The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) has published a review of the care received by patients aged 16 and over undergoing surgery for Crohn’s Disease titled: 'Making the cut?'
Based on data from two periods (1 September 2019 to 29 February 2020 and 1 September 2020 to 28 February 2021), analysis was undertaken on questionnaires from 553 clinicians, 414 sets of case notes, and 138 organisational questionnaires, all supported by qualitative data from patient surveys and focus groups.
Key findings included:
- The reviewers found evidence of psychological support across the care pathway in just 9.0% cases reviewed, even though patients had undergone major surgery.
- Services that the patients would have liked but did not receive included psychological support (42.6%) and dietetic support (34.8%).
- 54.1% patients saw neither an inflammatory bowel disease (IBD) nurse nor a gastroenterologist postoperatively.
- Re-adjustments of Crohn’s disease medication may be required after surgery to reduce the postoperative risks of immunosuppression, yet a pharmacist was only involved for 46.7% patients.
The report found, for patients with drug resistant Crohn’s disease, surgery should be considered earlier in the treatment pathway, instead of surgery being perceived as a failure of medical management. It states that, once a decision to perform surgery has been made, it should be undertaken within a month to prevent patients on elective waiting lists deteriorating and requiring emergency surgery. Other key messages include:
- Holistic support should be provided for all patients with Crohn’s disease, as they have many wider health needs e.g. psychological, dietary and peer support
- Medication for Crohn’s disease should be managed effectively at all stages of the pathway, and
- All multidisciplinary team discussions should be documented in the patient’s clinical record at the time of the meeting, with a summary provided to the patient and their GP.
The report makes a number of recommendations which highlight areas that are suitable for regular local clinical audit and quality improvement initiatives by those providing care to this group of patients. It goes on to suggest that the results of such work should be presented at quality or governance meetings and action plans to improve care should be shared with executive boards.
Ian Martin, NCEPOD Chair, commented: “There is a plethora of authoritative guidance from august bodies, highlighting the need for multidisciplinary care, and a co-ordinated approach to management, not least between gastroenterologists and surgeons. However, this report identifies that all too often this does not happen. In consequence, for example, many patients, clearly resistant to medical therapy who might well benefit from early surgical intervention are not receiving this choice, and instead exposed to long-term steroid therapy, with all its attendant complications, or end up being admitted and operated on as an emergency, which could have been avoided if better planning had occurred.
“This is predominantly a disease that affects young adults during what should be their most productive years, and so quite apart from the chronic and often painful symptoms they experience, there can be profound socio-economic consequences. However, despite this, unlike cancer, it appears to have the status of a ‘benign’ disease, which may be why it has not so far received the same levels of attention, investment and organisation.”
Read the full report here
