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

IF 1.7 4区医学 Q3 GASTROENTEROLOGY & HEPATOLOGY

Pancreas Pub Date : 2024-09-12 DOI:10.1097/mpa.0000000000002390

Gretchen A Cress,Karen T Scudiero,Fuchenchu Wang,Vanessa B Patrick,Phoebe M Wood,Ying Yuan,Mark E Lowe,Aliye Uc,

{"title":"PATIENT AND FAMILY INPUT TO DETERMINE EXPERIENCES AND RESEARCH INTERESTS IN PEDIATRIC PANCREATITIS: AN INSPPIRE-2 STUDY.","authors":"Gretchen A Cress,Karen T Scudiero,Fuchenchu Wang,Vanessa B Patrick,Phoebe M Wood,Ying Yuan,Mark E Lowe,Aliye Uc,","doi":"10.1097/mpa.0000000000002390","DOIUrl":null,"url":null,"abstract":"OBJECTIVES\r\nThe 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.\r\n\r\nMETHODS\r\nChildren 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.\r\n\r\nRESULTS\r\nAmong 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.\r\n\r\nCONCLUSIONS\r\nThis 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.","PeriodicalId":19733,"journal":{"name":"Pancreas","volume":null,"pages":null},"PeriodicalIF":1.7000,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Pancreas","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1097/mpa.0000000000002390","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"GASTROENTEROLOGY & HEPATOLOGY","Score":null,"Total":0}

引用次数: 0

Abstract

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.

查看原文本刊更多论文

患者和家属参与确定小儿胰腺炎的经验和研究兴趣：Insppire-2 研究。

方法胰腺炎患儿及其家属完成了一项网络调查。评估了受试者对症状或生活质量问题以及未来研究课题的优先排序。结果在 80 名参与者中，有 18 名胰腺炎患儿和 62 名家庭成员。排在前五位的症状或生活质量问题是：1）疼痛；2）疲劳；3）旷课；4）胃部不适；5）不知道何时发作。排在前五位的未来研究课题是：1）如何预防胰腺炎发作；2）胰腺炎如何影响身体其他部位；3）治疗或处理疼痛的方法；4）胰腺炎的病因；5）向医生传授胰腺炎知识。最令人烦恼的症状是疼痛、疲劳和胃部不适。胰腺炎患儿和家属希望今后的研究主要集中在预防胰腺炎发作、疼痛治疗和胰腺炎并发症方面。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Pancreas 医学-胃肠肝病学

CiteScore

4.70

自引率

3.40%

发文量

289

审稿时长

1 months

期刊介绍： Pancreas provides a central forum for communication of original works involving both basic and clinical research on the exocrine and endocrine pancreas and their interrelationships and consequences in disease states. This multidisciplinary, international journal covers the whole spectrum of basic sciences, etiology, prevention, pathophysiology, diagnosis, and surgical and medical management of pancreatic diseases, including cancer.