Theme 1 - The SYMPTOM Study
The study of factors influencing patient appraisal of symptoms and associations with cancer diagnosis.
- Lead Investigators: Dr Fiona Walter, Prof Jon Emery
- Co-investigators: Prof Greg Rubin, Dr Clare Bankhead, Prof Richard Neal, Dr Katrina Turner, Dr Rafael Perera.
- Theme manager: Dr Helen Morris
- Study researchers: Dr Katie Mills, Dr Nicola Hall, Dr Linda Birt, Ms Christina Benson, Ms Chantal Smeekens,
- Consumer representatives: Mrs Margaret Johnson, Mrs Sue Ballard, Mr Victor Boulter, John Lancaster
The mixed methods design involves a questionnaire-based study of patients referred to hospital for specific symptoms that may be suggestive of lung, colorectal or pancreatic cancer and an in-depth qualitative interview study using a purposive sample of those diagnosed with and without cancer.
Aims and objectives
The aim is to identify factors affecting symptom appraisal and associations with cancer in people referred with symptoms suspicious of the exemplar cancers, in particular
- symptoms associated with later presentation
- symptoms associated with later stage at diagnosis
- other patient factors associated with later presentation or later stage at diagnosis
- to understand the way in which symptoms suggestive of cancer are recognised, interpreted and acted upon by patients
The study is being conducted by researchers at the Universities of Cambridge and Durham. Participants are recruited at Cambridge University Hospitals NHS Foundation Trust (Addenbrooke's), Papworth Hospital and North Tees & Hartlepool NHS Foundation Trust.
Eligible patients aged 40 years and over, recently referred to one of the collaborating hospitals with particular gastrointestinal or respiratory symptoms are identified by research nurses and sent a study pack in the mail. The study pack includes: a covering letter from the hospital consultant; an information sheet; a questionnaire incorporating a consent from; a FREEPOST envelope for the return of the completed questionnaire.
We aim to recruit a total of 7000 patients: 2000 with lung symptoms; 4000 with colorectal symptoms; 1000 with pancreatic symptoms.
The self-administered questionnaire asks about presenting symptoms and their durations before seeking health care. It also elicits details relating to age, gender, marital status, ethnicity, occupation, family history, smoking, education, health literacy and co-morbidities.
With the participants' consent, general practice and hospital medical records will be accessed to identify the diagnostic pathways and time from first presentation of symptoms to diagnosis.
In-depth, face-to-face interviews explore how initial symptoms were noticed, personal risk perceptions, understanding of risk factors, sources of information, the match (or mismatch) between expectations and experiences of the cancer's development, the language used to describe symptoms and how they changed with time, the participant's decision making and movement between stages, the experience of the diagnostic process and the role of partner, family member and friends along their route to diagnosis.
This study aims to identify patient and symptom factors associated with later presentation to health care and determine whether these delays are associated with stage at diagnosis. The in-depth interviews will provide a richer understanding of patient interpretation of symptoms and the language they use to describe them. Overall clinical and demographic features of later presentation of cancer will inform consumer awareness and general-practice-based interventions aimed at earlier diagnosis.
Further information about the SYMPTOM Study can be found at www.medschl.cam.ac.uk/gppcru/projects/SYMPTOMStudy
The Symptom Study PhD
Chantal Smeekens is undertaking a PhD that will provide insight into individuals' help-seeking decisions for symptoms suggestive of cancer. A patient's decision to seek help for a symptom is often complex, and influenced by many factors including their psychosocial and cultural context. Emotion could also have a role in medical help-seeking, health and behaviour, therefore the role of emotion in the patient pathway from symptom detection and appraisal towards help-seeking will be explored. A systematic literature review is underway to identify which emotions influence help-seeking, how emotions are involved, and how the role of emotions varies between cancers and populations. Next, a mixed methods study using interviews and questionnaires will be undertaken among people with symptoms suggestive of colorectal cancer. The aim of this study is to understand more about individuals' responses to their symptoms and medical help-seeking decisions by looking at their emotional reactions to symptoms, their cognitions and subsequent behaviour within the socio-cultural context. It is hoped that the findings will lead to the development of an intervention to reduce the time people take to seek help for their symptoms.
London: Routledge.The self-regulation of health and illness behaviour.
Guilford Press.Emotions and Health. In T. J. Mayne & G. A. Bonnanno (Eds.), Emotions: current issues and future directions (pp. 361-397).
Br J Cancer, 101 Suppl 2, S125-129. doi: 10.1038/sj.bjc.6605402The size of the prize for earlier diagnosis of cancer in England.
Social and Personality Psychology Compass, 4(8), 531-547.Studying help-seeking behaviour for symptoms: The challenges of methods and models.
Journal of Health Services Research & Policy. doi: 10.1258/jhsrp.2011.010113The Andersen Model of Total Patient Delay: a systematic review of its application in cancer diagnosis.
New Discovery Research publication
The SYMPTOM Study team's research into symptom appraisal for colorectal cancer has been published in BMJ Open. This is a unique piece of research which compares the appraisal and help seeking experiences of patients with colorectal cancer symptoms who go on to have cancer and those who turn out to have non-cancer conditions. The research did not identify any clear differences between the two groups but did identify important barriers to presentation around the ‘private nature’ of colorectal symptoms which will prove useful to policy makers and the design of awareness campaigns. To read more about the research paper see the results section here.
Discovery conference slides available & new research publications
The Discovery Programme held its research conference at the Royal College of General Practitioners on June 2nd 2015. The team presented their research findings and outlined the impact of the programme to a wide range of patient groups, clinicians, policy makers, researchers and journalists. The PowerPoint slides used during the presentation have been uploaded to this website and can be viewed here.
There are also 2 new research papers to report. Chantal Balasooriya-Smeekens has published the literature review of her PhD in Psycho-Oncology, "The role of emotions in time to presentation for symptoms suggestive of cancer: a systematic review of quantitative studies". Abstract and publication details are here and further papers from Chantal's PhD will be published soon.
Nafees Din has published a new paper under the Discovery related research umbrella. The paper uses Discovery data drawn from the CAPER (theme 2) studies and considers "Age and Gender Variations in Cancer Diagnostic Intervals in 15 Cancers". Full publication details and abstract can be found here.