Introduction

Ileostomies, whether temporary or permanent, may be required in patients with Crohn’s Disease (CD) due to medically refractory disease or penetrating complications. However, standardized clinical care processes for patients with CD and a permanent ileostomy (PI) are lacking. The EndoTrial consortium aims to address this gap by developing pathways for care. This umbrella review sought to consolidate existing knowledge by identifying, evaluating, and synthesizing findings from published systematic reviews on various aspects of clinical care for ileostomy patients, including managing high stoma output, disease recurrence, peristomal skin care, stoma pouching system and adhesives, behavioral interventions, mental health, and dietary management.

Aims & Methods

Following Cochrane guidelines for "Overviews of Reviews" and adhering to Preferred Reporting Items for Overviews of Reviews (PRIOR), we systematically searched major databases for relevant systematic reviews (SRs) or scoping reviews (ScR) published in English until January 5, 2024. Two independent reviewers screened articles, extracted data, and assessed quality using AMSTAR 2. Data synthesis was conducted narratively.

Results

Of 1349 screened papers, we selected 24 reviews, including 22 SRs (8 with meta-analysis) and 2 ScRs. None exclusively focused on PI. Furthermore, nine reviews did not mention patients with inflammatory bowel disease (IBD), and only two reviews included patients with high-output ileostomy, highlighting a large evidence gap. The identified reviews covered eleven types of interventions, including ostomy care pathways, clinical management of high-output stoma, peristomal skin care, dietary management, nurse specialists, post-discharge continuous care, telemedicine, patient education, self-management interventions, management of parastomal varices, and chewing gum for postoperative ileus. Notably, none of the reviews exclusively examined stoma pouching system and adhesives, behavioral interventions, or mental health.

Conclusion

Evidence for best practice interventions to help improve the quality of life for patients living with an ileostomy is limited and heterogeneous. Notably, systematic reviews have largely overlooked interventions for patients with PI. There is an urgent need for standardized clinical care processes and pathways tailored to the unique needs of this patient population, which is a key workstream of the EndoTrial Consortium

Disclosure

VS, YY, MH, JAVK have none to disclose.
SKY is an employee of Alimentiv Inc.
SD has received research grants from Pfizer.
NN has received speaking/advisor fees from Janssen, Abbvie, Takeda, Pfizer, Merck, Sandoz, Fresenius Kabi, Innomar, Iterative Scopes, Bristol Myers Squibb, Viatris, and Ferring.
CM has received consulting fees from AbbVie, Alimentiv, Amgen, AVIR Pharma Inc, BioJAMP, Bristol Myers Squibb, Celltrion, Ferring, Fresenius Kabi, Janssen, McKesson, Mylan, Takeda, Pendopharm, Pfizer, Roche, Sanofi; speaker's fees from AbbVie, Amgen, AVIR Pharma Inc, Alimentiv, Bristol Myers Squibb, Ferring, Fresenius Kabi, Janssen, Takeda, Pendopharm, and Pfizer; royalties from Springer Publishing; research support from Ferring, Takeda, Pfizer.
FR is consultant to Agomab. Allergan, AbbVie, Boehringer Ingelheim, Celgene, Cowen, Falk Pharma, Genentech, Gilead, Gossamer, Guidepoint, Helmsley, Index Pharma, Jannsen, Koutif, Mestag, Metacrine, Morphic, Origo, Pfizer, Pliant, Prometheus, Receptos, RedX, Roche, Samsung, Takeda, Techlab, Theravance, Thetis, UCB and received funding from the National Institute of Health, Helmsley Charitable Trust, Crohn’s and Colitis Foundation, Rainin Foundation, UCB, Boehringer-Ingelheim, Pliant, Morphic, BMS, 89Bio.
VJ has received consultancy/advisory board fees from AbbVie, Alimentiv Inc., Arena pharmaceuticals, Asahi Kasei Pharma, Asieris, Astra Zeneca, Bristol Myers Squibb, Celltrion, Eli Lilly, Ferring, Flagship Pioneering, Fresenius Kabi, Galapagos, GlaxoSmithKline, Genentech, Gilead, Janssen, Merck, Mylan, Pandion, Pendopharm, Pfizer, Protagonist, Reistone Biopharma, Roche, Sandoz, Second Genome, Takeda, Teva, Topivert, Ventyx, and Vividion; and speaker’s fees from, Abbvie, Ferring, Galapagos, Janssen Pfizer Shire, Takeda, and Fresenius Kabi.