Living Without Answers - ILLUMINATE CUP

NCT07712965 | Not Yet Recruiting

• 2 other identifiers: C1624366250
• Study Type: observational
• Target: 20
• Locations: 0 countries
• Sites: N/A

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.

Conditions

Cancer; CUP; Cancer Unknown Primary

Outcome Measures

Primary Outcomes (1)

• Inform improvements to CUP pathways, information resources, and support services

  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

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Participants for this study are patients with CUP and their carers

You may qualify if:

• 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

You may not qualify if:

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

Sponsors & Collaborators

• The Clatterbridge Cancer Centre NHS Foundation Trust: lead

MeSH Terms

Conditions

Neoplasms; Neoplasms, Unknown Primary

Condition Hierarchy (Ancestors)

Neoplasm Metastasis; Neoplastic Processes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Central Study Contacts

Alison Taylor

CONTACT

0151 556 5000; Alisontaylor12@nhs.net

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 8, 2026
• First Posted: July 20, 2026
• Study Start (Estimated): September 1, 2026
• Primary Completion (Estimated): September 1, 2027
• Study Completion (Estimated): September 1, 2028
• Last Updated: July 20, 2026

Record last verified: 2026-07