Helen Couch, Andrew Pearson, Neha Malhotra, Michael Ferguson, George Couch, Clare Gilbert, Kate Morgan, Sarah Mann, Kelly Cassidy, Sarah Worthington, Elaine O'Shea, Maria SalomonEstebanez, Chris Worth, Senthil Senniappan, Indraneel Banerjee, Antonia Dastamani
{"title":"持续血糖监测在先天性高胰岛素血症的管理：一项全国用户满意度调查，英国。","authors":"Helen Couch, Andrew Pearson, Neha Malhotra, Michael Ferguson, George Couch, Clare Gilbert, Kate Morgan, Sarah Mann, Kelly Cassidy, Sarah Worthington, Elaine O'Shea, Maria SalomonEstebanez, Chris Worth, Senthil Senniappan, Indraneel Banerjee, Antonia Dastamani","doi":"10.1210/clinem/dgaf313","DOIUrl":null,"url":null,"abstract":"<p><strong>Context: </strong>Congenital Hyperinsulinism (CHI) causes severe and recurrent hypoglycaemia with a 33-50% risk of neurodisability necessitating rigorous glucose monitoring. Continuous glucose monitoring (CGM) is now widely used in CHI with limited data on user-reported benefits. There are no validated instruments available to assess the impact of CGM use on quality of life (QOL) in CHI.</p><p><strong>Objective: </strong>To evaluate CGM user satisfaction of patients with CHI and their carers.</p><p><strong>Design: </strong>Modified CGM-satisfaction (CGM-Sat) and glucose monitoring surveys (GMS) were distributed electronically to CHI families using CGM.</p><p><strong>Setting: </strong>CHI Highly Specialised Services, UK, May to August 2023.</p><p><strong>Patients or other participants: </strong>Parents (n = 86) and teachers (n = 15) of patients with CHI using CGM (0-18 years old), and patients themselves if ≥7 years old (n = 20).</p><p><strong>Main outcome measures: </strong>User reported ease of CGM handling, influence of CGM on CHI management and QOL, and desire for continued use of CGM.</p><p><strong>Results: </strong>Most respondents reacted positively to statements regarding: CGM device handling (58% agreed or strongly agreed), influence on CHI management (70%), QOL (75%), and continued use (86%). Satisfaction with CGM was positively correlated with duration of use (r = 0.40, p < 0.001). 86% of users reported checking the CGM 1-5 times per hour. Users reported perceived improvements in safety, hypoglycaemia detection, freedom and independence, despite concerns with accuracy and device range.</p><p><strong>Conclusions: </strong>Patients with CHI and their carers reported that they feel safer and perceive benefits from CGM in all aspects of living with CHI.</p>","PeriodicalId":520805,"journal":{"name":"The Journal of clinical endocrinology and metabolism","volume":" ","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2025-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A National User-Satisfaction Survey, UK.\",\"authors\":\"Helen Couch, Andrew Pearson, Neha Malhotra, Michael Ferguson, George Couch, Clare Gilbert, Kate Morgan, Sarah Mann, Kelly Cassidy, Sarah Worthington, Elaine O'Shea, Maria SalomonEstebanez, Chris Worth, Senthil Senniappan, Indraneel Banerjee, Antonia Dastamani\",\"doi\":\"10.1210/clinem/dgaf313\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Context: </strong>Congenital Hyperinsulinism (CHI) causes severe and recurrent hypoglycaemia with a 33-50% risk of neurodisability necessitating rigorous glucose monitoring. Continuous glucose monitoring (CGM) is now widely used in CHI with limited data on user-reported benefits. There are no validated instruments available to assess the impact of CGM use on quality of life (QOL) in CHI.</p><p><strong>Objective: </strong>To evaluate CGM user satisfaction of patients with CHI and their carers.</p><p><strong>Design: </strong>Modified CGM-satisfaction (CGM-Sat) and glucose monitoring surveys (GMS) were distributed electronically to CHI families using CGM.</p><p><strong>Setting: </strong>CHI Highly Specialised Services, UK, May to August 2023.</p><p><strong>Patients or other participants: </strong>Parents (n = 86) and teachers (n = 15) of patients with CHI using CGM (0-18 years old), and patients themselves if ≥7 years old (n = 20).</p><p><strong>Main outcome measures: </strong>User reported ease of CGM handling, influence of CGM on CHI management and QOL, and desire for continued use of CGM.</p><p><strong>Results: </strong>Most respondents reacted positively to statements regarding: CGM device handling (58% agreed or strongly agreed), influence on CHI management (70%), QOL (75%), and continued use (86%). Satisfaction with CGM was positively correlated with duration of use (r = 0.40, p < 0.001). 86% of users reported checking the CGM 1-5 times per hour. Users reported perceived improvements in safety, hypoglycaemia detection, freedom and independence, despite concerns with accuracy and device range.</p><p><strong>Conclusions: </strong>Patients with CHI and their carers reported that they feel safer and perceive benefits from CGM in all aspects of living with CHI.</p>\",\"PeriodicalId\":520805,\"journal\":{\"name\":\"The Journal of clinical endocrinology and metabolism\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2025-05-26\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"The Journal of clinical endocrinology and metabolism\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1210/clinem/dgaf313\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"The Journal of clinical endocrinology and metabolism","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1210/clinem/dgaf313","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A National User-Satisfaction Survey, UK.
Context: Congenital Hyperinsulinism (CHI) causes severe and recurrent hypoglycaemia with a 33-50% risk of neurodisability necessitating rigorous glucose monitoring. Continuous glucose monitoring (CGM) is now widely used in CHI with limited data on user-reported benefits. There are no validated instruments available to assess the impact of CGM use on quality of life (QOL) in CHI.
Objective: To evaluate CGM user satisfaction of patients with CHI and their carers.
Design: Modified CGM-satisfaction (CGM-Sat) and glucose monitoring surveys (GMS) were distributed electronically to CHI families using CGM.
Setting: CHI Highly Specialised Services, UK, May to August 2023.
Patients or other participants: Parents (n = 86) and teachers (n = 15) of patients with CHI using CGM (0-18 years old), and patients themselves if ≥7 years old (n = 20).
Main outcome measures: User reported ease of CGM handling, influence of CGM on CHI management and QOL, and desire for continued use of CGM.
Results: Most respondents reacted positively to statements regarding: CGM device handling (58% agreed or strongly agreed), influence on CHI management (70%), QOL (75%), and continued use (86%). Satisfaction with CGM was positively correlated with duration of use (r = 0.40, p < 0.001). 86% of users reported checking the CGM 1-5 times per hour. Users reported perceived improvements in safety, hypoglycaemia detection, freedom and independence, despite concerns with accuracy and device range.
Conclusions: Patients with CHI and their carers reported that they feel safer and perceive benefits from CGM in all aspects of living with CHI.
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