Updated qualitative review will map women’s breast cancer experiences from diagnosis to survivorship
Breast cancer care has been measured for decades in survival curves, stage distributions, and treatment response rates. This protocol turns attention to a different clinical evidence stream: how women experience the disease across the care continuum, including diagnosis, treatment, survivorship, and the process of moving through health systems that are often fragmented or resource-constrained.
The planned systematic review in BMJ Open will synthesize qualitative research published from 1 February 2018 through 31 January 2026, building on a prior 2019 meta-synthesis. The rationale is straightforward. Epidemiology has advanced faster than the qualitative understanding of what patients endure, especially in settings where access barriers, late presentation, and limited support services can shape care from the first consultation through long-term follow-up.
This is not a treatment trial and it does not test a drug or device. It is a protocol for an evidence synthesis designed to capture first-person accounts and organize them into clinically useful themes for practice and policy.
Why a new synthesis is needed now
Women with breast cancer rarely move through care in a straight line. Diagnostic delays, distress at disclosure, changing family roles, treatment toxicity, fear of recurrence, and uneven access to supportive services can accumulate across the illness trajectory. Qualitative studies are often the only way to describe these burdens with precision, yet they are dispersed across journals, regions, and health systems.
A 2019 meta-synthesis helped consolidate that literature, but the qualitative field has grown substantially since then. New studies now offer additional perspectives from diverse global contexts, and the protocol is intended to capture that newer evidence rather than rely on an older body of work that may no longer reflect current care realities.
One sentence captures the clinical gap: survival is not the same thing as recovery experience.
The review is designed to include women assigned female sex at birth, aged 18 years and older, who have been diagnosed with breast cancer and have provided first-person accounts in peer-reviewed qualitative studies. By focusing on lived experience, the project aims to inform patient-centred oncology care in a way that quantitative endpoints alone cannot.
How the review will identify and judge the evidence
The planned synthesis follows Joanna Briggs Institute meta-aggregation methodology, a framework suited to bringing together qualitative findings without erasing the context in which they were generated. The review question is structured with the Population, Phenomenon of Interest and Context approach, while the eligibility criteria have been adapted to fit the qualitative design.
Investigators will search PubMed, Scopus, Web of Science, and EBSCOhost/CINAHL. That database range is important because relevant qualitative studies may appear in oncology journals, nursing literature, public health outlets, and multidisciplinary sources rather than in a single specialty archive.
Screening, data extraction, and methodological appraisal will be performed independently by multiple reviewers. The protocol specifies the JBI Critical Appraisal Checklist for qualitative research to assess study quality. Findings will then be synthesized using the JBI meta-aggregation approach, and confidence in the synthesized evidence will be judged with ConQual.
The design is deliberately conservative. By separating appraisal from synthesis and using structured confidence assessment, the review tries to minimize the risk that isolated findings are overinterpreted or that weak studies distort the final picture.
What clinicians may learn from patient narratives
The value of a review like this lies in its ability to connect clinic-side assumptions with patient-side reality. In breast oncology, clinicians may focus on pathology, receptor status, surgical planning, chemotherapy schedules, endocrine therapy, radiation, and surveillance. Women often experience the same journey as uncertainty, fear, identity change, pain, financial strain, information overload, and difficulty navigating services that do not communicate well with one another.
Those experiences matter because they can affect adherence, follow-up, trust, and willingness to seek care early when symptoms arise again. For patients in low-resource settings, the stakes can be even higher if transportation, cost, stigma, or limited specialist access complicate each stage of care.
The protocol does not claim in advance that the review will identify one dominant theme or one universal experience. Breast cancer care is shaped by culture, health system design, age, social support, and treatment intensity. A synthesis that respects those differences may be more useful than one that tries to flatten them into a single narrative.
Resource-constrained settings remain central to the question
The protocol explicitly notes the need to understand experience in resource-constrained settings, where care pathways can be longer, less coordinated, and more difficult to navigate. In such settings, a diagnosis may carry not only the medical burden of cancer but also the practical burden of repeated travel, delayed appointments, and inconsistent access to information or psychosocial support.
Because the review will include global literature, it may help separate universal elements of the breast cancer experience from those driven by health system limitations. That distinction could matter for service redesign, patient education, navigation support, and survivor follow-up programs.
A review of this kind can also expose gaps in the evidence base itself. If certain regions, language groups, age bands, or treatment phases are underrepresented, the final synthesis will show where the literature is thin rather than pretending the patient experience is fully mapped.
Protocol registration and planned dissemination
The protocol is registered on the Open Science Framework under DOI 10.17605/OSF.IO/WGZCK. It requires no ethical approval because it relies exclusively on published literature.
The findings will be disseminated through peer-reviewed publication, conference presentations, and stakeholder engagement. The intended audience extends beyond academic readers to the clinicians, researchers, and health systems leaders responsible for breast cancer care delivery.
The most practical outcome of the review may be simple: a more disciplined account of what women report while moving through breast cancer care, and where current services still fail to meet their needs. If the synthesis is strong, it will not just describe experience; it will identify where oncology systems need to listen more carefully and act more precisely.