Karin A. Wasmann
© Karin A. Wasmann
While striving to meet the quality standards for oncological care, hospitals prioritise oncological procedures more frequently, resulting in longer waiting times for surgery for benign diseases such as Inflammatory Bowel Disease (IBD). Currently in the Netherlands, oncological treatment should be started within six weeks after diagnosis and this is reinforced by the Dutch Health Care Inspectorate, insurance companies and patient organisations . The situation in other European countries is similar. Additionally, since the introduction of national bowel cancer screening programmes, the demand for oncological surgical resections has risen worldwide [2–5]. The subsequent longer waiting time for benign diseases is not only inconvenient for patients, but in the case of IBD may lead to severe complications.
IBD patients requiring surgery are mainly therapy refractory and have longstanding disease as they have failed a series of immunosuppressive drugs, weakening the patient physically and mentally. Meanwhile, as IBD is a progressive inflammatory disease, complications such as strictures and fistulas with or without abscess formation develop in 50% of patients during their disease course, resulting in worse outcomes after surgery [6–9]. For example, decreased oral intake due to a stenosis results in weight loss and poor pre-operative condition. A pre-operative abscess increases the risk for open surgery, anastomotic leakage and (temporary) stoma [10, 11]. Fistulas may result in more extensive surgery of otherwise unaffected healthy tissue.
These complicated cases should preferably be operated on in specialised high-volume centres using a laparoscopic approach as this improves short- and long-term postoperative outcomes [12–15]. Considering the complexity of IBD management, subspecialised gastroenterologists and surgeons should ideally provide IBD care within multidisciplinary and specialised IBD units, optimising the integration of medical management and surgery. However, especially in tertiary referral centres, where the most complex cases are treated, increasing waiting times have become problematic .
In the Amsterdam UMC, location AMC, the waiting list problems became increasingly apparent. Ultimately, it became painfully clear that something different needed to be done when a Crohn’s patient on the waiting list for completion proctectomy required admission to the intensive care unit with abdominal sepsis following a rectal stump perforation as a result of a progressing stenosis.
We analysed the waiting time for the Amsterdam UMC, location AMC, between 2013 and 2015. This time period spans the waiting times before and after the implementation of the national bowel cancer screening programme in the Netherlands. The mean waiting time for elective operations was ten weeks (SD 8) for IBD patients with active disease (n=173) and 15 weeks (SD 16) for those with inactive disease (n=97, e.g. pouch surgery after subtotal colectomy, stoma reversal). These waiting times are remarkably longer than the mean waiting time for colorectal cancer patients in the Amsterdam UMC, location AMC, which remained stable at five weeks during the study period.
While patients with active disease were on the waiting list, one out of eight had to undergo surgery in an acute or semi-acute setting. In addition, 19% had disease complications (e.g. >5% weight loss, fistula or abscess formation requiring radiological intervention) and 44% needed additional health care [i.e. (telephone) outpatient clinic appointment, visit to the emergency department or hospital admission]. Fewer pre- and postoperative complications were observed in IBD patients electively operated on within six weeks than in patients who had to wait longer (Wasmann et al., accepted for publication in JCC, July 30, 2019).
We contend that for a large number of IBD patients the current waiting time is unacceptable, not only due to the medically unjustifiable increased complication rate but also because of the general dissatisfaction, logistical difficulties and hospital costs associated with the extra interventions and hospital visits . In addition, for the ‘non-ill’ patient group, a mean waiting time of 15 weeks for a stoma reversal should be avoided . The social lives of these young patients are often on hold during the waiting time . Moreover, in this era in which prehabilitation and pre-operative optimisation are promoted [20, 21], complications due to a waiting list are not tolerable.
The IBD centre of the Amsterdam UMC, location AMC, has made an alliance with a non-academic teaching hospital nearby. Currently, one academic and one peripheral IBD surgeon run a joint outpatient clinic. Patients in good condition requiring standard care (e.g. ileocaecal resection for terminal ileitis) are being operated on in the allied hospital with a considerably shorter waiting time. However, waiting times have not only lengthened for the Amsterdam UMC, location AMC. Interviews conducted across 48 Dutch hospitals in 2014 revealed the average waiting time for IBD surgery in peripheral hospitals to be 3.5 weeks compared to nine weeks in university hospitals . This local initiative will not be a structural solution to the problem, given its magnitude.
Given to the current trend in respect of auditing, quality checks and volume norms, there are many incentives for hospitals to specialise. Nevertheless, the incentive to do so in the direction of oncology care seems greater than for benign disease, reflecting the greater support and emotion surrounding colorectal cancer in our society. However, the appropriateness of prioritising oncology patients at the expense of timely care for IBD patients should be questioned.
Physicians and surgeons have an obligation to provide optimal care for every patient. In oncology, quality criteria like regular multidisciplinary team meetings, centralisation of care and health care regulatory bodies setting the norm for time to treatment are well established . For IBD centres, however, quality criteria are heterogeneous and suboptimal .
Public awareness for IBD patients must be raised to a similar level as for oncology patients to fuel the development of norms for maximum waiting times for surgery while enforcing the volume norms.