Development of a core information set for colorectal cancer surgery: a consensus study
Angus G K McNair,
David Jayne,
Mark G Coleman,
Jane Blazeby,
Kerry Avery,
Richard Huxtable,
Jonathan Rees,
Dion Morton,
Sara Brookes,
Rachael Forsythe,
Anne Pullyblank,
Rhiannon Macefield,
Barry Main,
Julia Brown,
Robert N Whistance,
Michael G Thomas,
Paul A Sylvester,
Ann Russell,
Alfred Oliver,
Robin Kennedy,
Roland Hackett,
Mia Card
Affiliations
Angus G K McNair
National Institute for Health and Care Research Bristol Biomedical Research Centre, Bristol Centre for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol, Bristol, UK
David Jayne
Addenbrooke`s Hospital, Cambridge, UK
Mark G Coleman
16 Department of Surgery, University Hospitals Plymouth NHS Trust, Derriford Hospital, Plymouth, UK
Jane Blazeby
professor
Kerry Avery
National Institute for Health and Care Research Bristol Biomedical Research Centre, Bristol Centre for Surgical Research, Bristol Medical School, Population Health Sciences, University of Bristol, Bristol, UK
Richard Huxtable
Centre for Ethics in Medicine, University of Bristol; Institute of Hospice and Palliative Care in Africa, Hospice Africa Uganda; All Ireland Institute of Hospice and Palliative Care; Institute of Hospice and Palliative Care in Africa, Hospice Africa Uganda; Centre for Ethics in Medicine, University of Bristol; Population Health Sciences, University of Bristol
Jonathan Rees
Brockway Medical Centre, Bristol, UK
Dion Morton
10 Academic Department of Surgery, University of Birmingham, Birmingham, UK
Sara Brookes
Institute of Cancer and Genomic Sciences, University of Birmingham, Birmingham, UK
Rachael Forsythe
3 Centre for Cardiovascular Science, University of Edinburgh, Edinburgh, UK
Anne Pullyblank
3 West of England Academic Health Science Network, Bristol, UK
Rhiannon Macefield
National Institute for Health and Care Research Bristol Biomedical Research Centre, Bristol Centre for Surgical Research, Bristol Medical School, Population Health Sciences, University of Bristol, Bristol, UK
Barry Main
1 Bristol Dental School, Faculty of Health Sciences, University of Bristol, Bristol, UK
Julia Brown
8 Leeds Institute of Clinical Trials Research, University of Leeds, Leeds, UK
Robert N Whistance
1 Centre for Surgical Research, Bristol Medical School: Population Health Sciences, University of Bristol, Bristol, UK
Michael G Thomas
4 Division of Surgery, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
Paul A Sylvester
4 Division of Surgery, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
Ann Russell
9 Consumer Liaison Group, National Cancer Research Institute, London, UK
Alfred Oliver
6National Cancer Research Institute, Consumer Liaison Group, Trans-Humber Consumer Research Panel, London, UK
Robin Kennedy
11 Department of Surgery, St Mark`s Hospital, London, UK
Roland Hackett
14 Colorectal Site Specific Group, South West Cancer Network, Bristol, UK
Mia Card
4 Division of Surgery, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
Objective ‘Core information sets’ (CISs) represent baseline information, agreed by patients and professionals, to stimulate individualised patient-centred discussions. This study developed a CIS for use before colorectal cancer (CRC) surgery.Design Three phase consensus study: (1) Systematic literature reviews and patient interviews to identify potential information of importance to patients, (2) UK national Delphi survey of patients and professionals to rate the importance of the information, (3) international consensus meeting to agree on the final CIS.Setting UK CRC centres.Participants Purposive sampling was conducted to ensure CRC centre representation based upon geographical region and caseload volume. Responses were received from 63/81 (78%) centres (90 professionals). Adult patients who had undergone CRC surgery were eligible, and purposive sampling was conducted to ensure representation based on age, sex and cancer location (rectum, left and right colon). Responses were received from 97/267 (35%) patients with a wide age range (29–87), equal sex ratio and cancer location. Attendees of the international Tripartite Colorectal Conference were eligible for the consensus meeting.Outcomes Phase 1: Information of potential importance to patients was extracted verbatim and operationalised into a Delphi questionnaire. Phase 2: Patients and professionals rated the importance information on a 9-point Likert scale, and resurveyed following group feedback. Information rated of low importance were discarded using predefined criteria. Phase 3: A modified nominal group technique was used to gain final consensus in separate consensus meetings with patients and professionals.Results Data sources identified 1216 pieces of information that informed a 98-item questionnaire. Analysis led to 50 and 23 information domains being retained after the first and second surveys, respectively. The final CIS included 11 concepts including specific surgical complications, short and long-term survival, disease recurrence, stoma and quality of life issues.Conclusions This study has established a CIS for professionals to discuss with patients before CRC surgery.
