Abstract
Background & Aims: Many pediatric patients with acute liver failure (PALF) do not receive a specific diagnosis (such as herpes simplex virus or Wilson disease or fatty acid oxidation defects)—they are left with an indeterminate diagnosis and are more likely to undergo liver transplantation, which is contraindicated for some disorders. Strategies to facilitate complete diagnostic testing should increase identification of specific liver diseases and might reduce liver transplantation. We investigated whether performing recommended age-specific diagnostic tests (AS-DTs) at the time of hospital admission reduces the percentage PALFs with an indeterminate diagnosis. Methods: We performed a multinational observational cohort study of 658 PALF participants in the United States and Canada, enrolled at 10 medical centers, during 3 study phases from December 1999 through December 2014. A learning collaborative approach was used to implement AS-DT using an electronic medical record admission order set at hospital admission in phase 3 of the study. Data from 10 study sites participating in all 3 phases were compared before (phases 1 and 2) and after (phase 3) diagnostic test recommendations were inserted into electronic medical record order sets. Results: The percentage of subjects with an indeterminate diagnosis decreased significantly between phases 1–2 (48.0%) and phase 3 (to 30.8%) (P =.0003). The 21-day cumulative incidence rates for liver transplantation were significantly different among phase 1 (34.6%), phase 2 (31.9%), and phase 3 (20.2%) (P =.030). The 21-day cumulative incidence rates for death did not differ significantly among phase 1 (17.9%), phase 2 (11.9%), and phase 3 (11.3%) (P =.20). Conclusions: In a multinational study of children with acute liver failure, we found that incorporating diagnostic test recommendations into electronic medical record order sets accessed at time of admission reduced the percentage with an indeterminate diagnosis that may have reduced liver transplants without increasing mortality. Widespread use of this approach could significantly enhance care of acute liver failure in children.
| Original language | English |
|---|---|
| Pages (from-to) | 1801-1810.e3 |
| Journal | Clinical Gastroenterology and Hepatology |
| Volume | 16 |
| Issue number | 11 |
| DOIs | |
| State | Published - Nov 1 2018 |
Keywords
- Early Detection
- Genetic Disorder
- Hepatic
- Management
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In: Clinical Gastroenterology and Hepatology, Vol. 16, No. 11, 01.11.2018, p. 1801-1810.e3.
Research output: Contribution to journal › Article › peer-review
TY - JOUR
T1 - A Learning Collaborative Approach Increases Specificity of Diagnosis of Acute Liver Failure in Pediatric Patients
AU - Pediatric Acute Liver Failure Study Group
AU - Narkewicz, Michael R.
AU - Horslen, Simon
AU - Hardison, Regina M.
AU - Shneider, Benjamin L.
AU - Rodriguez-Baez, Norberto
AU - Alonso, Estella M.
AU - Ng, Vicky L.
AU - Leonis, Mike A.
AU - Loomes, Kathleen M.
AU - Rudnick, David A.
AU - Rosenthal, Philip
AU - Romero, Rene
AU - Subbarao, Girish C.
AU - Li, Ruosha
AU - Belle, Steven H.
AU - Squires, Robert H.
AU - Squires, Robert H.
AU - Bukauskas, Kathryn
AU - Schulte, Madeline
AU - Narkewicz, Michael R.
AU - Hite, Michelle
AU - Loomes, Kathleen M.
AU - Rand, Elizabeth B.
AU - Piccoli, David
AU - Kawchak, Deborah
AU - Seidman, Christa
AU - Romero, Rene
AU - Karpen, Saul
AU - de la Cruz-Tracy, Liezl
AU - Ng, Vicky
AU - Hunt, Kelsey
AU - Subbarao, Girish C.
AU - Klipsch, Ann
AU - Munson, Sarah
AU - Alonso, Estella M.
AU - Sorenson, Lisa
AU - Kelly, Susan
AU - Neighbors, Katie
AU - Rosenthal, Philip
AU - Fleck, Shannon
AU - Leonis, Mike A.
AU - Bucuvalas, John
AU - Horning, Tracie
AU - Rodriguez Baez, Norberto
AU - Montanye, Shirley
AU - Cowie, Margaret
AU - Horslen, Simon P.
AU - Murray, Karen
AU - Young, Melissa
AU - Nielson, Heather
N1 - Funding Information: Key individuals who have actively participated in the PALF studies by site are listed next. Current Sites, Principal Investigators and Coordinators: Robert H. Squires, MD, Kathryn Bukauskas, RN, CCRC, Madeline Schulte, RN, BSN, Clinical Research Coordinator (Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania); Michael R. Narkewicz, MD, Michelle Hite, MA, CCRC (Children's Hospital Colorado, Aurora, Colorado); Kathleen M. Loomes, MD, Elizabeth B. Rand, MD, David Piccoli, MD, Deborah Kawchak, MS, RD, Christa Seidman, Clinical Research Coordinator (Children's Hospital of Philadelphia, Philadelphia, Pennsylvania); Rene Romero, MD, Saul Karpen, MD, PhD, Liezl de la Cruz-Tracy, CCRC (Emory University, Atlanta, Georgia); Vicky Ng, MD, Kelsey Hunt, Clinical Research Coordinator (Hospital for Sick Children, Toronto, Ontario, Canada); Girish C. Subbarao, MD, Ann Klipsch, RN, Sarah Munson, Clinical Research Coordinator (Indiana University Riley Hospital, Indianapolis, Indiana); Estella M. Alonso, MD, Lisa Sorenson, PhD, Susan Kelly, RN, BSN, Katie Neighbors, MPH, CCRC (Lurie Children's Hospital of Chicago, Chicago, Illinois); Philip Rosenthal, MD, Shannon Fleck, Clinical Research Coordinator (University of California San Francisco, San Francisco, California); Mike A. Leonis, MD, PhD, John Bucuvalas, MD, Tracie Horning, Clinical Research Coordinator (University of Cincinnati, Cincinnati, Ohio); Norberto Rodriguez Baez, MD, Shirley Montanye, RN, Clinical Research Coordinator, Margaret Cowie, Clinical Research Coordinator (University of Texas Southwestern, Dallas, Texas); Simon P. Horslen, MD, Karen Murray, MD, Melissa Young, Clinical Research Coordinator, Heather Nielson, Clinical Research Coordinator, Jani Klein, Clinical Research Coordinator (University of Washington, Seattle, Washington); David A. Rudnick, MD, PhD, Ross W. Shepherd, MD, Kathy Harris, Clinical Research Coordinator (Washington University, St. Louis, Missouri). Previous Sites, Principal Investigators and Coordinators: Saul J. Karpen, MD, PhD, Alejandro De La Torre, Clinical Research Coordinator (Baylor College of Medicine, Houston, Texas); Dominic Dell Olio, MD, Deirdre Kelly, MD, Carla Lloyd, Clinical Research Coordinator (Birmingham Children's Hospital, Birmingham, United Kingdom); Steven J. Lobritto, MD, Sumerah Bakhsh, MPH, Clinical Research Coordinator (Columbia University, New York, New York); Maureen Jonas, MD, Scott A. Elifoson, MD, Roshan Raza, MBBS (Harvard Medical School, Boston, Massachusetts); Kathleen B. Schwarz, MD, Wikrom W. Karnsakul, MD, Mary Kay Alford, RN, MSN, CPNP (Johns Hopkins University, Baltimore, Maryland); Anil Dhawan, MD, Emer Fitzpatrick, MD (King's College Hospital, London, United Kingdom); Benjamin L. Shneider, MD, Nanda N. Kerkar, MD, Brandy Haydel, CCRC, Sreevidya Narayanappa, Clinical Research Coordinator (Mt. Sinai School of Medicine, New York, New York); M. James Lopez, MD, PhD, Victoria Shieck, RN, BSN (University of Michigan, Ann Arbor, Michigan). The authors are also grateful for support from the National Institutes of Health (Edward Doo, MD, Director Liver Disease Research Program, and Averell H. Sherker, MD, Scientific Advisor, Viral Hepatitis and Liver Diseases, DDDN-NIDDK) and for assistance from members of the Data Coordinating Center at the University of Pittsburgh (directed by Steven H. Belle, PhD, MScHyg). Funding Information: Key individuals who have actively participated in the PALF studies by site are listed next. Current Sites, Principal Investigators and Coordinators : Robert H. Squires, MD, Kathryn Bukauskas, RN, CCRC, Madeline Schulte, RN, BSN, Clinical Research Coordinator (Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania); Michael R. Narkewicz, MD, Michelle Hite, MA, CCRC (Children's Hospital Colorado, Aurora, Colorado); Kathleen M. Loomes, MD, Elizabeth B. Rand, MD, David Piccoli, MD, Deborah Kawchak, MS, RD, Christa Seidman, Clinical Research Coordinator (Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania); Rene Romero, MD, Saul Karpen, MD, PhD, Liezl de la Cruz-Tracy, CCRC (Emory University, Atlanta, Georgia); Vicky Ng, MD, Kelsey Hunt, Clinical Research Coordinator (Hospital for Sick Children, Toronto, Ontario, Canada); Girish C. Subbarao, MD, Ann Klipsch, RN, Sarah Munson, Clinical Research Coordinator (Indiana University Riley Hospital, Indianapolis, Indiana); Estella M. Alonso, MD, Lisa Sorenson, PhD, Susan Kelly, RN, BSN, Katie Neighbors, MPH, CCRC (Lurie Children’s Hospital of Chicago, Chicago, Illinois); Philip Rosenthal, MD, Shannon Fleck, Clinical Research Coordinator (University of California San Francisco, San Francisco, California); Mike A. Leonis, MD, PhD, John Bucuvalas, MD, Tracie Horning, Clinical Research Coordinator (University of Cincinnati, Cincinnati, Ohio); Norberto Rodriguez Baez, MD, Shirley Montanye, RN, Clinical Research Coordinator, Margaret Cowie, Clinical Research Coordinator (University of Texas Southwestern, Dallas, Texas); Simon P. Horslen, MD, Karen Murray, MD, Melissa Young, Clinical Research Coordinator, Heather Nielson, Clinical Research Coordinator, Jani Klein, Clinical Research Coordinator (University of Washington, Seattle, Washington); David A. Rudnick, MD, PhD, Ross W. Shepherd, MD, Kathy Harris, Clinical Research Coordinator (Washington University, St. Louis, Missouri). Previous Sites, Principal Investigators and Coordinators : Saul J. Karpen, MD, PhD, Alejandro De La Torre, Clinical Research Coordinator (Baylor College of Medicine, Houston, Texas); Dominic Dell Olio, MD, Deirdre Kelly, MD, Carla Lloyd, Clinical Research Coordinator (Birmingham Children’s Hospital, Birmingham, United Kingdom); Steven J. Lobritto, MD, Sumerah Bakhsh, MPH, Clinical Research Coordinator (Columbia University, New York, New York); Maureen Jonas, MD, Scott A. Elifoson, MD, Roshan Raza, MBBS (Harvard Medical School, Boston, Massachusetts); Kathleen B. Schwarz, MD, Wikrom W. Karnsakul, MD, Mary Kay Alford, RN, MSN, CPNP (Johns Hopkins University, Baltimore, Maryland); Anil Dhawan, MD, Emer Fitzpatrick, MD (King’s College Hospital, London, United Kingdom); Benjamin L. Shneider, MD, Nanda N. Kerkar, MD, Brandy Haydel, CCRC, Sreevidya Narayanappa, Clinical Research Coordinator (Mt. Sinai School of Medicine, New York, New York); M. James Lopez, MD, PhD, Victoria Shieck, RN, BSN (University of Michigan, Ann Arbor, Michigan). The authors are also grateful for support from the National Institutes of Health (Edward Doo, MD, Director Liver Disease Research Program, and Averell H. Sherker, MD, Scientific Advisor, Viral Hepatitis and Liver Diseases, DDDN-NIDDK) and for assistance from members of the Data Coordinating Center at the University of Pittsburgh (directed by Steven H. Belle, PhD, MScHyg). Publisher Copyright: © 2018 AGA Institute
PY - 2018/11/1
Y1 - 2018/11/1
N2 - Background & Aims: Many pediatric patients with acute liver failure (PALF) do not receive a specific diagnosis (such as herpes simplex virus or Wilson disease or fatty acid oxidation defects)—they are left with an indeterminate diagnosis and are more likely to undergo liver transplantation, which is contraindicated for some disorders. Strategies to facilitate complete diagnostic testing should increase identification of specific liver diseases and might reduce liver transplantation. We investigated whether performing recommended age-specific diagnostic tests (AS-DTs) at the time of hospital admission reduces the percentage PALFs with an indeterminate diagnosis. Methods: We performed a multinational observational cohort study of 658 PALF participants in the United States and Canada, enrolled at 10 medical centers, during 3 study phases from December 1999 through December 2014. A learning collaborative approach was used to implement AS-DT using an electronic medical record admission order set at hospital admission in phase 3 of the study. Data from 10 study sites participating in all 3 phases were compared before (phases 1 and 2) and after (phase 3) diagnostic test recommendations were inserted into electronic medical record order sets. Results: The percentage of subjects with an indeterminate diagnosis decreased significantly between phases 1–2 (48.0%) and phase 3 (to 30.8%) (P =.0003). The 21-day cumulative incidence rates for liver transplantation were significantly different among phase 1 (34.6%), phase 2 (31.9%), and phase 3 (20.2%) (P =.030). The 21-day cumulative incidence rates for death did not differ significantly among phase 1 (17.9%), phase 2 (11.9%), and phase 3 (11.3%) (P =.20). Conclusions: In a multinational study of children with acute liver failure, we found that incorporating diagnostic test recommendations into electronic medical record order sets accessed at time of admission reduced the percentage with an indeterminate diagnosis that may have reduced liver transplants without increasing mortality. Widespread use of this approach could significantly enhance care of acute liver failure in children.
AB - Background & Aims: Many pediatric patients with acute liver failure (PALF) do not receive a specific diagnosis (such as herpes simplex virus or Wilson disease or fatty acid oxidation defects)—they are left with an indeterminate diagnosis and are more likely to undergo liver transplantation, which is contraindicated for some disorders. Strategies to facilitate complete diagnostic testing should increase identification of specific liver diseases and might reduce liver transplantation. We investigated whether performing recommended age-specific diagnostic tests (AS-DTs) at the time of hospital admission reduces the percentage PALFs with an indeterminate diagnosis. Methods: We performed a multinational observational cohort study of 658 PALF participants in the United States and Canada, enrolled at 10 medical centers, during 3 study phases from December 1999 through December 2014. A learning collaborative approach was used to implement AS-DT using an electronic medical record admission order set at hospital admission in phase 3 of the study. Data from 10 study sites participating in all 3 phases were compared before (phases 1 and 2) and after (phase 3) diagnostic test recommendations were inserted into electronic medical record order sets. Results: The percentage of subjects with an indeterminate diagnosis decreased significantly between phases 1–2 (48.0%) and phase 3 (to 30.8%) (P =.0003). The 21-day cumulative incidence rates for liver transplantation were significantly different among phase 1 (34.6%), phase 2 (31.9%), and phase 3 (20.2%) (P =.030). The 21-day cumulative incidence rates for death did not differ significantly among phase 1 (17.9%), phase 2 (11.9%), and phase 3 (11.3%) (P =.20). Conclusions: In a multinational study of children with acute liver failure, we found that incorporating diagnostic test recommendations into electronic medical record order sets accessed at time of admission reduced the percentage with an indeterminate diagnosis that may have reduced liver transplants without increasing mortality. Widespread use of this approach could significantly enhance care of acute liver failure in children.
KW - Early Detection
KW - Genetic Disorder
KW - Hepatic
KW - Management
UR - http://www.scopus.com/inward/record.url?scp=85053675006&partnerID=8YFLogxK
U2 - 10.1016/j.cgh.2018.04.050
DO - 10.1016/j.cgh.2018.04.050
M3 - Article
C2 - 29723692
AN - SCOPUS:85053675006
SN - 1542-3565
VL - 16
SP - 1801-1810.e3
JO - Clinical Gastroenterology and Hepatology
JF - Clinical Gastroenterology and Hepatology
IS - 11
ER -