Clinical trial · Observational
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
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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
Conditions (3)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Cancer | Malignant Neoplasm | ALIAS | 0.90 |
| Cancer Unknown Primary | — | UNRESOLVED | — |
| CUP | Malignant Neoplasm of Unknown Primary | ALIAS | 0.90 |
Interventions
Interventions (0)
Data not yet available
Design
Arms and outcomes
Arms (0)
[]Primary outcomes (1)
- measure
- Inform improvements to CUP pathways, information resources, and support services
- timeFrame
- 2 years
- description
- 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
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
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
References
Publications (0)
Data not yet available