title: Health-related quality of life after colorectal cancer in England: a patient-reported outcomes study of individuals 12 to 36 months after diagnosis.
abstract: OBJECTIVE
  This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes.
  
  
  METHODS
  All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items).
  
  
  RESULTS
  The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other LTCs, those with active or recurrent disease, those with a stoma, and those at the extremes of the age range (< 55 and > 85 years). Of respondents without a stoma, 16.3% reported no bowel control. Reversal of a stoma resulted in fewer severe bowel problems but more moderate problems than those who had never had a stoma. A quarter of rectal cancer respondents (25.1%) reported difficulties with sexual matters (compared with 11.2% of colon cancer respondents).
  
  
  CONCLUSIONS
  This study demonstrates the success of a national patient-reported outcomes survey. The results have the potential to support system-wide improvement in health outcomes through the identification of particular challenges faced by individuals after treatment for CRC.
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Amy
authors.initials: A
authors.lastname: Downing
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Eva J A
authors.initials: EJ
authors.lastname: Morris
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Mike
authors.initials: M
authors.lastname: Richards
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Jessica
authors.initials: J
authors.lastname: Corner
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Penny
authors.initials: P
authors.lastname: Wright
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: David
authors.initials: D
authors.lastname: Sebag-Montefiore
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Paul
authors.initials: P
authors.lastname: Finan
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Paul
authors.initials: P
authors.lastname: Kind
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Charlotte
authors.initials: C
authors.lastname: Wood
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Sarah
authors.initials: S
authors.lastname: Lawton
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Richard
authors.initials: R
authors.lastname: Feltbower
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Richard
authors.initials: R
authors.lastname: Wagland
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: Sally
authors.initials: S
authors.lastname: Vernon
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom.
authors.forename: James
authors.initials: J
authors.lastname: Thomas
authors.affiliation: Amy Downing, Eva J.A. Morris, Penny Wright, David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Institute of Cancer and Pathology, University of Leeds, St James's University Hospital; David Sebag-Montefiore, Paul Finan, and Adam W. Glaser, Leeds Teaching Hospitals NHS Trust, St James's University Hospital; Paul Kind, Leeds Institute of Health Sciences, University of Leeds; Richard Feltbower, Leeds Institute of Genetics, Health, and Therapeutics, University of Leeds; James Thomas, National Cancer Registration Service (Northern and Yorkshire), Public Health England, St James's University Hospital, Leeds; Mike Richards, Care Quality Commission; Paul Finan, National Cancer Intelligence Network, London; Jessica Corner and Richard Wagland, University of Southampton, Highfield, Southampton; Charlotte Wood and Sarah Lawton, Knowledge and Intelligence Team (Northern and Yorkshire), Public Health England, York; and Sally Vernon, National Cancer Registration Service (Eastern), Public Health England, Cambridge, United Kingdom. Adam.glaser@leedsth.nhs.uk.
authors.forename: Adam W
authors.initials: AW
authors.lastname: Glaser
mesh_terms: D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D015179:Colorectal Neoplasms / Q000453:epidemiology / Q000503:physiopathology* / Q000523:psychology; D004739:England / Q000453:epidemiology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D057566:Self Report; D011795:Surveys and Questionnaires