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.DesignThree 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.SettingUK CRC centres.ParticipantsPurposive 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.OutcomesPhase 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.ResultsData 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.ConclusionsThis study has established a CIS for professionals to discuss with patients before CRC surgery.

Evaluation of interventions in people with digestive stoma through the Nursing Interventions Classification

“…Problems after surgery, such as anastomotic leakage, surgical site infection, or skin problems around the stoma itself, may be the source of major complications that reduce the patient's quality of life, resulting in a negative impact on survival rates (Aoyama et al., 2017; Burch, 2014; da Silva et al., 2014; Zhang et al., 2019). Understanding and weighing up the nature and consequences of treatment based on personal values is thus an important part of the journey of cancer (McNair et al., 2019). Therefore, nurses are a perfect reference point for both patients and families when it comes to ensuring knowledge of self‐care and adaptation to the new situation with the highest possible quality of life (Capilla‐Díaz et al., 2019).…”

A scoping review of information provided within degenerative cervical myelopathy education resources: Towards enhancing shared decision making

“…CIS are therefore designed to be a starting point to help professionals, patients and their carers ensure key information is considered. They are intended to be personalised during each consultation and have been pioneered in surgical oncology [ 63 – 65 ].…”

Information needs for recovery after colorectal surgery: a patient focus group study

“…McNair and colleagues recently developed a 'core information set' during a consensus exercise with patients and healthcare professionals. They identified 11 key items with a focus on surgical complications (such as anastomotic leak and surgical site infection), survival, stomas and quality of life [5]. This demonstrated the importance of involving patients at an early stage in the development process.…”

“…A core information set for colorectal cancer surgery was recently developed to standardize the content of this process. This was produced collaboratively between patients and healthcare professionals to ensure that all relevant content needs were considered [5]. Other aspects of information provision, such as the format of delivery, timing and design, are also important.…”