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

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.

Metadata

Authors/Creators:

McNair, AGK
Whistance, RN
Main, B
Forsythe, R
Macefield, R
Rees, J
Pullyblank, A
Avery, K
Brookes, S
Thomas, MG
Sylvester, PA
Russell, A
Oliver, A
Morton, D
Kennedy, R
Jayne, D https://orcid.org/0000-0002-8725-3283
Huxtable, R
Hackett, R
Dutton, S
Coleman, MG
Card, M
Brown, J https://orcid.org/0000-0002-2719-7064
Blazeby, J

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

Dates:

Accepted: 24 June 2019
Published (online): 14 November 2019
Published: November 2019

Institution:

The University of Leeds

Academic Units:

The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Inst of Clinical Trials Research (LICTR) (Leeds)

Funding Information:

Funder	Grant number
NIHR National Inst Health Research	Not Known
NIHR National Inst Health Research	NF-SI-0617-10070

Depositing User:

Symplectic Publications

Date Deposited:

12 Mar 2020 12:15

Last Modified:

12 Mar 2020 12:15

Status:

Published

Publisher:

BMJ

Identification Number:

https://doi.org/10.1136/bmjopen-2018-028623

CORE (COnnecting REpositories)

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

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