Introduction

The Percutaneous Endoscopic Gastrostomy (PEG) tube is used to provide enteral nutrition when oral intake is not adequate.
Regular follow-up of PEG patients is essential to detect complications and clarify doubts. A partnership protocol was developed with ACES Lisboa Central (ACESLC) and Loures/Odivelas (ACESLO) to improve continuity of care.

Results & Findings

We analyzed data from PEG patients followed between 2023 and 2024. Inclusion criteria for referral to ACES included:
• Clinical stabilization;
• Absence of PEG-related complications requiring hospital admission;
• Willingness and ability of the patient/caregiver to participate actively in care.
Monitoring of the protocol was based on quarterly evaluation of five performance indicators:
1st: Percentage of patients referred to ACES, out of the total seen in PEG review consultations;
2nd: Percentage of referred patients who returned to hospital before the expected date due to complications;
3rd: Percentage of cases in which complete referral documentation, as per protocol, was sent to ACES;
4th: Percentage of cases with confirmation that ACES sent back all required clinical data;
5th: Percentage of compliance with scheduled PEG follow-up appointments at ACESLO.

Summary & Discussion

The 1st indicator shows low referral rates in both years, mainly due to out-of-area institutionalization, clinical worsening, or death.
The 2nd indicator indicates fewer unplanned hospital readmissions among referred patients; when they occurred, complications were the cause.
Results show fewer complications and emergency visits, reflecting the benefit of close ACES collaboration.
The 3rd indicator reflects 100% compliance in sending referral documentation.
The 4th indicator showed gaps in home visit records in 2023, improved in 2024 through better coordination.
One challenge was the mismatch between designated ACES nurses and those conducting home visits, which required articulation with family health teams (USF).
The 5th indicator confirms overall adherence to scheduled PEG reviews.

Conclusion

The protocol streamlined follow-up for PEG patients.
In 2024, a previous limitation was overcome, allowing referrals of institutionalized patients within the protocol’s coverage.
As a pioneering project, we aim to share these findings to support protocol expansion to other units.

References

Kurion, M., Andrews, R., Tattersall, R., McAlindon, M., Wong, E., Johnston, A., Hoeroldt, B., Dear, K. & Sanders, D. (2017). Gastrostomies preserve but do not increase quality of life for patients and caregivers. Clinical Gastroenterology and Hepatology. 15, 1047-1054.
Lee, C.,Kang, H., Lim, Y., Lee, J., Koh, M., Lee, J., Yang, C. & Kim, J. (2013). Comparison of complications between endoscopic and percutaneous replacement of percutaneous endoscopic gastrostomy tubes. JKoren Medical Sciences. 28, 1781-1787.
Lucendo, A. J. & Friginal-Ruiz, A. B. (2014). Percutaneous endoscopic gastrostomy: An update on its indications, management, complications, and care. Revista Española de Enfermedades Digestivas. 106(8), 529-539.

Introduction

Inflammatory bowel diseases (IBD), encompassing ulcerative colitis (UC) and Crohn’s disease (CD), are associated with increased risk of primary sclerosing cholangitis (PSC). However, population-level data for optimal screening strategies in incident IBD are lacking.

Aims & Methods

We aimed to determine the occurrence and predictors of PSC in patients with newly diagnosed IBD. Since May 1^st, 2021, all adult and pediatric patients with incident IBD within a catchment area encompassing 20% of Denmark were enrolled in the prospective population-based Copenhagen IBD Inception Cohort.¹ All adult patients were invited for MRCP and blood tests (albumin, alanine aminotransferase (ALT), alkaline phosphatase (ALP), bilirubin, and INR) at IBD diagnosis. PSC-like lesions on MRCPs were evaluated by two experienced radiologists. Multivariate Cox proportional hazard analyses adjusting for age, gender, smoking, and disease phenotype were performed (adjusted HR, aHR, 95% confidence interval).

Results

Between May 2021 and May 2023, 527 patients (UC: 326; CD: 201) were included, with 242 (74.2%) and 147 (73.1%) undergoing MRCP, respectively, within a median of 2.4 months (interquartile range (IQR) 1.3-4.9) of IBD diagnosis. No clinical differences were observed between patients who underwent MRCP and those who did not.
PSC-like lesions on MRCP were detected in 33 patients (8.5%), including 17 (7.0%) and 16 (10.9%) with UC and CD, respectively. Of those, 19 patients (4.9%), including 11 (4.5%) with UC and 8 (5.4%) with CD, had definite PSC. No difference was observed in the occurrence of PSC (p=0.37) or PSC-like lesions (p=0.08) in UC vs. CD, nor according to the phenotype of CD; however, PSC lesions in both intra- and extrahepatic bile ducts were more common in UC than in CD (46.2% vs. 6.3%, p=0.02). In addition, a larger proportion with PSC had extensive UC (62.5% vs. 27.1%, p=0.04) or were males (87.5% vs. 44.9%, p=0.03) compared to those without PSC.
Abnormal hepatobiliary biochemistry was found in 34 (14.0%) and 39 (26.5%, p<0.01) patients with UC and CD, respectively, with a higher prevalence observed in patients with definite PSC (9/19 (47.4%)) or PSC-like lesions (8/14 (57.1%)) compared to those with normal MRCP (56/356 (15.7%), p<0.01). Receiver operating characteristic analysis identified ALT≥25 U/L and ALP≥117 U/L to predict PSC best (accuracy and sensitivity: 0.65, specificity: 0.63, positive predictive value (PV): 0.96, and negative PV: 0.09).
During a follow-up of 2.1 years (IQR 1.6-2.6), PSC and PSC-like lesions were both independently associated with increased risk of intestinal resections (aHR 5.69, 1.13-28.54), biologics (aHR 2.00, 1.04-3.86), hospitalization (aHR 2.70, 1.02-7.12), and systemic steroids (aHR 2.45, 1.02-5.89) in CD but not in UC. Abnormal hepatobiliary biochemistry was associated with hospitalization (aHR 2.11, 1.12-4.00) and flare-up of CD (aHR 1.13, 1.02-1.96) as well as biologics in UC (aHR 2.49, 1.15-5.38). None of the PSC cases died, developed cancers, varices, or required liver transplantation within the follow-up period.

Conclusion

In this prospective population-based cohort, we found a considerable proportion (8.5%) to have undetected PSC or PSC-like lesions, despite normal hepatobiliary biochemistry in half of these cases. Notably, both definite PSC, PSC-like lesions, and abnormal hepatobiliary biochemistry had a negative impact on IBD prognosis. The results underscore the importance of systematic screening to mitigate the risk of overlooking PSC, thereby improving the management and outcomes of IBD.

References

1. Attauabi M, Madsen GR, Bendtsen F, et al. Influence of Genetics, Immunity and the Microbiome on the Prognosis of Inflammatory Bowel Disease (IBD Prognosis Study): the protocol for a Copenhagen IBD Inception Cohort Study. BMJ Open. 2022;12(6):e055779. doi:10.1136/bmjopen-2021-055779

Disclosure

Mohamed Attauabi: None
Gorm Roager Madsen: Personal fees from Tillotts
Jakob M Møller: None
Yousef Jesper Wirenfeldt Nielsen: None
Annette Bøjer Jensen: None
Frank Krieger Jensen: None
Hartwig Roman Siebner: has received honoraria as speaker from Sanofi Genzyme, Denmark and Novartis, Denmark, as consultant from Sanofi Genzyme, Denmark, Lophora, Denmark, and Lundbeck AS, Denmark, and as editor-in-chief (Neuroimage Clinical) and senior editor (NeuroImage) from Elsevier Publishers, Amsterdam, The Netherlands. He has received royalties as book editor from Springer Publishers, Stuttgart, Germany and from Gyldendal Publishers, Copenhagen, Denmark.
Eva Fallentin: None
Flemming Bendtsen: Tillotts, Ferring
Jakob Benedict Seidelin: has received research grants from Takeda, Janssen, the Danish Research Council, and the Capital Region Denmark, and is national coordinator of studies from AbbVie, Arena Pharmaceuticals, Ely Lilly, and Boehringer Ingelheim.
Johan Burisch: reports grants and personal fees from AbbVie, grants and personal fees from Janssen-Cilag, personal fees from Celgene, grants and personal fees from MSD, personal fees from Pfizer, grants and personal fees from Takeda, grants and personal fees from Tillots Pharma, personal fees from Samsung Bioepis, grants and personal fees from Bristol Myers Squibb, grants from Novo Nordisk, personal fees from Pharmacosmos, personal fees from Ferring, personal fees from Galapagos, outside the submitted work.