Equity in re-access to specialist care and support in breast cancer pathways in England: a realist-informed qualitative study

Equity in re-access to specialist care and support in breast cancer pathways in England: a realist-informed qualitative study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Equity in re-access to specialist care and support in breast cancer pathways in England: a realist-informed qualitative study Patrick Kierkegaard, Bowen Su, Hilary Stobart, Lesley Stephen, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9162255/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 5 You are reading this latest preprint version Abstract Background Patient-initiated follow-up within personalised stratified follow-up replaces some routine appointments with supported self-management and a route back to specialist care or relevant support when concerns arise. It may become inequitable when re-access depends on unclear contact routes, repeated triage, and delayed responses. We examined how people got back into care or support in breast cancer pathways in England and derived a candidate assisted-access specification for fairer re-access. Methods We conducted two rounds of online focus groups with people with lived experience of breast cancer and family carers (n = 16). Using a realist-informed qualitative design and documentary analysis, we analysed re-access episodes from first concern to the reported outcome of that help-seeking attempt. We then analysed how pathway arrangements interacted with participants’ resources to shape what happened next. Results Participants described re-access not as a single act of “getting back in touch” but as repeated work: interpreting information, finding a route, waiting, chasing, and deciding whether it was safe to persist. Re-access was made harder by friction and depletion. Patients and carers were often left to monitor progress, chase responses, and coordinate the next step. Capacity to persist was uneven, and whether concerns were voiced depended partly on interactional safety. Opaque routing, voicemail loops, untracked requests, and inaccessible communication shifted learning, compliance, logistical, and psychological costs onto patients and family supporters. Timely reconnection often depended on time, confidence, language, money, or informal support. From participants’ accounts, stress-tested in round two and then cross-checked against current policy and pathway guidance, we derived a candidate assisted-access specification centred on a multi-channel front door, named triage ownership, tracking to closure, a second-look route, recognition of family supporters, and assisted navigation and outreach. Conclusions Fair re-access depended not only on clinical need but on whether services provided workable route-back infrastructure for people who were unwell, fatigued, or managing unequal resources. Patient-initiated models may widen inequalities when administrative and safety work are shifted onto patients without compensatory design. The candidate assisted-access specification offers a bounded basis for local adaptation and prospective evaluation rather than a validated universal standard. Breast cancer survivorship health equity patient‑initiated follow‑up administrative burden navigation access to care NHS qualitative research Full Text Additional Declarations Competing interest reported. SN is funded through CEC’s NIHR Research Professorship and Breast Cancer Now. HS reports membership of the Breast Cancer Now Tissue Bank Advisory Board and voluntary trustee membership of the Independent Cancer Patients’ Voice charity; an honorarium from the Lancet Commission funded by Breast Cancer Now and the University of Cambridge; an honorarium from CRUK Precision Grand Challenge; and support for travel expenses from Breast Cancer Now, CRUK, the Association of Breast Surgeons UK, and Breast International Group. LS reports support for travel expenses from Breast Cancer Now. CEC reports grants from Breast Cancer Now, Cancer Research UK (CRUK), Addenbrooke’s Charitable Trust, and the National Institute for Health and Care Research (NIHR); participation in the PROTIS phase III sinonasal proton versus IMRT trial (member) and the TORPEdO Proton Beam Therapy trial (member); and a leadership role for the Lancet Breast Cancer Commission (chair). All other authors declare no competing interests Supplementary Files GRIPP2shortformversionCASCARA.docx SRQRChecklistCASCARA.docx SupplementaryMaterialstables.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviewers agreed at journal 13 Apr, 2026 Reviewers invited by journal 13 Apr, 2026 Editor assigned by journal 21 Mar, 2026 Submission checks completed at journal 21 Mar, 2026 First submitted to journal 18 Mar, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9162255","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":622598618,"identity":"fff1ac6d-c640-41a7-98c4-663aad3c2cc8","order_by":0,"name":"Patrick Kierkegaard","email":"data:image/png;base64,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","orcid":"","institution":"Cancer Research UK Convergence Science Centre","correspondingAuthor":true,"prefix":"","firstName":"Patrick","middleName":"","lastName":"Kierkegaard","suffix":""},{"id":622598619,"identity":"7aac085c-70ce-41fe-b0d1-363951862c0e","order_by":1,"name":"Bowen Su","email":"","orcid":"","institution":"Cancer Research UK Convergence Science Centre","correspondingAuthor":false,"prefix":"","firstName":"Bowen","middleName":"","lastName":"Su","suffix":""},{"id":622598620,"identity":"114e6366-2b5b-4276-953e-103c6bb980d8","order_by":2,"name":"Hilary Stobart","email":"","orcid":"","institution":"Independent Cancer Patients' Voice","correspondingAuthor":false,"prefix":"","firstName":"Hilary","middleName":"","lastName":"Stobart","suffix":""},{"id":622598621,"identity":"33377e26-7255-4aff-8294-cf6cb97cf19a","order_by":3,"name":"Lesley Stephen","email":"","orcid":"","institution":"Make 2nds Count","correspondingAuthor":false,"prefix":"","firstName":"Lesley","middleName":"","lastName":"Stephen","suffix":""},{"id":622598622,"identity":"538ff194-d274-422a-b210-27ab38114dac","order_by":4,"name":"Szeyi Ng","email":"","orcid":"","institution":"Institute of Cancer Research","correspondingAuthor":false,"prefix":"","firstName":"Szeyi","middleName":"","lastName":"Ng","suffix":""},{"id":622598623,"identity":"f524916e-bcb5-4889-8717-bf45337ed7d0","order_by":5,"name":"Lucy Kilburn","email":"","orcid":"","institution":"Institute of Cancer Research","correspondingAuthor":false,"prefix":"","firstName":"Lucy","middleName":"","lastName":"Kilburn","suffix":""},{"id":622598624,"identity":"6f9c894e-d4c3-453b-8705-ddf577c01e8e","order_by":6,"name":"Charlotte E. 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SN is funded through CEC’s NIHR Research Professorship and Breast Cancer Now. HS reports membership of the Breast Cancer Now Tissue Bank Advisory Board and voluntary trustee membership of the Independent Cancer Patients’ Voice charity; an honorarium from the Lancet Commission funded by Breast Cancer Now and the University of Cambridge; an honorarium from CRUK Precision Grand Challenge; and support for travel expenses from Breast Cancer Now, CRUK, the Association of Breast Surgeons UK, and Breast International Group. LS reports support for travel expenses from Breast Cancer Now. CEC reports grants from Breast Cancer Now, Cancer Research UK (CRUK), Addenbrooke’s Charitable Trust, and the National Institute for Health and Care Research (NIHR); participation in the PROTIS phase III sinonasal proton versus IMRT trial (member) and the TORPEdO Proton Beam Therapy trial (member); and a leadership role for the Lancet Breast Cancer Commission (chair). 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It may become inequitable when re-access depends on unclear contact routes, repeated triage, and delayed responses. We examined how people got back into care or support in breast cancer pathways in England and derived a candidate assisted-access specification for fairer re-access.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eWe conducted two rounds of online focus groups with people with lived experience of breast cancer and family carers (n\u0026thinsp;=\u0026thinsp;16). Using a realist-informed qualitative design and documentary analysis, we analysed re-access episodes from first concern to the reported outcome of that help-seeking attempt. We then analysed how pathway arrangements interacted with participants\u0026rsquo; resources to shape what happened next.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eParticipants described re-access not as a single act of \u0026ldquo;getting back in touch\u0026rdquo; but as repeated work: interpreting information, finding a route, waiting, chasing, and deciding whether it was safe to persist. Re-access was made harder by friction and depletion. Patients and carers were often left to monitor progress, chase responses, and coordinate the next step. Capacity to persist was uneven, and whether concerns were voiced depended partly on interactional safety. Opaque routing, voicemail loops, untracked requests, and inaccessible communication shifted learning, compliance, logistical, and psychological costs onto patients and family supporters. Timely reconnection often depended on time, confidence, language, money, or informal support. From participants\u0026rsquo; accounts, stress-tested in round two and then cross-checked against current policy and pathway guidance, we derived a candidate assisted-access specification centred on a multi-channel front door, named triage ownership, tracking to closure, a second-look route, recognition of family supporters, and assisted navigation and outreach.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eFair re-access depended not only on clinical need but on whether services provided workable route-back infrastructure for people who were unwell, fatigued, or managing unequal resources. Patient-initiated models may widen inequalities when administrative and safety work are shifted onto patients without compensatory design. The candidate assisted-access specification offers a bounded basis for local adaptation and prospective evaluation rather than a validated universal standard.\u003c/p\u003e","manuscriptTitle":"Equity in re-access to specialist care and support in breast cancer pathways in England: a realist-informed qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-20 18:12:12","doi":"10.21203/rs.3.rs-9162255/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewerAgreed","content":"22599039825508576547941013747388932765","date":"2026-04-13T23:29:54+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-13T08:28:33+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-21T12:28:27+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-21T12:27:31+00:00","index":"","fulltext":""},{"type":"submitted","content":"International Journal for Equity in Health","date":"2026-03-18T18:11:28+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"international-journal-for-equity-in-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ijeh","sideBox":"Learn more about [International Journal for Equity in Health](http://equityhealthj.biomedcentral.com)","snPcode":"12939","submissionUrl":"https://submission.nature.com/new-submission/12939/3","title":"International Journal for Equity in Health","twitterHandle":"@equityhealthj","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"ca40dea1-fe9a-4205-9b3f-2b898cb8962c","owner":[],"postedDate":"April 20th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-20T18:12:13+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-20 18:12:12","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9162255","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9162255","identity":"rs-9162255","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}