TY - JOUR
T1 - PATIENT AND FAMILY INPUT TO DETERMINE EXPERIENCES AND RESEARCH INTERESTS IN PEDIATRIC PANCREATITIS
T2 - AN INSPPIRE-2 STUDY
AU - Consortium for the Study of Chronic Pancreatitis, Diabetes, and Pancreatic Cancer (CPDPC)
AU - Cress, Gretchen A.
AU - Scudiero, Karen T.
AU - Wang, Fuchenchu
AU - Patrick, Vanessa B.
AU - Wood, Phoebe M.
AU - Yuan, Ying
AU - Lowe, Mark E.
AU - Uc, Aliye
N1 - Publisher Copyright:
© 2024 Lippincott Williams and Wilkins. All rights reserved.
PY - 2024
Y1 - 2024
N2 - Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.
AB - Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.
KW - acute recurrent pancreatitis
KW - children
KW - chronic pancreatitis
KW - patient reported experience
KW - pediatric
UR - http://www.scopus.com/inward/record.url?scp=85204216076&partnerID=8YFLogxK
U2 - 10.1097/MPA.0000000000002390
DO - 10.1097/MPA.0000000000002390
M3 - Article
C2 - 39259842
AN - SCOPUS:85204216076
SN - 0885-3177
JO - Pancreas
JF - Pancreas
M1 - 10.1097/MPA.0000000000002390
ER -