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Living Without Answers - ILLUMINATE CUP

Illuminating the Lived Experience: Listening, Understanding and Meaning-makIng - A Narrative Analysis of the Diagnosis, Treatment and Experience of Cancer of Unknown Primary

Status
Not yet recruiting
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT07712965
Acronym
ILLUMINATE CUP
Enrollment
20
Registered
2026-07-20
Start date
2026-09-01
Completion date
2028-09-01
Last updated
2026-07-20

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Cancer, Cancer Unknown Primary, CUP

Brief summary

This project aims to improve care, service delivery, and patient experience for people with Cancer of Unknown Primary (CUP) by addressing a critical gap in understanding the lived experiences of patients and carers. By exploring how individuals navigate diagnostic uncertainty, fragmented care pathways, and interactions with healthcare professionals, the study will identify key points of distress, unmet need, and communication breakdown. The findings will support the development of more person-centred and compassionate care, including clearer communication, improved service coordination, and better recognition of the psychological and emotional impact of CUP. By highlighting the challenges of uncertainty and lack of diagnostic clarity, the project will inform more tailored support for both patients and carers. A unique strength of this study is the inclusion of a professional illustrator to visually capture focus group discussions, supporting the narrative inquiry approach and aiding the interpretation of shared meanings within the data. These visual summaries will enhance engagement, inclusivity, and accessibility, ensuring that complex experiences are communicated clearly to patients, carers, clinicians, and wider audiences. Through strong PPIE involvement and accessible dissemination, patient and carer voices will directly inform service improvements and future care design. Overall, this project will help ensure CUP care is more coordinated, communicative, inclusive, and responsive to patient and carer needs, ultimately improving experience, wellbeing, and trust in healthcare services.

Interventions

None listed

Sponsors

The Clatterbridge Cancer Centre NHS Foundation Trust
Lead SponsorOTHER

Study design

Observational model
CASE_ONLY
Time perspective
PROSPECTIVE

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No

Inclusion criteria

* have a confirmed diagnosis of cancer of unknown primary, or care for someone who has a diagnosis of cancer of unknown primary * are 18 years old and above * have capacity to provide informed consent

Exclusion criteria

* do not have capacity to provide informed consent * are deemed too unwell by the clinical team to take part in the research

Design outcomes

Primary

MeasureTime frameDescription
Inform improvements to CUP pathways, information resources, and support services2 yearsNarrative and thematic findings derived from qualitative analysis of participant focus groups and semi-structured interviews, including themes relating to diagnostic uncertainty, treatment experiences, communication with healthcare professionals, psychological impact, coping, and meaning-making

Contacts

CONTACTAlison Taylor
Alisontaylor12@nhs.net0151 556 5000

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Jul 21, 2026