PATIENT AND FAMILY INPUT TO DETERMINE EXPERIENCES AND RESEARCH INTERESTS IN PEDIATRIC PANCREATITIS: AN INSPPIRE-2 STUDY

Gretchen A Cress; Karen T Scudiero; Fuchenchu Wang; Vanessa B Patrick; Phoebe M Wood; Ying Yuan; Mark E Lowe; Aliye Uc; Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer (CPDPC)

doi:10.1097/MPA.0000000000002390

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PATIENT AND FAMILY INPUT TO DETERMINE EXPERIENCES AND RESEARCH INTERESTS IN PEDIATRIC PANCREATITIS: AN INSPPIRE-2 STUDY

Journal article

Peer reviewed

PATIENT AND FAMILY INPUT TO DETERMINE EXPERIENCES AND RESEARCH INTERESTS IN PEDIATRIC PANCREATITIS: AN INSPPIRE-2 STUDY

Gretchen A Cress, Karen T Scudiero, Fuchenchu Wang, Vanessa B Patrick, Phoebe M Wood, Ying Yuan, Mark E Lowe, Aliye Uc and Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer (CPDPC)

Pancreas, Vol.54(1), pp.e18-e22

01/2025

DOI: 10.1097/MPA.0000000000002390

PMCID: PMC11634667

PMID: 39259842

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https://pmc.ncbi.nlm.nih.gov/articles/PMC11634667/pdf/nihms-2009153.pdfView

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Abstract

The aim of this study was to determine patient reported burdensome experiences and research interests in children with acute recurrent pancreatitis or chronic pancreatitis and their families.OBJECTIVESThe aim of this study was to determine patient reported burdensome experiences and research interests in children with acute recurrent pancreatitis or chronic pancreatitis and their families.Children with pancreatitis and their families completed a web-based survey. Subject prioritized rankings of symptoms or quality of life issues and topics for future research were assessed. Data are presented as family and children scores.METHODSChildren with pancreatitis and their families completed a web-based survey. Subject prioritized rankings of symptoms or quality of life issues and topics for future research were assessed. Data are presented as family and children scores.Among 80 participants, 18 were children with pancreatitis and 62 were family members. Top 5 ranked symptoms or quality of life issues were:1) pain, 2) fatigue, 3) missing school, 4) upset stomach, and 5) not knowing when an attack will occur. Top 5 ranked future research topics were:1) how to prevent a pancreatitis attack, 2) how pancreatitis affects other parts of the body, 3) ways to treat or handle pain, 4) what is the cause of pancreatitis, and 5) teach doctors about pancreatitis.RESULTSAmong 80 participants, 18 were children with pancreatitis and 62 were family members. Top 5 ranked symptoms or quality of life issues were:1) pain, 2) fatigue, 3) missing school, 4) upset stomach, and 5) not knowing when an attack will occur. Top 5 ranked future research topics were:1) how to prevent a pancreatitis attack, 2) how pancreatitis affects other parts of the body, 3) ways to treat or handle pain, 4) what is the cause of pancreatitis, and 5) teach doctors about pancreatitis.This study highlights the importance of patient and family input in caring for children with pancreatitis. The most bothersome symptoms were pain, fatigue and upset stomach. Children with pancreatitis and families would like future research to primarily focus on prevention of pancreatitis attacks, pain therapy, and complications of pancreatitis.CONCLUSIONSThis study highlights the importance of patient and family input in caring for children with pancreatitis. The most bothersome symptoms were pain, fatigue and upset stomach. Children with pancreatitis and families would like future research to primarily focus on prevention of pancreatitis attacks, pain therapy, and complications of pancreatitis.

patient-reported experience

acute recurrent pancreatitis

children

chronic pancreatitis

pediatric

Details

Title: Subtitle: PATIENT AND FAMILY INPUT TO DETERMINE EXPERIENCES AND RESEARCH INTERESTS IN PEDIATRIC PANCREATITIS: AN INSPPIRE-2 STUDY
Creators: Gretchen A Cress - University of Iowa
Karen T Scudiero - University of Iowa
Fuchenchu Wang - The University of Texas MD Anderson Cancer Center
Vanessa B Patrick - Indiana University School of Medicine
Phoebe M Wood - Children's Hospital of Philadelphia
Ying Yuan - The University of Texas MD Anderson Cancer Center
Mark E Lowe - Washington University in St. Louis School of Medicine
Aliye Uc - University of Iowa
Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer (CPDPC)
Resource Type: Journal article
Publication Details: Pancreas, Vol.54(1), pp.e18-e22
DOI: 10.1097/MPA.0000000000002390
PMID: 39259842
PMCID: PMC11634667
NLM abbreviation: Pancreas
ISSN: 1536-4828
eISSN: 1536-4828
Publisher: LIPPINCOTT WILLIAMS & WILKINS; PHILADELPHIA
Grant note: National Institute of Diabetes and Digestive and Kidney Diseases and National Cancer Institute of the National Institutes of Health: 2U01 DK108334, 2U01 DK108328 National Center for Advancing Translational Sciences of the National Institutes of Health: UM1TR004403
Research reported in this publication was supported by National Institute of Diabetes and Digestive and Kidney Diseases and National Cancer Institute of the National Institutes of Health under award numbers 2U01 DK108334 and 2U01 DK108328 and by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UM1TR004403
Language: English
Electronic publication date: 09/12/2024
Date published: 01/2025
Academic Unit: Stead Family Department of Pediatrics; Radiation Oncology; Gastroenterology, Hepatology, Pancreatology, and Nutrition
Record Identifier: 9984704840402771

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