Quality of life of patients with cancer of known and unknown primary
Research type
Research Study
Full title
Understanding the quality of life and psychosocial needs of patients with cancer of known and unknown primary: A pre-testing and feasibility study
IRAS ID
161544
Contact name
Richard Wagland
Contact email
Research summary
Patients with cancer of unknown primary (CUP) have cancer that has spread to different parts of their body, but the main (primary) cancer site cannot be found. CUP is the fourth most common cause of cancer death, accounts for 3-5% of cancer diagnoses, and only about 20% of people diagnosed with CUP survive for one or more years. Patients with CUP experience high levels of uncertainty regarding their diagnosis, how quickly their health will decline and how long they will live. They often undergo many investigations trying to find the primary and get moved around between different teams of doctors.
These conditions create a unique set of emotional, social and quality of life (QoL) issues for CUP patients and their families, but very little research concerning these issues has previously been conducted. To develop services to better support patients with CUP we need to understand how their needs change over time, and how these compare with the experiences of patients with cancer where the primary site of cancer is known.
This study will test whether it is possible to compare the QoL and treatment experiences of patients with CUP and thoose with cancer of known primary. Patients will be first approached by clinicians and, if they agree to take part in the study, will complete a questionnaire at three time-points, three months apart, over a six month period. Once patients have completed the final questionnaire they will take part in a short interview (30minutes) to find out how easy or difficult it was to complete the questionnaires, how long it took and whether any other parts of the study could be improved. The findngs from this study will help develop a larger study that will include a much larger number of patients from more hospital trusts.
REC name
South Central - Hampshire B Research Ethics Committee
REC reference
15/SC/0415
Date of REC Opinion
2 Oct 2015
REC opinion
Further Information Favourable Opinion