Pediatric Liver Transplant Exception Request Narratives – How Do We Justify Requests?
1Pediatrics, University of California-San Francisco, San Francisco, CA
2Surgery, University of California-San Francisco, San Francisco, CA
3School of Medicine, University of California-San Francisco, San Francisco, CA.
Meeting: 2016 American Transplant Congress
Abstract number: D196
Keywords: Allocation, Pediatric
Session Information
Session Name: Poster Session D: Pediatric Liver Transplantation
Session Type: Poster Session
Date: Tuesday, June 14, 2016
Session Time: 6:00pm-7:00pm
Presentation Time: 6:00pm-7:00pm
Location: Halls C&D
Purpose: Over 50% of pediatric liver transplant (LT) candidates receive exceptions to increase PELD/MELD; more than [frac12] are non-standard exception requests (NSER) based on narrative justifications. This is the first study of UNOS NSER narratives in pediatric LT.
Methods: UNOS STAR and NSER narrative data 2009-2014 for pediatric LT candidates, 0-18 at listing, was coded by 2 authors and analyzed with content analysis, chi-square tests, logistic regression.
Results: 1381 NSER narratives on 1216 waitlist candidates (1137 approvals, 244 denials). 76% approved on first NSER, 7% on later NSER, 7% never approved. Biliary atresia associated with approval, older age with denial.(Table 1) Common justifications associated with approval: disease trajectory, risk of death, failure to thrive, biliary complications, pruritus. Justifications associated with denial: encephalopathy, impaired quality of life, SE outside criteria.
| % of NSER (n=1381) | Odds of NSER Denial | |||
| OR | 95%CI | p | ||
| Associated with approval | ||||
|
Biliary atresia (vs. any other diagnosis) |
44 | 0.4 | 0.3-0.6 | <0.001 |
| Any complication of liver disease | 84 | 0.5 | 0.4-0.7 | <0.001 |
| Disease trajectory | 65 | 0.6 | 0.5-0.9 | 0.002 |
| Risk of waitlist death | 38 | 0.7 | 0.5-0.9 | 0.008 |
| Failure to thrive (FTT) | 45 | 0.5 | 0.3-0.6 | <0.001 |
| -Failure to thrive despite NG/GT, TPN | 27 | 0.4 | 0.3-0.6 | <0.001 |
| Biliary complications | 19 | 0.4 | 0.3-0.6 | <0.001 |
| Pruritis | 12 | 0.6 | 0.3-0.9 | 0.02 |
| Associated with denial | ||||
| 2-11 years at listing (vs. ≤2) | 28 | 1.6 | 1.1-2.4 | 0.01 |
| ≥12 years at listing (vs. ≤2) | 25 | 5.5 | 3.9-7.7 | <0.001 |
| Encephalopathy | 11 | 1.8 | 1.2-2.7 | 0.004 |
| Impaired quality of life | 10 | 1.7 | 1.1-2.6 | 0.01 |
| Standard exception, outside criteria | 7 | 1.9 | 1.2-3.1 | 0.01 |
| ≥10% of NSER, not associated with approval/denial | ||||
| Ascites, other edema | 36 | 0.9 | 0.7-1.3 | 0.7 |
| Liver/biliary infection | 35 | 0.8 | 0.6-1.1 | 0.1 |
| Repeat/extended hospital admission | 25 | 0.9 | 0.6-1.1 | 0.3 |
| Varices | 26 | 1.3 | 0.9-1.8 | 0.06 |
| Bleeding from varices | 19 | 1.1 | 0.8-1.6 | 0.5 |
| Tumor | 10 | 1.4 | 0.9-2.2 | 0.1 |
| Post-transplant complication | 9 | 0.8 | 0.5-1.3 | 0.3 |
Conclusion: There are common justifications in NSER. These narratives are a key resource to inform revisions of the PELD/MELD system.
CITATION INFORMATION: Braun H, Rhee S, Dodge J, Roberts J, Perito E. Pediatric Liver Transplant Exception Request Narratives – How Do We Justify Requests? Am J Transplant. 2016;16 (suppl 3).
To cite this abstract in AMA style:
Braun H, Rhee S, Dodge J, Roberts J, Perito E. Pediatric Liver Transplant Exception Request Narratives – How Do We Justify Requests? [abstract]. Am J Transplant. 2016; 16 (suppl 3). https://atcmeetingabstracts.com/abstract/pediatric-liver-transplant-exception-request-narratives-how-do-we-justify-requests/. Accessed May 9, 2025.« Back to 2016 American Transplant Congress