Living Without Answers - ILLUMINATE CUP (ILLUMINATE CUP)

July 13, 2026 updated by: The Clatterbridge Cancer Centre NHS Foundation Trust

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

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.

Study Overview

Status

Not yet recruiting

Conditions

Study Type

Observational

Enrollment (Estimated)

20

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

Participants for this study are patients with CUP and their carers

Description

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Inform improvements to CUP pathways, information resources, and support services
Time Frame: 2 years
Narrative 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
2 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

The Clatterbridge Cancer Centre NHS Foundation Trust

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Estimated)

September 1, 2026

Primary Completion (Estimated)

September 1, 2027

Study Completion (Estimated)

September 1, 2028

Study Registration Dates

First Submitted

July 8, 2026

First Submitted That Met QC Criteria

July 13, 2026

First Posted (Actual)

July 20, 2026

Study Record Updates

Last Update Posted (Actual)

July 20, 2026

Last Update Submitted That Met QC Criteria

July 13, 2026

Last Verified

July 1, 2026

More Information

Terms related to this study

Additional Relevant MeSH Terms

Other Study ID Numbers

  • C1624
  • 366250 (Other Identifier: IRAS)

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

UNDECIDED

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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