Development of a core information set for colorectal cancer surgery: a consensus study

Angus G K McNair, Robert N Whistance, Barry Main, Rachael Forsythe, Rhiannon Macefield, Jonathan Rees, Anne Pullyblank, Kerry Avery, Sara Brookes, Michael G Thomas, Paul A Sylvester, Ann Russell, Alfred Oliver, Dion Morton, Robin Kennedy, David Jayne, Richard Huxtable, Roland Hackett, Susan Dutton, Mark G ColemanMia Card, Julia Brown, Jane Blazeby

Research output: Contribution to journalArticle (Academic Journal)

Abstract

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.

Original languageEnglish
Pages (from-to)e028623
JournalBMJ Open
Volume9
Issue number11
DOIs
Publication statusPublished - 14 Nov 2019

Bibliographical note

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.

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  • Cite this

    McNair, A. G. K., Whistance, R. N., Main, B., Forsythe, R., Macefield, R., Rees, J., Pullyblank, A., Avery, K., Brookes, S., Thomas, M. G., Sylvester, P. A., Russell, A., Oliver, A., Morton, D., Kennedy, R., Jayne, D., Huxtable, R., Hackett, R., Dutton, S., ... Blazeby, J. (2019). Development of a core information set for colorectal cancer surgery: a consensus study. BMJ Open, 9(11), e028623. https://doi.org/10.1136/bmjopen-2018-028623