Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic Analysis
Background and AimsIn patients with congenital hyperinsulinism (CHI), recurrent hypoglycaemia can lead to longstanding neurological impairments. At present, glycaemic monitoring is with intermittent fingerprick blood glucose testing but this lacks utility to identify patterns and misses hypoglycaemi...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-07-01
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| Series: | Frontiers in Endocrinology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fendo.2022.894559/full |
| _version_ | 1818473663881543680 |
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| author | Sameera Hannah Auckburally Sameera Hannah Auckburally Chris Worth Chris Worth Maria Salomon-Estebanez Jacqueline Nicholson Simon Harper Paul W. Nutter Indraneel Banerjee Indraneel Banerjee |
| author_facet | Sameera Hannah Auckburally Sameera Hannah Auckburally Chris Worth Chris Worth Maria Salomon-Estebanez Jacqueline Nicholson Simon Harper Paul W. Nutter Indraneel Banerjee Indraneel Banerjee |
| author_sort | Sameera Hannah Auckburally |
| collection | DOAJ |
| description | Background and AimsIn patients with congenital hyperinsulinism (CHI), recurrent hypoglycaemia can lead to longstanding neurological impairments. At present, glycaemic monitoring is with intermittent fingerprick blood glucose testing but this lacks utility to identify patterns and misses hypoglycaemic episodes between tests. Although continuous glucose monitoring (CGM) is well established in type 1 diabetes, its use has only been described in small studies in patients with CHI. In such studies, medical perspectives have been provided without fully considering the views of families using CGM. In this qualitative study, we aimed to explore families’ experiences of using CGM in order to inform future clinical strategies for the management of CHI.MethodsTen patients with CHI in a specialist centre used CGM for twelve weeks. All were invited to participate. Semi-structured interviews were conducted with nine families in whom patient ages ranged between two and seventeen years. Transcripts of the audio-recorded interviews were analysed using an inductive thematic analysis method.ResultsAnalysis revealed five core themes: CGM’s function as an educational tool; behavioural changes; positive experiences; negative experiences; and design improvements. Close monitoring and retrospective analysis of glucose trends allowed for enhanced understanding of factors that influenced glucose levels at various times of the day. Parents noted more hypoglycaemic episodes than previously encountered through fingerprick tests; this new knowledge prompted modification of daily routines to prevent and improve the management of hypoglycaemia. CGM use was viewed favourably as offering parental reassurance, reduced fingerprick tests and predictive warnings. However, families also reported unfavourable aspects of alarms and questionable accuracy at low glucose levels. Adolescents were frustrated by the short proximity range for data transmission resulting in the need to always carry a separate receiver. Overall, families were positive about the use of CGM but expected application to be tailored to their child’s medical condition.ConclusionsPatients and families with CHI using CGM noticed trends in glucose levels which motivated behavioural changes to reduce hypoglycaemia with advantages outweighing disadvantages. They expected CHI-specific modifications to enhance utility. Future design of CGM should incorporate end users’ opinions and experiences for optimal glycaemic monitoring of CHI. |
| first_indexed | 2024-04-14T04:26:30Z |
| format | Article |
| id | doaj.art-9b4f8cb57d6b44f69294b9d431b9b9de |
| institution | Directory Open Access Journal |
| issn | 1664-2392 |
| language | English |
| last_indexed | 2024-04-14T04:26:30Z |
| publishDate | 2022-07-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Endocrinology |
| spelling | doaj.art-9b4f8cb57d6b44f69294b9d431b9b9de2022-12-22T02:12:18ZengFrontiers Media S.A.Frontiers in Endocrinology1664-23922022-07-011310.3389/fendo.2022.894559894559Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic AnalysisSameera Hannah Auckburally0Sameera Hannah Auckburally1Chris Worth2Chris Worth3Maria Salomon-Estebanez4Jacqueline Nicholson5Simon Harper6Paul W. Nutter7Indraneel Banerjee8Indraneel Banerjee9Department of Paediatric Endocrinology, Royal Manchester Children’s Hospital, Manchester, United KingdomFaculty of Health and Medicine, Lancaster University, Lancaster, United KingdomDepartment of Paediatric Endocrinology, Royal Manchester Children’s Hospital, Manchester, United KingdomDepartment of Computer Science, University of Manchester, Manchester, United KingdomDepartment of Paediatric Endocrinology, Royal Manchester Children’s Hospital, Manchester, United KingdomPaediatric Psychosocial Service, Royal Manchester Children’s Hospital, Manchester, United KingdomDepartment of Computer Science, University of Manchester, Manchester, United KingdomDepartment of Computer Science, University of Manchester, Manchester, United KingdomDepartment of Paediatric Endocrinology, Royal Manchester Children’s Hospital, Manchester, United KingdomFaculty of Biology, Medicine and Health, University of Manchester, Manchester, United KingdomBackground and AimsIn patients with congenital hyperinsulinism (CHI), recurrent hypoglycaemia can lead to longstanding neurological impairments. At present, glycaemic monitoring is with intermittent fingerprick blood glucose testing but this lacks utility to identify patterns and misses hypoglycaemic episodes between tests. Although continuous glucose monitoring (CGM) is well established in type 1 diabetes, its use has only been described in small studies in patients with CHI. In such studies, medical perspectives have been provided without fully considering the views of families using CGM. In this qualitative study, we aimed to explore families’ experiences of using CGM in order to inform future clinical strategies for the management of CHI.MethodsTen patients with CHI in a specialist centre used CGM for twelve weeks. All were invited to participate. Semi-structured interviews were conducted with nine families in whom patient ages ranged between two and seventeen years. Transcripts of the audio-recorded interviews were analysed using an inductive thematic analysis method.ResultsAnalysis revealed five core themes: CGM’s function as an educational tool; behavioural changes; positive experiences; negative experiences; and design improvements. Close monitoring and retrospective analysis of glucose trends allowed for enhanced understanding of factors that influenced glucose levels at various times of the day. Parents noted more hypoglycaemic episodes than previously encountered through fingerprick tests; this new knowledge prompted modification of daily routines to prevent and improve the management of hypoglycaemia. CGM use was viewed favourably as offering parental reassurance, reduced fingerprick tests and predictive warnings. However, families also reported unfavourable aspects of alarms and questionable accuracy at low glucose levels. Adolescents were frustrated by the short proximity range for data transmission resulting in the need to always carry a separate receiver. Overall, families were positive about the use of CGM but expected application to be tailored to their child’s medical condition.ConclusionsPatients and families with CHI using CGM noticed trends in glucose levels which motivated behavioural changes to reduce hypoglycaemia with advantages outweighing disadvantages. They expected CHI-specific modifications to enhance utility. Future design of CGM should incorporate end users’ opinions and experiences for optimal glycaemic monitoring of CHI.https://www.frontiersin.org/articles/10.3389/fendo.2022.894559/fullcongenital hyperinsulinismcontinuous glucose monitoringthematic analysisinterviewsexperiences |
| spellingShingle | Sameera Hannah Auckburally Sameera Hannah Auckburally Chris Worth Chris Worth Maria Salomon-Estebanez Jacqueline Nicholson Simon Harper Paul W. Nutter Indraneel Banerjee Indraneel Banerjee Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic Analysis Frontiers in Endocrinology congenital hyperinsulinism continuous glucose monitoring thematic analysis interviews experiences |
| title | Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic Analysis |
| title_full | Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic Analysis |
| title_fullStr | Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic Analysis |
| title_full_unstemmed | Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic Analysis |
| title_short | Families’ Experiences of Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A Thematic Analysis |
| title_sort | families experiences of continuous glucose monitoring in the management of congenital hyperinsulinism a thematic analysis |
| topic | congenital hyperinsulinism continuous glucose monitoring thematic analysis interviews experiences |
| url | https://www.frontiersin.org/articles/10.3389/fendo.2022.894559/full |
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