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Research project: Understanding the unknown: a case study approach to explore patients, carers and health care professionals; experiences of cancer of unknown primary site - Dormant - Dormant

Currently Active: 
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In the UK, in 2 to 6 per cent of invasive cancers, no primary site from where the cancer originated can be found. Investigations will have found a secondary cancer but will not have been able to identify a primary cancer. To reach a diagnosis of CUP, patients will often have had a series of investigations to eliminate possible primaries. They and their families are therefore living with great uncertainty. The diagnosis can be both distressing and difficult to accept.

In addition, it has a particularly poor prognosis, with less than one in ten patients diagnosed with CUP surviving for five years or more. Very little is known about the experience of living with CUP. The limited research suggests that CUP patients experience a range of difficulties, including problems in accessing information about their diagnosis and in obtaining adequate support from health professionals. Little is also known about the experiences of family carers and health care professionals involved in the care of CUP patients.

This study therefore uses a case study approach to explore patients’, carers’ and health care professionals’ experiences of CUP. Up to 25 patients with CUP will be interviewed and invited to nominate two health professionals and one lay person who they feel has been most involved or affected by their illness, who will also be interviewed. The findings from these interviews will shape the second stage of the study: focus groups with patients, family members and health care professionals which will inform practical recommendations about how to improve the support of CUP patients.

This study aims to explore patients’, families and health care professionals’ experiences of cancer of unknown primary site, in order to inform the development of evidence-based and patient-centred clinical care. Its objectives are 1) to explore the key issues and experiences of patients and their family living with a diagnosis of CUP, and the key issues and experiences of patients and their family living with a diagnosis of metastatic disease where no primary has been identified 2) to explore the key issues and experiences of caring for CUP patients and for those with metastatic cancer where no primary has been identified from the perspective of health care professionals, and 3) to work with CUP patients, their family, and health care professionals from hospital and the community to inform best practice and develop practical recommendations about ways of improving the care and support offered to those living with or affected by CUP. In Phase 1 case studies of up to 25 people with CUP will be compiled. These will address objectives 1 and 2.

Each case will include in-depth interviews with the index patient, who will be invited to name two health care professionals (e.g. a nurse, doctor or a paid carer) and one lay person who they feel has been most involved or affected by their illness, who will then also be invited to take part in a research interview. Interviews will be audio-taped, fully transcribed and analysed using the constant comparative approach. Cases will be purposively constructed to capture both the key issues and experiences of patients and their family living with a diagnosis of CUP and the key issues and experiences of patients and their family living with a diagnosis of metastatic disease where no primary has been identified.

Phase 2 aims to consider the findings from Phase I of the study to make practical recommendations about ways of improving the care and support offered to those living with or affected by CUP. This will address objective 3 of the study. Focus groups using modified nominal group techniques will be conducted with patients, their family members and health care professionals to consider the findings from the case studies and to make practical recommendations about ways of improving the care and support offered to those living with or affected by CUP.

Project team

Richardson A, Addington-Hall J , Hopkinson J , Foster C, Foster R

Dr Carol Davis, (Southampton University Hospital Trust)
Dr Lucy Boyland, (Oakhaven Hospice Trust)
Dr John Symons, (Cancer of Unknown Primary Foundation - Jo's friends)

Project funder

Dimbleby Cancer Care

CancerHelp UK summary

Associated research themes

Palliative Care
Cancer of Unknown Primary
Understanding experiences and concerns
Carers

Related research groups

Complex Healthcare Processes

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