The complications of jejunostomy tubes for patients receiving Duodopa: New challenges for neuroscience nurses

An 80 year old man with advanced Parkinson’s disease (PD) was admitted to the neuroscience unit with a worsening decline in mobility. Medical management was the commencement and titration of the levodopacarbidopa intestinal gel (LCIG) Duodopa ® via a naso-jejunal tube, which had been inserted under fluoroscopy in Interventional Radiology. Over a ten day trial period the patient responded well to the administration of the LCIG with much less periods of difficulty with movement (known as OFF times) although he did continue to experience periods of dyskinesia, some paranoid behaviours and notable episodes of ‘punding’ (repetitive nonpurposeful movements). Following these promising results from the LCIG infusion, the patient consented to proceed to the insertion of a direct jejunostomy for permanent transjejunal intestinal infusion by a upper gastrointestinal surgeon. On day 2 post insertion of the jejunostomy tube the patient complained of nausea and vomiting and overnight he was transferred to the intensive care unit (ICU) with a suspected bowel obstruction and an aspiration pneumonia.

Duodopa ® has been increasingly accepted as an effective treatment for troublesome motor fluctuations and dyskinesia for patients with advanced Parkinson’s Disease (Lang et al., 2016; Nyholm et al., 2008; Olanow et al., 2014).Oral administration of levodopa leads to variable plasma levels from erratic gastric emptying (Nyholm et al., 2008).The intraduodenal delivery of levodopa connected to a portable pump provides a relatively steady plasma level of levodopa (Chang et al. 2016).

The usual delivery of LCIG is via a percutaneous endoscopic gastrostomy/jejunostomy tube (PEG/J). This system uses a percutaneous gastrostomy tube with fine bore jejunal extension, so that the gel can be directly infused into the jejunum where absorption of the medication will be optimized (Tsui, 2014). For the patients the neurologists opted for the insertion of a direct jejunostomy tube, with the placement of the tube directly into the small intestine for the administration of the gel. This decision was based on the reported complications associated with the PEG/J delivery system (Kimber & Shoeman (2014). It also highlighted the notion that persistence in focusing on the clinical benefits of Duodopa has the potential to eclipse the challenges and complications of introducing a new jejunostomy tube for patients with an already debilitating disease (Bianco et al., 2012).

Within the studies on the benefits of Duodopa are reports of tube/stoma complications. Nyholm et al (2008) reports the most common complication for the PEG/J tube was dislocation of the tube from the small intestine to the stomach. Another two studies noted that the main safety issue of the LCIG related to the infusion system with technical problems associated with kinking and blocking of the tube (Senek & Nyholm, 2014; Zibetti et al., 2014). Zibetti et al (2014) reported one duodenal perforation out of 59 patients, while Kimber & Shoeman (2014) report two gastric perforations out of 17 patients which required laparotomy to repair. Recurrent minor problems were tube malfunction and dislocation secondary to punding (Chang et al., 2016). A constantly dislodged tube requires repeated re-siting of the jejunal tube (Foltynie et al., 2013), which exposes patients to a return to the endoscopy suite and the increased risks of hospitalization and general anaesthesia (Kimber & Schoeman, 2014).

Complications are also related to infection around the stoma, (van Laar, Nyholm, & Nyman, 2016) with reports of excessive granulation tissue, incision site erythema, abdominal pain, peritonitis and pneumoperitoneum (Fernandez et al., 2015; Zibetti et al., 2014). Zibetti et al (2014) noted infection tended to occur within one month of the PEG/J procedure and were successfully treated with antibiotic therapy, however device complications were the contributing reason for discontinuation of the infusion for a proportion of patients.

A study of 85 patients undergoing Duodopa infusion was conducted regarding nutritional status and weight loss in patients and determined that those without tube complications had significant weight gain over a 6 month period (Galletti et al., 2011).

Buried bumper syndrome (BBS) occurs when there is an overgrowth of the gastric mucosa over the inner bumper of the gastrostomy tube. Predisposing factors for BBS are tight fitting gastrostomy tubes, weight gain and no mobilization of the tube for the first month (Santos García et al., 2016). BBS was reported to have a higher incidence of occurrence in Freka PEG tubes (which is the preferred PEG/J tube for Duodopa), compared with a Corflo PG tube in one study (Dowman et al., 2015). Although another similar sized study claims a low incidence of BBS from Freka tubes published in October this year (Clarke & Lewis, 2016). Notably both studies examined the incidence of BBS in PEG/J tube that had been required for the purposes of enteral feeding and not for Duodopa administration.

Bezoars are composed of undigested food material that has been orally ingested (Altintoprak et al., 2012) and are classified based on the type of material they contain. Phytobezoars are described as occurring in patients who consume high amounts of fibrous and long fibre foods such as asparagus or spinach that may be difficult to digest (Altintoprak et al. 2012). In a case of a 21 year old male who had received LCIG for 6 months a blockage of his tubing was discovered to be jejunal tube being knotted in the stomach around a bezoar (Negreanu et al., 2010).

A 70 year old man presented with abrupt motor deterioration from tube obstruction from a bezoar. He was treated with a liquid diet and the use of Coca-Cola ® over four days until the bezoar was successfully dissolved (Stathis, Tzias, Argyris, Barla, & Maltezou, 2014).

In another case it was reported that a phytobezoar entrapped the tip of a 71 year old male patient’s jejunal tube and resulted in a jejunal wall perforation and fistulisation of 3 intestinal loops. Unfortunately the patient was reported to have died post-operatively following repair of the fistula (Vuolo et al., 2012). Given the non-motor symptoms of Parkinson’s disease that include poor gut motility and constipation (Fasano, Visanji, Liu, Lang, & Pfeiffer, 2015) it would seem that the risk of bezoars would be higher when coupled with reduced gastrointestinal motility caused by the PEG/J.

A long term PEG/J study determined that the procedural outcomes and adverse rates in patients treated using the PEG-J drug delivery system were acceptable, and that benefits of the therapy outweighed these complications (Epstein et al., 2016). Kimber & Shoeman (2104) felt that the high number of PEG/J complications was justification to introduce the use of the DEJ tube.

An abdominal CT scan reported that our 80 year old patient had a jejunal obstruction due to kinking at the level of the jejunostomyballoon; a distended stomach and fluid filled oesophagus, with consolidation in the lung bases secondary to aspiration. The balloon of the jejunal tube was deflated and a Salem sump nasogastric tube was inserted. Blood cultures returned an Enterobacter bacteraemia which was treated with IV antibiotics. He was given a beta-blocker for a new onset of atrial fibrillation secondary to his aspiration pneumonia and returned to the ward after 3 days in ICU. Once on the ward a new jejunostomy tube was inserted under fluoroscopy and sutured into place, following dislodgement of the first Jejunostomy without the ballon inflated for securement of the tube. He was restarted on the LCIG again with good motor results, less punding and no further hallucinations or paranoia. Two days after insertion of the second Jejunostomy tube, oozing around the tube necessitated review by the Stoma Clinical Nurse Consultant and the placement of an ileostomy bag. He was eventually discharged to a rehabilitation hospital and eighteen months later the patient reports fluctuations in the amount of ooze/leaks around the stoma site, which is temporarily alleviated with reductions in faecal loading through the use of regular aperients.

The nurses on the neurological ward are familiar with percutaneous endoscopic jejunostomy (PEG) tubes which are used routinely for enteral nutrition for patients at high risk of aspiration typically following stroke or traumatic brain injury. PEG/J feeding tubes are rarely used on our ward, but were reported to be developed for jejunal feeding to reduce gastroesophageal reflux occurring in PEG feeding. These tubes presented new challenges with PEG/J malfunction due to clogging and proximal migration of the extension tube back into the stomach (Panagiotakis, DiSario, Hilden, Ogara, & Fang, 2008), which was also noted in the studies for Duodopa. The same authors studied the benefit of a direct percutaneous endoscopic jejunostomy tube (DPEJ) to PEG/J and determined in a retrospective study of 75 patients a decrease in the overall incidence of aspiration pneumonia.

A search of the hospital’s protocol on PEG and jejunostomy tube returned guidelines for the role in enteral nutrition only with limited information for the care of a direct Jejunostomy for the sole purpose of medication administration. A search on CINAHL to compare rates of complications between DEJ to PEG/J retrieved only one retrospective study of 560 patients where the tubes were used for the purposes of enteral feeding indicated in patients with GIT / Head and Neck cancers, Stroke and other neurologic conditions which were not specifically identified (Ao, Sebastianski, Selvarajah, & Gramlich, 2015). Ao et al. (2015) concluded that there was a higher risk of tube related complications, particularly the requirement of tube replacement in the patients with the DEJ tubes (48.4%) than that of the PEG group (21.5%). To date the only other study which directly compares the two devices is a small study of 17 patients for Duodopa ® infusion where the authors advocated DEJ as a feasible alternative to the PEG/J tubes. This study reported a lower incidence in tube malfunction when comparing 8 patients undergoing PEG/J to 9 patients who received DEJ devices (Kimber & Schoeman, 2014).

The administration of the LCIG has provided patients with advanced Parkinson’s disease with great benefits in motor fluctuations and dyskinesia. The delivery of the intestinal gel requires an invasive PEG/J tube which brings a new set of challenges for these patients and the nurses caring for them. There is a lack of compelling evidence to support the introduction of the direct Jejunostomy tube having greater benefits, as opposed to the PEG/J. Further future studies are warranted not only to compare the safety and the rates of complications between the two devices, but also to increase knowledge and develop sound protocols for patients/families and nursing staff when using the direct Jejunostomy device to reduce complications and adverse outcomes.