Waiting time in IBD surgery

‘Waiting is the hardest part’. This feeling was described in the song by Tom Petty and the Heartbreakers, and has indeed been the inspiration for many poems and sentimental lyrics. Although it will not be primarily associated with waiting times in daily clinical practice, patients that are on a surgical list can probably relate to the sentiments behind these words. Since ‘waiting’ does not only result in mental burden, but also might interfere with uncomplicated postoperative recovery, most countries have set a norm for maximal waiting times. This frequently involves an indication of maximal time to first outpatient visit, as well as time between diagnosis and start of first treatment. In the Netherlands, the ‘Treeknorm’ (named after the place where the meeting was held) was introduced in the year 2000. All parties involved agreed that for elective care, a maximal waiting time of 5 weeks before the start of any treatment was acceptable. However, at the same time, it became clear that there could be no official consequence for breaking this ‘rule’. In 2009, the Dutch Surgical Colorectal Audit was introduced, copying the Swiss national registry, with the aim of improving quality of care. In line with most commonly used definitions of health care quality the degree to which health services for individuals increase the likelihood of desired health outcomes one of the goals was to achieve compliance of the national waiting times standards [1]. These now so-called ‘cancer-waittimes’ were considered to be a strong indicator of quality of cancer treatment by patients, public, and insurance companies. Nowadays, all Dutch hospitals participate in the cancer registry, and adhering to the ‘Treeknorm’ became an official performance indicator, which is monitored by government and insurance parties (at least 80% of patients treated per hospital should fall within this norm). Similarly, most other European countries have a comparable ‘guideline’ for cancer care, which is monitored by various registries. This organisation is in sharp contrast to surgical IBDcare. Although the Ileal Pouch Registry by the Association of Coloproctology of Great Britain and Ireland has been initiated [2], welcoming contributions from all over Europe, the registry is dependent on voluntary data submission. So far, this single procedure database is predominantly used to guide the volume-outcome relationship discussion. Various initiatives to improve IBD care have been employed covering other aspects, for example the presence of a multidisciplinary team, specialized IBD-nurses, as well as the development of apps, but generally nothing is said about maximum waiting times [3]. This is surprising, as many patient groups try to bring attention to the problem. Over the last few years, the ‘waiting-list-problem’ has become increasingly urgent, as with the introduction of the colorectal cancer-screening program a further increase in waiting times was expected. Especially in IBD care, waiting can result in serious complications such as abscess or fistula formation with the subsequent involvement of healthy ‘target organs’, malnutrition with increased risk of anastomotic leakage and unplanned defunctioning ostomies. In a retrospective cohort study from the AMC, Amsterdam, The Netherlands, all complications that occurred during waiting for IBD surgery, between January 2014 and December 2015, were assessed. Of the 270 IBD patients scheduled for elective surgery, 159 patients had to undergo surgery for active disease. These patients had a median waiting time of 11 weeks. For another 44 patients without active disease (second stage surgeries like pouch formation or stoma referral), waiting timewas almost 17 weeks. From the analyses, it became clear that for 10% of patients, the waiting list was too long, and they were operated upon in a semior acute setting. In addition, 16% of these patients suffered from a physical complication during waiting (e.g. > 5% weight loss, fistula or abscess requiring radiological intervention, dehydration). Finally, in 43% of patients an adverse event was seen, defined as an extra (telephone) outpatient appointment, ER-visit, or temporary admittance to the gastroenterology or surgical ward. Complications and adverse events were significantly related to the length of the wait time. These results clearly demonstrate the risk of waiting. Apart from all the accompanying logistic problems, hospital and societal costs, it is medically unacceptable. For most patients on surgical lists, waiting feels like insult to injury, and it is about time that we all set rules. We should start incorporating waiting list problems in other quality IBD initiatives that are currently being employed, and registries should undoubtedly play a central role in this quality improvement.