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Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management

BACKGROUND: Congenital adrenal hyperplasia (CAH) is caused by a deficiency of one of the enzymes required for cortisol biosynthesis. The disease is classified as either classic (severe phenotype), subdivided into simple virilizing (SV) and salt‐wasting (SW), or non‐classic (NC) CAH. The treatment re...

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Autores principales: Ekbom, Kerstin, Strandqvist, Anna, Lajic, Svetlana, Hirschberg, Angelica L, Falhammar, Henrik, Nordenström, Anna
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8246868/
https://www.ncbi.nlm.nih.gov/pubmed/33346381
http://dx.doi.org/10.1111/cen.14398
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author Ekbom, Kerstin
Strandqvist, Anna
Lajic, Svetlana
Hirschberg, Angelica L
Falhammar, Henrik
Nordenström, Anna
author_facet Ekbom, Kerstin
Strandqvist, Anna
Lajic, Svetlana
Hirschberg, Angelica L
Falhammar, Henrik
Nordenström, Anna
author_sort Ekbom, Kerstin
collection PubMed
description BACKGROUND: Congenital adrenal hyperplasia (CAH) is caused by a deficiency of one of the enzymes required for cortisol biosynthesis. The disease is classified as either classic (severe phenotype), subdivided into simple virilizing (SV) and salt‐wasting (SW), or non‐classic (NC) CAH. The treatment regime involves life‐long glucocorticoid replacement, especially in classic phenotype. OBJECTIVES: We aimed to assess medication adherence, endocrine knowledge and self‐management in patients with CAH and to compare patients’ and physicians’ assessments of medication adherence. METHODS: A prospective cross‐sectional study of 108 patients with CAH (52 children and 56 adults) and 45 parents/caregivers. Two adherence measures were used, a self‐reported questionnaire named Adherence Starts with Knowledge (ASK‐12) with a cut‐off level > 22 defined as poor adherence rate, and an assessment by a physician based on growth rate, 17‐hydroxyprogesterone profile, and medical history, ranked using a five‐point Likert scale. Measurements of the patients’/parents’ knowledge and self‐management were performed using Endocrine Society Clinical Practice Guidelines. RESULTS: Self‐reported medication adherence was good with 74% of the participants reported good adherence with higher adherence in patients with the SW form. The highest endocrine knowledge and self‐management were found in parents compared with children and adults with classic CAH. There was 30% discordance between the assessments by a physician and the self‐reported ASK‐12 scores independent of the severity of CAH. CONCLUSION: Patients and endocrinologists reported high medication adherence, however, discordance was found in 30% of the studied patients. Patients with the more severe form of CAH had higher adherence rates and demonstrated good endocrine knowledge/self‐management.
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spelling pubmed-82468682021-07-02 Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management Ekbom, Kerstin Strandqvist, Anna Lajic, Svetlana Hirschberg, Angelica L Falhammar, Henrik Nordenström, Anna Clin Endocrinol (Oxf) Original Articles BACKGROUND: Congenital adrenal hyperplasia (CAH) is caused by a deficiency of one of the enzymes required for cortisol biosynthesis. The disease is classified as either classic (severe phenotype), subdivided into simple virilizing (SV) and salt‐wasting (SW), or non‐classic (NC) CAH. The treatment regime involves life‐long glucocorticoid replacement, especially in classic phenotype. OBJECTIVES: We aimed to assess medication adherence, endocrine knowledge and self‐management in patients with CAH and to compare patients’ and physicians’ assessments of medication adherence. METHODS: A prospective cross‐sectional study of 108 patients with CAH (52 children and 56 adults) and 45 parents/caregivers. Two adherence measures were used, a self‐reported questionnaire named Adherence Starts with Knowledge (ASK‐12) with a cut‐off level > 22 defined as poor adherence rate, and an assessment by a physician based on growth rate, 17‐hydroxyprogesterone profile, and medical history, ranked using a five‐point Likert scale. Measurements of the patients’/parents’ knowledge and self‐management were performed using Endocrine Society Clinical Practice Guidelines. RESULTS: Self‐reported medication adherence was good with 74% of the participants reported good adherence with higher adherence in patients with the SW form. The highest endocrine knowledge and self‐management were found in parents compared with children and adults with classic CAH. There was 30% discordance between the assessments by a physician and the self‐reported ASK‐12 scores independent of the severity of CAH. CONCLUSION: Patients and endocrinologists reported high medication adherence, however, discordance was found in 30% of the studied patients. Patients with the more severe form of CAH had higher adherence rates and demonstrated good endocrine knowledge/self‐management. John Wiley and Sons Inc. 2021-01-03 2021-05 /pmc/articles/PMC8246868/ /pubmed/33346381 http://dx.doi.org/10.1111/cen.14398 Text en © 2020 The Authors. Clinical Endocrinology published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Original Articles
Ekbom, Kerstin
Strandqvist, Anna
Lajic, Svetlana
Hirschberg, Angelica L
Falhammar, Henrik
Nordenström, Anna
Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management
title Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management
title_full Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management
title_fullStr Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management
title_full_unstemmed Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management
title_short Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management
title_sort assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8246868/
https://www.ncbi.nlm.nih.gov/pubmed/33346381
http://dx.doi.org/10.1111/cen.14398
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