Cystic fibrosis-related diabetes: The patient perspective

Cystic fibrosis-related diabetes (CFRD) affects nearly 20% of adolescents and 40–50% of adults. However, the impact on patients and their families is poorly understood. Here, we examine how patients perceive CFRD and identify gaps in our understanding of the patient experience.Despite its relatively...

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Autores principales:	Kelly A. Mason, Brynn E. Marks, Colleen L. Wood, Trang N. Le
Formato:	article
Lenguaje:	EN
Publicado:	Elsevier 2021
Materias:	Cystic fibrosis-related diabetes Patient Perspective Understanding Perception Quality of life Diseases of the endocrine glands. Clinical endocrinology RC648-665
Acceso en línea:	https://doaj.org/article/883e22f7d95d4bff9ab60fb76894ba94
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spelling	oai:doaj.org-article:883e22f7d95d4bff9ab60fb76894ba942021-12-04T04:34:20ZCystic fibrosis-related diabetes: The patient perspective2214-623710.1016/j.jcte.2021.100279https://doaj.org/article/883e22f7d95d4bff9ab60fb76894ba942021-12-01T00:00:00Zhttp://www.sciencedirect.com/science/article/pii/S2214623721000314https://doaj.org/toc/2214-6237Cystic fibrosis-related diabetes (CFRD) affects nearly 20% of adolescents and 40–50% of adults. However, the impact on patients and their families is poorly understood. Here, we examine how patients perceive CFRD and identify gaps in our understanding of the patient experience.Despite its relatively high prevalence, data suggest that many individuals are not aware of the possibility of developing CFRD or compare it to other types of diabetes. Annual oral glucose tolerance testing (OGTT) may serve as an opportunity to provide education and prepare individuals for the possibility of developing abnormalities in glucose tolerance.Many cite lack of awareness of CFRD as the most difficult part of the diagnosis. While factors such as older age and a strong support system promote acceptance, most individuals view the diagnosis negatively and struggle to balance the demands of diabetes with other obligations, including airway clearance, nebulizer therapies, supplementation nutrition, and administration of vitamins and medications. Relatively few people with CFRD monitor their blood glucoses consistently, which is attributed to time constraints or an attempt to avoid pain. In addition, many feel that they are not prone to hypoglycemia and are not concerned with long-term complications, anticipating that they will succumb to their pulmonary disease before these become problematic. The adolescent period presents unique challenges for adherence as children work to develop autonomy.Factors that promote CFRD adherence include incorporating management into daily CF routines and the support of knowledgeable providers to help develop an individualized approach to management. Diabetes technology has the potential to reduce treatment burden and improve glycemic control, but data in CFRD are limited, and additional study is needed.Given that CFRD is associated with a decline in health-related quality of life, it is critical that providers understand patients’ perspectives and address gaps in understanding and barriers to management.Kelly A. MasonBrynn E. MarksColleen L. WoodTrang N. LeElsevierarticleCystic fibrosis-related diabetesPatientPerspectiveUnderstandingPerceptionQuality of lifeDiseases of the endocrine glands. Clinical endocrinologyRC648-665ENJournal of Clinical & Translational Endocrinology, Vol 26, Iss , Pp 100279- (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Cystic fibrosis-related diabetes Patient Perspective Understanding Perception Quality of life Diseases of the endocrine glands. Clinical endocrinology RC648-665
spellingShingle	Cystic fibrosis-related diabetes Patient Perspective Understanding Perception Quality of life Diseases of the endocrine glands. Clinical endocrinology RC648-665 Kelly A. Mason Brynn E. Marks Colleen L. Wood Trang N. Le Cystic fibrosis-related diabetes: The patient perspective
description	Cystic fibrosis-related diabetes (CFRD) affects nearly 20% of adolescents and 40–50% of adults. However, the impact on patients and their families is poorly understood. Here, we examine how patients perceive CFRD and identify gaps in our understanding of the patient experience.Despite its relatively high prevalence, data suggest that many individuals are not aware of the possibility of developing CFRD or compare it to other types of diabetes. Annual oral glucose tolerance testing (OGTT) may serve as an opportunity to provide education and prepare individuals for the possibility of developing abnormalities in glucose tolerance.Many cite lack of awareness of CFRD as the most difficult part of the diagnosis. While factors such as older age and a strong support system promote acceptance, most individuals view the diagnosis negatively and struggle to balance the demands of diabetes with other obligations, including airway clearance, nebulizer therapies, supplementation nutrition, and administration of vitamins and medications. Relatively few people with CFRD monitor their blood glucoses consistently, which is attributed to time constraints or an attempt to avoid pain. In addition, many feel that they are not prone to hypoglycemia and are not concerned with long-term complications, anticipating that they will succumb to their pulmonary disease before these become problematic. The adolescent period presents unique challenges for adherence as children work to develop autonomy.Factors that promote CFRD adherence include incorporating management into daily CF routines and the support of knowledgeable providers to help develop an individualized approach to management. Diabetes technology has the potential to reduce treatment burden and improve glycemic control, but data in CFRD are limited, and additional study is needed.Given that CFRD is associated with a decline in health-related quality of life, it is critical that providers understand patients’ perspectives and address gaps in understanding and barriers to management.
format	article
author	Kelly A. Mason Brynn E. Marks Colleen L. Wood Trang N. Le
author_facet	Kelly A. Mason Brynn E. Marks Colleen L. Wood Trang N. Le
author_sort	Kelly A. Mason
title	Cystic fibrosis-related diabetes: The patient perspective
title_short	Cystic fibrosis-related diabetes: The patient perspective
title_full	Cystic fibrosis-related diabetes: The patient perspective
title_fullStr	Cystic fibrosis-related diabetes: The patient perspective
title_full_unstemmed	Cystic fibrosis-related diabetes: The patient perspective
title_sort	cystic fibrosis-related diabetes: the patient perspective
publisher	Elsevier
publishDate	2021
url	https://doaj.org/article/883e22f7d95d4bff9ab60fb76894ba94
work_keys_str_mv	AT kellyamason cysticfibrosisrelateddiabetesthepatientperspective AT brynnemarks cysticfibrosisrelateddiabetesthepatientperspective AT colleenlwood cysticfibrosisrelateddiabetesthepatientperspective AT trangnle cysticfibrosisrelateddiabetesthepatientperspective
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Cystic fibrosis-related diabetes: The patient perspective

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