A foundation resource grounded in lived experience and clinical reality
Adults living with intestinal failure and short bowel syndrome have already seen meaningful progress: better lipid emulsions, GLP-2 analogs, refined surgical techniques, and growing recognition that long-term home parenteral nutrition can support full lives.
The next decade will bring further change — some incremental, some potentially transformative. This chapter outlines what is coming and what high-quality adult IF care systems could look like.
Teduglutide and next-generation GLP-2 candidates continue to evolve — longer-acting formulations, alternative dosing schedules, and combination strategies aimed at greater reductions in HPN volume or days, improved tolerability, and broader eligibility. Other agents targeting adaptation, motility, barrier function, and the microbiome are in earlier stages of development.
Better intravenous lipid emulsions and tailored amino-acid or micronutrient formulations aim to reduce long-term complications such as liver disease and bone loss. Watch for trial eligibility that specifically includes long-term HPN users — not only newly diagnosed or pediatric patients.
Autologous reconstructive procedures (including serial transverse enteroplasty and other lengthening or tapering techniques) continue to be refined for selected adults with suitable anatomy. Improved perioperative support and multidisciplinary planning have lowered complication rates in experienced centers. Decisions remain highly individualized.
Research into intestinal stem cells, organoids, scaffolds, and bioengineered intestine is progressing in preclinical and early clinical stages. The long-term goal is functional intestinal tissue that could reduce or eliminate the need for HPN or transplant. Timelines for widespread adult application remain uncertain.
Outcomes for intestinal and multivisceral transplantation have improved with better immunosuppression, infection management, and center experience. For carefully selected adults with irreversible IF and life-threatening complications, transplant can offer HPN independence. Challenges remain: lifelong immunosuppression, rejection risk, and limited organ availability. Early discussion with high-volume centers is valuable.
Traditional clinical endpoints remain important, but they do not fully capture what matters to adults: energy for work and family, sleep quality, catheter-related anxiety, body image, sexual health, ability to travel, and the cumulative burden of care.
When adults consistently complete validated PROMs specific to IF and SBS, the data strengthen the case for therapies that improve daily life — even if they produce only modest changes in infusion volume.
Drawn from registries, electronic health records, infusion pharmacy data, and patient-powered research. Trials often enroll highly selected patients under ideal conditions. Real-world data show how treatments perform across diverse adult populations, over longer time frames, and amid insurance barriers and comorbidities. Participating in high-quality registries is one of the most direct ways adults can shape future standards of care.
An ideal adult IF care system would not eliminate medical complexity — but it would systematically reduce unnecessary burden and variation in outcomes.
Core features:This vision is ambitious but grounded. Elements of it already exist in a small number of high-performing centers and patient-organization partnerships. Expanding them requires sustained advocacy, research investment, payment reform, and the continued willingness of adults with IF to share both their data and their expertise.
Innovation will not arrive evenly or overnight. What remains constant is the value of informed, engaged adult patients who understand the science, contribute to the evidence, and insist that systems measure success by the lives people are actually able to lead.