ESPE Abstracts (2022) 95 LB20

ESPE2022 Poster Category 1 Late Breaking (25 abstracts)

A Structured Education Program on Hormonal Control and Quality of Life in Congenital Adrenal Hyperplasia: a study in Indonesia

Agustini Utari 1,2 , Annastasia Ediati 1,3 , Achmad Zulfa Juniarto 1 , Mahayu Dewi Ariani 1 , Saskia Mostert 4 , Mei Neni Sitaresmi 5 , Antonius E Van Herwaarden 6 , Stenvert LS Drop 7 , Hedi L Claahsen-van der Grinten 8 & Sultana MH Faradz 1

1Center for Biomedical Research (CEBIOR), Faculty of Medicine, Diponegoro University, Semarang, Indonesia; 2Division of Pediatric Endocrinology, Department of Pediatrics, Faculty of Medicine, Diponegoro University, Semarang, Indonesia; 3Faculty of Psychology, Diponegoro University, Semarang, Indonesia; 4Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Vrije Universiteit, Amsterdam, Netherlands; 5Department of Child Health, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada/Dr. Sardjito Hospital, Yogyakarta, Indonesia; 6Department of Laboratory Medicine, Radboud University Medical Center, Nijmegen, Netherlands; 7Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands; 8Division of Pediatric Endocrinology, Amalia Children’s Hospital, Radboud University Medical Center, Nijmegen, Netherlands

Background: Classic Congenital Adrenal Hyperplasia (CAH) needs life-long treatment of glucocorticoids. Compliance with long-term medication is still challenging, particularly in developing countries. However, there has been no prospective study about the strategy to improve compliance in CAH and its relationship with hormonal control and quality of life (QoL) in CAH, especially in underprivileged countries such as Indonesia. This study aimed to determine the relationship between compliance and hormonal treatment, Qol, and parental stress of CAH patients.

Methods: This study is a randomized pretest-posttest control group study to evaluate the compliance and quality of life in a one-year CAH structured education program. Both groups received the same education program every three months. Additionally, the intervention group received medication diaries with reminder messages using phone calls and short text messages at regular intervals (every month). We assessed treatment compliance by counting pills and the questionnaires; the QoL using PedsQl, and the parental stress using the Parental Stress Scale (PSS). We measured salivary 17-hydroxyprogesterone and androstenedione using LCMSMS to evaluate hormonal control every 3 months. The differences between the two groups in hormonal profile, quality of life, and PSS scores were analyzed by Mann-Whitney U Test and Paired T-test.

Results: Fifty patients with CAH (age range 0-20 years) were included in the intervention group of the study (n=23) and the control group (n=27). A good compliance increased from 30.4% at the baseline to 42.9% at the end of the visit in the diary group. Based on androstenedione levels, the undertreatment status decreased from 67.3% in the first visit to 50% at the end, whereas the overtreatment status increased from 12.2% at the However, the difference between undertreatment vs. adequate and overtreatment before and after a year of education program showed no statistical difference (P=0.564). The PSS of the mother decreased, and the median PSS score of the father declined gradually from the first until the last visit. The median score of physical health subscale of PedQL was significantly improved after the education program in mother proxy reports (P=0.022), but not in the father proxy report.

Conclusions: The structured education program improved the hormonal control in CAH as well as dimensions of physical health in the quality of life and reduced parental stress. These results are a strong encouragement to improve CAH education in resource limited settings.

Volume 95

60th Annual ESPE (ESPE 2022)

Rome, Italy
15 Sep 2022 - 17 Sep 2022

European Society for Paediatric Endocrinology 

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