National Survey of Pediatric Intestinal Rehabilitation Programs in the United States

Abstract

Background Pediatric intestinal rehabilitation (PIR) programs are associated with improved outcomes in children with intestinal failure but remain heterogeneous nationally. This study characterizes PIR program components to aid those seeking to establish or expand a program. Methods Members of the Children's Hospital Association reporting a PIR program to the US News and World Report completed a 14‐item questionnaire using the Qualtrics Online Survey Software. Programs were categorized as small or large (≤50 vs >50 patients) and new or established (≤10 vs >10 years). Results Seventy‐one programs were identified and 61 surveys were returned for a response rate of 86%. Majority of programs had gastroenterology, surgery, nutrition, nursing, and social work services involved. Large programs (n = 34; 59%) were more likely to serve as referral centers; have greater participation by nursing, social work, and primary care; have more dedicated time by gastroenterology, surgery, nursing, nutrition, and social work; have more frequent meetings; and have various funding sources (P < .05). Conclusion Critical components of a PIR program include gastroenterology, surgery, and nutrition services with strong nursing and social work support. These data document the components of modern PIR programs, though further studies on the relationship between program structure and patient outcomes are warranted.

Complementary food introduction practices in infants with intestinal failure

“…The sample size was small and the survey response rate was very low (8%) when compared with the total number of RDNs in the ASPEN PIF Section. However, a recent publication stated that 71 members of the US Children's Hospital Association reported that they have a pediatric IR center 56 . Given that the survey responses were requested from Section RDNs working in an IR center, the response rate was likely closer to 36%.…”

“…However, a recent publication stated that 71 members of the US Children's Hospital Association reported that they have a pediatric IR center. 56 Given that the survey responses were requested from Section RDNs working in an IR center, the response rate was likely closer to 36%. Close-ended questions may not have captured all data related to the introduction of CF to infants with IF.…”

Pediatric intestinal rehabilitation

“…The management of PIF involves coordinated care for enteral and parenteral nutrition, management of complications, surgical lengthening procedures, and intestinal transplantation. These programs lead to more efficient diagnosis and treatment, better communication among care teams and families, and improved follow-up care, ultimately improving the QOL of patients and their families [6]. IRPs aim to prevent and treat complications such as catheter-related bloodstream infections (CRBSI), venous thromboembolism (VTE), and intestinal failure-associated liver disease (IFALD) [7].…”

“…On the basis of the results of the national survey of pediatric IRPs in the United States, the majority of programs involve gastroenterology, surgery, nutrition, nursing, and social work services, with larger programs being more likely to serve as referral centers [6]. Comprehensive care through pediatric IRPs has resulted in fewer septic complications, fewer complications related to central venous catheters, a reduced incidence of IFALD, improved nutritional parameters, superior rates of enteral autonomy without the need for intestinal transplantation, improved overall and transplant-free survival, and better transplant outcomes [6]. In addition, IRP has been associated with cost savings [8].…”

Current Surgical Concepts and Indications in the Management of the Short Bowel State: A Call for the Use of Multidisciplinary Intestinal Rehabilitation Programs

“…Because of the multi-systemic nature and complexity of the disease, IRP is founded on a multidisciplinary team, including paediatric surgeons, gastroenterologists, nutritionists, logopedists and specialised nurses [2,3,13,14]. As is widely known, early entry into an IRP at one of the highly specialized centres is crucial for survival for SBS patients [12,13,[15][16][17][18].…”