Santos","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elaine","family":"Stewart","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephanie","family":"Bell","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fiona","family":"McKinna","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lucy","family":"Matthews","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2023,10,27]]},"reference":[{"key":"8115_CR1","unstructured":"International Agency for Research on Cancer. 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Approval was granted by the Health Research Authority Ethics Approval (London-Chelsea REC; 19\/LO\/1966).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"Signed informed consent was obtained from all individual participants in the study, either by paper or electronically.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"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.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}}],"article-number":"658"}}