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Cohort study to explore the recovery of health and well-being
following primary treatment (the CREW study)
Macmillan Survivorship Research Group, University of Southampton
MSRG Stream 1 Project 1
Claire Foster
Email: [email protected]
Summary
A cohort of colorectal cancer patients has been established and will be followed over time to
map their recovery following primary surgery. The study will provide information on a range
of variables associated with health and well-being and assess the relative importance of
personal attributes, environmental supports and resources, socio-demographic and clinical
factors in recovery. This project is funded as part of the Southampton Macmillan
Survivorship Research Group (MSRG) Programme Grant.
Background
Survivors of colorectal cancer form the largest group of cancer survivors affecting men and
women. Incidence is high and survival rates have doubled in recent years with around
250,000 UK survivors. Survival rates are around 52% across all stages with little decline in
survival beyond five years at which point survivors are deemed to be cured. Poor quality of
life has been identified in the three years following diagnosis with the greatest impact on
pain, functional and social well being; self care capacity, mental health and activity level
deteriorate following colorectal surgery. Low socio-economic status is associated with poorer
quality of life in this group of survivors; worry about recurrence can impair health and well
being and social support can have a positive role. However, how health and well being
change over time is not clear.
This project is following a group of survivors over time to:
1. Identify who is most at risk of problems
2. Explore factors which aid/hinder restoration of health and well-being
3. Identify areas that could be improved through appropriate follow-up or self management
support
4. Make recommendation for where interventions/services should be targeted to support
survivors in an effort to prevent problems occurring or reduce their impact
Patients receive a number of validated questionnaires at five time points. The primary
outcome of the study will be ‘health and well-being’ as measured by the Quality of Life in
Adult Cancer Survivors (QLACS) which measures seven generic domains (eg pain fatigue
etc) and five cancer specific problems (eg recurrence distress, appearance concerns etc).
Key Findings
1055 colorectal patients have been recruited from 29 cancer centres over 17 months.
1350 eligible people attended clinics in the 29 cancer centres during the recruitment
period of 17 months. 1233 (91%) of these were approached about participating in the
study (9% missed); of whom 911 (67%) fully consented; 144 (11%) gave reduced
consent for medical record information only to be collected (i.e. no questionnaires);
and 178 (13%) declined to participate.
There are no significant differences in comparisons of demographic variables across
high recruiting centres (>70 participants; n = 3), medium recruiting centres (21-69
participants; n =11) and low recruiting centres (<20 participants; n = 15); except that
the participants from the high recruiting centres had higher unemployment rates
(P=0.007).
59.2 per cent of the cohort reported at baseline are men. 71.3 per cent are married
or living with a partner. 93.5 per cent describe themselves as White British. Most
men (68.0%) and women (70.7%) are currently retired. The median age for women
is 68 years old (range 32–91 years), and 68 years old (range 32–95 years) for men.
79.5 per cent of the sample owns their own home.
The study concludes in 2014.
Why is this work important?
This project will directly contribute to the wider understanding of those living after a cancer
diagnosis, particularly in understanding the issues influencing the restoration of health and
well-being, and areas for potential supported self-management by colorectal patients. As
well as improving our understanding of recovery after cancer, this study will add the patient
voice and perspective to complement and inform the Natural History Risk Stratification
Project funded by the Macmillan through the National Cancer Survivorship Initiative (NCSI)
and projects arising from the Supported Self Management Work stream of the NCSI.
Publications
Fenlon, D., Richardson, A., Addington-Hall, J., Smith, P., Corner, J., Winter, J. and
Foster, C. A cohort study of the recovery of health and wellbeing following colorectal
cancer (CREW study): protocol paper. BMC Health Services Research 2012,
12:90 doi:10.1186/1472-6963-12-90