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National Survey of Pediatric Intestinal Rehabilitation Programs in the United States
Christine J Park1, Matthew P Shaughnessy1, Lucy Zhang1
1Department of Surgery, Division of Pediatric Surgery at Yale University, New Haven, Connecticut, 06510, USA.
Insights
Pediatric intestinal rehabilitation (PIR) programs are vital for children with intestinal failure. Key components include gastroenterology, surgery, nutrition, nursing, and social work services for successful patient outcomes.
Area of Science:
- Pediatric gastroenterology
- Clinical program development
Background:
- Pediatric intestinal rehabilitation (PIR) programs improve outcomes for children with intestinal failure.
- National PIR programs exhibit significant heterogeneity in structure and services.
- Characterizing PIR program components is essential for program establishment and expansion.
Purpose of the Study:
- To identify and describe the core components of existing Pediatric Intestinal Rehabilitation programs.
- To provide a benchmark for developing or enhancing PIR programs.
Main Methods:
- A 14-item questionnaire was distributed to Pediatric Intestinal Rehabilitation programs identified through the Children's Hospital Association and US News and World Report.
- Programs were categorized by size (small/large) and establishment (new/established).
- Data were collected using Qualtrics Online Survey Software.
Main Results:
- A response rate of 86% (61 of 71 programs) was achieved.
- Most programs integrated gastroenterology, surgery, nutrition, nursing, and social work services.
- Large, established programs were more likely to be referral centers, have greater multidisciplinary participation, dedicated staff time, frequent meetings, and diverse funding.
Conclusions:
- Essential components of Pediatric Intestinal Rehabilitation programs include gastroenterology, surgery, and nutrition, complemented by robust nursing and social work support.
- These findings document current PIR program structures.
- Further research is needed to correlate program structure with patient outcomes.
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.
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