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Published in: BMC Health Services Research 1/2012

Open Access 01-12-2012 | Study protocol

A cohort study of the recovery of health and wellbeing following colorectal cancer (CREW study): protocol paper

Authors: Deborah Fenlon, Alison Richardson, Julia Addington-Hall, Peter Smith, Jessica Corner, Jane Winter, Claire Foster

Published in: BMC Health Services Research | Issue 1/2012

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Abstract

Background

The number of people surviving colorectal cancer has doubled in recent years. While much of the literature suggests that most people return to near pre-diagnosis status following surgery for colorectal cancer, this literature has largely focused on physical side effects. Longitudinal studies in colorectal cancer have either been small scale or taken a narrow focus on recovery after surgery. There is a need for a comprehensive, long-term study exploring all aspects of health and wellbeing in colorectal cancer patients. The aim of this study is to establish the natural history of health and wellbeing in people who have been treated for colorectal cancer. People have different dispositions, supports and resources, likely resulting in individual differences in restoration of health and wellbeing. The protocol described in this paper is of a study which will identify who is most at risk of problems, assess how quickly people return to a state of subjective health and wellbeing, and will measure factors which influence the course of recovery.

Methods/design

This is a prospective, longitudinal cohort study following 1000 people with colorectal cancer over a period of two years, recruiting from 30 NHS cancer treatment centres across the UK. Questionnaires will be administered prior to surgery, and 3, 9, 15 and 24 months after surgery, with the potential to return to this cohort to explore on-going issues related to recovery after cancer.

Discussion

Outcomes will help inform health care providers about what helps or hinders rapid and effective recovery from cancer, and identify areas for intervention development to aid this process. Once established the cohort can be followed up for longer periods and be approached to participate in related projects as appropriate and subject to funding.
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Literature
1.
go back to reference Macmillan: Two million reasons: the cancer survivorship agenda. 2008, London: Macmillan Macmillan: Two million reasons: the cancer survivorship agenda. 2008, London: Macmillan
2.
go back to reference Corner J: Addressing the needs of cancer survivors: issues and challenges. Expert Rev Pharmacoecon Outcomes Res. 2008, 8 (5): 443-551.CrossRefPubMed Corner J: Addressing the needs of cancer survivors: issues and challenges. Expert Rev Pharmacoecon Outcomes Res. 2008, 8 (5): 443-551.CrossRefPubMed
3.
go back to reference Department of H: Cancer Reform Strategy. 2007, London DoH Department of H: Cancer Reform Strategy. 2007, London DoH
4.
go back to reference Maher EJ, Makin W: Life after Cancer Treatment - a Spectrum of Chronic Survivorship Conditions. Clin Oncol. 2007, 19: 743-745.CrossRef Maher EJ, Makin W: Life after Cancer Treatment - a Spectrum of Chronic Survivorship Conditions. Clin Oncol. 2007, 19: 743-745.CrossRef
5.
go back to reference Hewitt M, Rowland JH, et al: Cancer survivors in the United States: age, health, and disability. J Gerontol A Biol Sci Med Sci. 2003, 58 (1): 82-91.CrossRefPubMed Hewitt M, Rowland JH, et al: Cancer survivors in the United States: age, health, and disability. J Gerontol A Biol Sci Med Sci. 2003, 58 (1): 82-91.CrossRefPubMed
6.
go back to reference Nord C, Mykletun A, et al: Self-reported health and use of health care services in long-term cancer survivors. Int J Cancer. 2005, 114 (2): 307-316.CrossRefPubMed Nord C, Mykletun A, et al: Self-reported health and use of health care services in long-term cancer survivors. Int J Cancer. 2005, 114 (2): 307-316.CrossRefPubMed
7.
go back to reference Elliott J, Fallows A, et al: The health and well-being of cancer survivors in the UK: findings from a population-based survey. Br J cancer. 2011, 105: S11-S20.CrossRefPubMedPubMedCentral Elliott J, Fallows A, et al: The health and well-being of cancer survivors in the UK: findings from a population-based survey. Br J cancer. 2011, 105: S11-S20.CrossRefPubMedPubMedCentral
8.
go back to reference Foster C, Wright D, et al: Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence. Eur J Cancer Care. 2009, 18: 223-247.CrossRef Foster C, Wright D, et al: Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence. Eur J Cancer Care. 2009, 18: 223-247.CrossRef
9.
go back to reference van de Poll-Franse LV, Mols F, et al: Increased health care utilisation among 10-year breast cancer survivors. Supportive Care Cancer. 2006, 14 (5): 436-443.CrossRef van de Poll-Franse LV, Mols F, et al: Increased health care utilisation among 10-year breast cancer survivors. Supportive Care Cancer. 2006, 14 (5): 436-443.CrossRef
10.
go back to reference Walter S, Rachet B, et al: Cancer survival, England, patients diagnosed 2001-2006 and followed up to 2007: one-year and five-year survival for 21 common cancers, by sex and age. 2009 Walter S, Rachet B, et al: Cancer survival, England, patients diagnosed 2001-2006 and followed up to 2007: one-year and five-year survival for 21 common cancers, by sex and age. 2009
12.
go back to reference Excellence NIfC: Guidance on cancer services: Improving supportive and palliative care for adults with cancer. 2004, The Manual, National Institute for Clinical Excellence Excellence NIfC: Guidance on cancer services: Improving supportive and palliative care for adults with cancer. 2004, The Manual, National Institute for Clinical Excellence
13.
go back to reference Ramsey SD, Andersen MR, et al: Quality of life in survivors of colorectal carcinoma. Cancer. 2000, 88 (6): 1294-1303.CrossRefPubMed Ramsey SD, Andersen MR, et al: Quality of life in survivors of colorectal carcinoma. Cancer. 2000, 88 (6): 1294-1303.CrossRefPubMed
14.
go back to reference Arndt V, Merx H, et al: Quality of life in patients with colorectal cancer 1 year after diagnosis compared with the general population: a population based study. J Clin Oncol. 2004, 22 (23): 4777-4784.CrossRef Arndt V, Merx H, et al: Quality of life in patients with colorectal cancer 1 year after diagnosis compared with the general population: a population based study. J Clin Oncol. 2004, 22 (23): 4777-4784.CrossRef
15.
go back to reference Bailey C, Corner J, et al: Older patients' experiences of treatment for colorectal cancer: an analysis of functional status and service use. Eur J Cancer Care (Engl). 2004, 13 (5): 483-493.CrossRef Bailey C, Corner J, et al: Older patients' experiences of treatment for colorectal cancer: an analysis of functional status and service use. Eur J Cancer Care (Engl). 2004, 13 (5): 483-493.CrossRef
16.
go back to reference Engel J, Kerr J, et al: Quality of life in rectal cancer patients: a four-year prospective study. Ann Surg. 2003, 238 (2): 203-213.PubMedPubMedCentral Engel J, Kerr J, et al: Quality of life in rectal cancer patients: a four-year prospective study. Ann Surg. 2003, 238 (2): 203-213.PubMedPubMedCentral
17.
go back to reference Dunn J, Lynch BM, et al: Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients. Psycho Oncology. 2006, 15 (1): 20-30.CrossRefPubMed Dunn J, Lynch BM, et al: Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients. Psycho Oncology. 2006, 15 (1): 20-30.CrossRefPubMed
18.
go back to reference Cotrim H, Pereira G: Impact of colorectal cancer on patient and family: implications for care. Eur J Oncol Nurs. 2008, 12 (3): 217-226.CrossRefPubMed Cotrim H, Pereira G: Impact of colorectal cancer on patient and family: implications for care. Eur J Oncol Nurs. 2008, 12 (3): 217-226.CrossRefPubMed
19.
go back to reference Sanchez KM, Richardson JL, et al: The return to work experiences of colorectal cancer survivors. AAOHN J. 2004, 52 (12): 187-203. Sanchez KM, Richardson JL, et al: The return to work experiences of colorectal cancer survivors. AAOHN J. 2004, 52 (12): 187-203.
20.
go back to reference Desnoo L, Faithfull S: A qualitative study of anterior resection syndrome: the experiences of cancer survivors who have undergone resection surgery. Eur J Cancer Care. 2006, 15 (3): 244-251.CrossRef Desnoo L, Faithfull S: A qualitative study of anterior resection syndrome: the experiences of cancer survivors who have undergone resection surgery. Eur J Cancer Care. 2006, 15 (3): 244-251.CrossRef
21.
go back to reference Persson E, Hellstrom A: Experiences of Swedish men and women 6 to 12 weeks after ostomy surgery. J Wound Ostomy Continence Nurs. 2002, 29 (2): 103-108.PubMed Persson E, Hellstrom A: Experiences of Swedish men and women 6 to 12 weeks after ostomy surgery. J Wound Ostomy Continence Nurs. 2002, 29 (2): 103-108.PubMed
22.
go back to reference Taylor C, Richards A, et al: Restoring embodied control following surgical treatment for colorectal cancer: A longitudinal qualitative study. Int J Nurs Stud. 2010, 47 (8): 946-956.CrossRefPubMed Taylor C, Richards A, et al: Restoring embodied control following surgical treatment for colorectal cancer: A longitudinal qualitative study. Int J Nurs Stud. 2010, 47 (8): 946-956.CrossRefPubMed
23.
go back to reference Lynch BM, Steginga S, et al: Describing and predicting psychological distress after colorectal cancer. Am Cancer Soc. 2008, 112 (6): 1363-1370. Lynch BM, Steginga S, et al: Describing and predicting psychological distress after colorectal cancer. Am Cancer Soc. 2008, 112 (6): 1363-1370.
25.
go back to reference Sprangers MA, te Velde A, et al: The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Eur J Cancer. 1999, 35 (2): 238-247.CrossRefPubMed Sprangers MA, te Velde A, et al: The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Eur J Cancer. 1999, 35 (2): 238-247.CrossRefPubMed
26.
go back to reference Aaronson N, Ahmedzai KS, et al: The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993, 85 (5): 365-376.CrossRefPubMed Aaronson N, Ahmedzai KS, et al: The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993, 85 (5): 365-376.CrossRefPubMed
27.
go back to reference Whistance RN, Conroy T, et al: Clinical and psychometric validation of the EORTC QLQ-CR29 questionnaire module to assess health-related quality of life in patients with colorectal cancer. Eur J Cancer. 2009, 45 (17): 3017-3026.CrossRefPubMed Whistance RN, Conroy T, et al: Clinical and psychometric validation of the EORTC QLQ-CR29 questionnaire module to assess health-related quality of life in patients with colorectal cancer. Eur J Cancer. 2009, 45 (17): 3017-3026.CrossRefPubMed
28.
go back to reference Schofield P, Gough K, et al: Validation of the Supportive Care Needs Survey--short form 34 with a simplified response format in men with prostate cancer. Psycho Oncol. 2011 Schofield P, Gough K, et al: Validation of the Supportive Care Needs Survey--short form 34 with a simplified response format in men with prostate cancer. Psycho Oncol. 2011
29.
go back to reference Avis NE, Smith KW, et al: Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res. 2005, 14 (4): 1007-1023.CrossRefPubMed Avis NE, Smith KW, et al: Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res. 2005, 14 (4): 1007-1023.CrossRefPubMed
30.
go back to reference Cummins R, Eckersley R, et al: Developing a national index of subjective wellbeing: the Australian Unity Wellbeing index. Social Indicators Res. 2003, 64: 159-190.CrossRef Cummins R, Eckersley R, et al: Developing a national index of subjective wellbeing: the Australian Unity Wellbeing index. Social Indicators Res. 2003, 64: 159-190.CrossRef
32.
go back to reference Cummins R: Normative life satisfaction: measurement issues and homeostatic model. Social Indicators Res. 2003, 64: 225-256.CrossRef Cummins R: Normative life satisfaction: measurement issues and homeostatic model. Social Indicators Res. 2003, 64: 225-256.CrossRef
33.
go back to reference Cummins RA, Lau AL: 6th Australian conference on quality of life: understanding subjective well-being. Expert Rev Pharmacoecon Outcomes Res. 2005, 5 (1): 11-14.CrossRefPubMed Cummins RA, Lau AL: 6th Australian conference on quality of life: understanding subjective well-being. Expert Rev Pharmacoecon Outcomes Res. 2005, 5 (1): 11-14.CrossRefPubMed
34.
go back to reference Brugha T, Bebbington P, et al: The List of Threatening Experiences: a subset of 12 life event categories with considerable long-term contextual threat. Psychol Med. 1985, 15 (1): 189-194.CrossRefPubMed Brugha T, Bebbington P, et al: The List of Threatening Experiences: a subset of 12 life event categories with considerable long-term contextual threat. Psychol Med. 1985, 15 (1): 189-194.CrossRefPubMed
35.
go back to reference Moss-Morris R, Weinman J, et al: The Revised Illness Perception Questionnaire (IPQ-R). Psychol Health. 2002, 17 (1): 1-16.CrossRef Moss-Morris R, Weinman J, et al: The Revised Illness Perception Questionnaire (IPQ-R). Psychol Health. 2002, 17 (1): 1-16.CrossRef
36.
go back to reference Lorig K, Ritter RP, et al: Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001, 39 (11): 1217-1223.CrossRefPubMed Lorig K, Ritter RP, et al: Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001, 39 (11): 1217-1223.CrossRefPubMed
37.
go back to reference Porter LS, Keefe FJ, et al: Self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their informal caregivers: associations with symptoms and distress. Pain. 2008, 137 (2): 306-315.CrossRefPubMed Porter LS, Keefe FJ, et al: Self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their informal caregivers: associations with symptoms and distress. Pain. 2008, 137 (2): 306-315.CrossRefPubMed
38.
go back to reference Porter LS, Keefe FJ, et al: Perceptions of patients' self-efficacy for managing pain and lung cancer symptoms: correspondence between patients and family caregivers. Pain. 2002, 98 (1-2): 169-178.CrossRefPubMed Porter LS, Keefe FJ, et al: Perceptions of patients' self-efficacy for managing pain and lung cancer symptoms: correspondence between patients and family caregivers. Pain. 2002, 98 (1-2): 169-178.CrossRefPubMed
39.
go back to reference Watson D, Clark L, et al: Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Social Psychol. 1998, 54: 1063-1070.CrossRef Watson D, Clark L, et al: Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Social Psychol. 1998, 54: 1063-1070.CrossRef
40.
go back to reference Thompson ER: Development and validation of an internationally reliable short-form of the positive and negative affect schedule (PANAS). J Cross-Cultural Psychol. 2007, 38 (2): 227.CrossRef Thompson ER: Development and validation of an internationally reliable short-form of the positive and negative affect schedule (PANAS). J Cross-Cultural Psychol. 2007, 38 (2): 227.CrossRef
41.
go back to reference Bellizzi KM, Blank TO: Cancer-related identity and positive affect in survivors of prostate cancer. J Cancer Surviv. 2007, 1 (1): 44-48.CrossRefPubMed Bellizzi KM, Blank TO: Cancer-related identity and positive affect in survivors of prostate cancer. J Cancer Surviv. 2007, 1 (1): 44-48.CrossRefPubMed
42.
go back to reference Voogt E, van der Heide A, et al: Positive and negative affect after diagnosis of advanced cancer. Psychooncology. 2005, 14 (4): 262-273.CrossRefPubMed Voogt E, van der Heide A, et al: Positive and negative affect after diagnosis of advanced cancer. Psychooncology. 2005, 14 (4): 262-273.CrossRefPubMed
43.
go back to reference Radloff LS: The CES-D Scale: A self-report depression scale for research in the general population. Appl Phychological Meas. 1977, 1: 385-401.CrossRef Radloff LS: The CES-D Scale: A self-report depression scale for research in the general population. Appl Phychological Meas. 1977, 1: 385-401.CrossRef
44.
go back to reference Hann D, Winter K, et al: Measurement of depressive symptoms in cancer patients: evaluation of the Center for Epidemiological Studies Depression Scale (CES-D). J Psychosom Res. 1999, 46 (5): 437-443.CrossRefPubMed Hann D, Winter K, et al: Measurement of depressive symptoms in cancer patients: evaluation of the Center for Epidemiological Studies Depression Scale (CES-D). J Psychosom Res. 1999, 46 (5): 437-443.CrossRefPubMed
45.
go back to reference van Wilgen CP, Dijkstra PU, et al: Measuring somatic symptoms with the CES-D to assess depression in cancer patients after treatment: comparison among patients with oral/oropharyngeal, gynecological, colorectal, and breast cancer. Psychosomatics. 2006, 47 (6): 465-470.CrossRefPubMed van Wilgen CP, Dijkstra PU, et al: Measuring somatic symptoms with the CES-D to assess depression in cancer patients after treatment: comparison among patients with oral/oropharyngeal, gynecological, colorectal, and breast cancer. Psychosomatics. 2006, 47 (6): 465-470.CrossRefPubMed
46.
go back to reference Zonderman AB, Costa PT, et al: Depression as a risk for cancer morbidity and mortality in a nationally representative sample. JAMA: J Am Med Assoc. 1989, 262 (9): 1191-1195.CrossRef Zonderman AB, Costa PT, et al: Depression as a risk for cancer morbidity and mortality in a nationally representative sample. JAMA: J Am Med Assoc. 1989, 262 (9): 1191-1195.CrossRef
47.
go back to reference Spielberger CD, Gorsuch RL, et al: Manual for the State-Trait Anxiety Inventory (Form Y). 1983, Mind Gardens, Redwood City: Palo Alto Spielberger CD, Gorsuch RL, et al: Manual for the State-Trait Anxiety Inventory (Form Y). 1983, Mind Gardens, Redwood City: Palo Alto
48.
49.
go back to reference Kornblith AB, Mirabeau-Beale K, et al: Long-term adjustment of survivors of ovarian cancer treated for advanced-stage disease. J Psychosoc Oncol. 2010, 28 (5): 451-469.CrossRefPubMed Kornblith AB, Mirabeau-Beale K, et al: Long-term adjustment of survivors of ovarian cancer treated for advanced-stage disease. J Psychosoc Oncol. 2010, 28 (5): 451-469.CrossRefPubMed
50.
go back to reference Carver CS: You want to measure coping but your protocol's too long: consider the brief COPE. Int J Behav Med. 1997, 4 (1): 92-100.CrossRefPubMed Carver CS: You want to measure coping but your protocol's too long: consider the brief COPE. Int J Behav Med. 1997, 4 (1): 92-100.CrossRefPubMed
51.
go back to reference Horney DJ, Smith HE, et al: Associations between quality of life, coping styles, optimism, and anxiety and depression in pretreatment patients with head and neck cancer. Head Neck. 2011, 33 (1): 65-71.CrossRefPubMed Horney DJ, Smith HE, et al: Associations between quality of life, coping styles, optimism, and anxiety and depression in pretreatment patients with head and neck cancer. Head Neck. 2011, 33 (1): 65-71.CrossRefPubMed
52.
go back to reference Scrignaro M, Barni S, et al: The combined contribution of social support and coping strategies in predicting post-traumatic growth: a longitudinal study on cancer patients. Psycho Oncol. 2010, n/a-n/a. Scrignaro M, Barni S, et al: The combined contribution of social support and coping strategies in predicting post-traumatic growth: a longitudinal study on cancer patients. Psycho Oncol. 2010, n/a-n/a.
53.
go back to reference Yusoff N, Low WY, et al: Reliability and validity of the Brief COPE Scale (English version) among women with breast cancer undergoing treatment of adjuvant chemotherapy: a Malaysian study. Med J Malaysia. 2010, 65 (1): 41-44.PubMed Yusoff N, Low WY, et al: Reliability and validity of the Brief COPE Scale (English version) among women with breast cancer undergoing treatment of adjuvant chemotherapy: a Malaysian study. Med J Malaysia. 2010, 65 (1): 41-44.PubMed
54.
go back to reference Engel J, Kerr J, et al: Quality of life in rectal cancer patients: a four year prospective study. Annals of Surgery. 2003, 238: 203-213.PubMedPubMedCentral Engel J, Kerr J, et al: Quality of life in rectal cancer patients: a four year prospective study. Annals of Surgery. 2003, 238: 203-213.PubMedPubMedCentral
Metadata
Title
A cohort study of the recovery of health and wellbeing following colorectal cancer (CREW study): protocol paper
Authors
Deborah Fenlon
Alison Richardson
Julia Addington-Hall
Peter Smith
Jessica Corner
Jane Winter
Claire Foster
Publication date
01-12-2012
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2012
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/1472-6963-12-90

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