Intestinal Failure in Adults

IF is defined as “the reduction of gut length or function below the minimum necessary for the absorption of macronutrients and/or water and electrolytes¹. Chronic intestinal failure (CIF) often demands lifelong intravenous supplementation with parenteral nutrition and/or fluids to maintain health, and patients with CIF due to benign disease have a high probability of long-term survival on Home Parenteral Support (HPS). Weaning from HPS after 1-2 years of starting may occur in 20-50% of the patients, depending on the characteristics of the CIF.

Nutrition support for short bowel syndrome

The term short bowel syndrome is often used in patients who anatomically have less than 200 cm of remnant small bowel due to, i.e., bowel resections. After resections or the creation of a small bowel stoma, the clinical problem is often short bowel syndrome and, thus, severe malabsorption. Nutrition support (PS) is usually required, partly to restore or reestablish the general condition and partly because bowel resection and often the creation of a jejunostomy in the postoperative phase leads to severe malabsorption. The length of the functioning small intestine and whether the colon is in extension with it is, in general, decisive for whether the patient can cope with oral/enteral nutrition alone in the long term. As a rule of thumb, patients with less than 100 cm of jejunum presented as a stoma or less than 50 cm of jejunum in continuity with the colon need PS of fluids, electrolytes, and/or nutrition.

However, the function of the intestine depends on more factors than just anatomy, so the functional term “intestinal failure” is the overall term used for conditions requiring PS.

Underlying disease, sequelae, and comorbidities

Denmark is estimated to be among those countries with the highest incidences of CIF in the world. However, numbers seem to have plateaued in recent years. The most frequent underlying benign diseases leading to IF are patients with Crohn’s disease, mesenteric ischemia, surgical complications, gastrointestinal motility disorders, chronic intestinal pseudo-obstruction, and radiation enteritis^2-4. However, in recent years, HPS-specialist centers increasingly serve or assist the care of patients with IF due to cancer or complications³.

Most IF patients are at risk of sequelae to their underlying disease and to their current condition and treatment. Potentially life-threatening catheter complications such as severe infections and thrombosis, as well as liver failure and osteoporosis, are pervasive threats to patients’ lives and their mobility⁵. Furthermore, daily disturbances such as fatigue, social isolation, vomiting, anorexia, bacterial overgrowth in the small intestine, and diarrhea are concerns, thus demanding a continued qualified follow-up. Even though several patients with IF can travel, work, and live an almost normal life, these threats and impairments decrease QoL, which are influenced by the number of infusions per week, as well as the presence of ostomies and degree of physical function and abilities^6-12. Healthcare professionals, however, seem to perceive that their patients would rate improved QoL as the most important treatment goal above other goals, such as a pain-free life, avoidance of complications, and amount of hospital visits¹³. Therefore, a focus on QOL-improving HPS management and healthcare interventions should be included as the primary goal of treatment.

Financial issues for patients and society

In Denmark, as in the other Nordic countries, the public healthcare system ensures patients with IF have the same rights for life-saving treatment as patients with other organ failures. This includes the financial compensation for direct costs of healthcare expenditures related to the diagnosis, hospitalizations and, treatment including parenteral support and all IV supplementation IV-supplementation,­ medical follow-up, transportation, equipment, and supplies. Furthermore, community healthcare expenditures such as home care nursing, other home care assistance, and assistive devices are free of charge for the IF patient. These are better conditions than in many other countries¹⁴. Nonetheless, many IF patients are partly or fully prevented from being able to hold a full-time job and, therefore, are dependent on sick pay or early retirement, which limits their income^2,6,15.

In a recent survey of 119 IF centers worldwide, many had experienced patient referral delays, mostly related to a delayed decision to refer to a specialist center.

What is a specialist center, and why is it needed?

Patients with CIF are complex with their many competing conditions and psychological and social burdens due to many changes in their life situation, especially within the first year after the onset of the IF condition. In general, hospital managements often encourage a shorter stay for all patients. However, an expedited discharge may contribute to serious complications for this group of patients. Early recognition of the need for IF-specialty care is advised, as most specialist care units have access to well-trained specialized HPS nurses who can care for and train the patients towards self-efficacy, as well as train peers and home care nurses, stoma nurses specialized in very complex bandaging of stomas and fistulas, specialized PS-pharmacists, laboratory technicians, social advisors, psychologists, specialized physicians, anesthesiologists or surgeons trained in placing tunneled catheters, radiologists, easy access to specialized surgeons and pain clinic. In a recent survey of 119 IF centers worldwide, many had experienced patient referral delays, mostly related to a delayed decision to refer to a specialist center. It is understood by specialists that greater attention to symptoms and faster transfer to specialist IF departments will ease the burden of the condition both on patients and on society¹³.

Conclusion

CIF is a rare organ failure where parenteral support is required. Due to pioneering efforts over the last 50 years, Denmark has the world’s highest prevalence of IF patients. By centralizing care, the Danish healthcare system has adapted to provide quality care to these patients comparable to patients with other organ failures. Patients suffering from CIF suffer from complex conditions and need various specialist care for their burdens when hospitalized and also from the community and follow-up care. More awareness of this complex condition, early recognition, and priority to specialist care with regard to all required professionals seems to ease the long-term burden on patients as well as society.

The Danish Intestinal Failure Group Takes Stock of Patients with Chronic Intestinal Failure and Treatment

april 2024 / Mette Holst / Louise Bangsgaard Antonsen / Henrik Højgaard Rasmussen / Palle Bekker Jeppesen

IBD

Patients’ Experience of Home Parenteral Support Care in Denmark – A Balance Between Sufficient Support and Independence

april 2024 / Mette Holst / Louise Bangsgaard Antonsen / Henrik Højgaard Rasmussen / Palle Bekker Jeppesen

IBD