希腊儿童每日接受生长激素治疗的生活质量和治疗负担。

IF 2.9 3区 医学 Q2 ENDOCRINOLOGY & METABOLISM
Endocrine Pub Date : 2025-09-01 Epub Date: 2025-06-09 DOI:10.1007/s12020-025-04269-w
Athanasios Christoforidis, Fotini-Eleni Karachaliou, Assimina Galli-Tsinopoulou, Dionisios Chrysis, Christina Kanaka-Gantenbein, Evangelia Baxevanidi, Ioannis Skiadas, Oresteia Zisimopoulou, Apostolia Poimenidou, Dimitrios Tsilakis, Elpis-Athina Vlachopapadopoulou
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引用次数: 0

摘要

目的:本研究旨在评估希腊患者及其护理人员的儿童生长激素缺乏负担,包括与健康相关的生活质量(HRQoL)、重组人生长激素(rhGH)治疗的影响和疾病管理。方法:在这项横断面研究中,对4-17岁接受rhGH治疗至少12个月的pGHD患者及其护理人员进行了生活质量问卷调查(QoLISSY)和GHD生活干扰(LIQ-GHD)。结果:本研究包括250名患者及其护理人员。患者和护理人员报告的QoLISSY总分平均(±SD)分别为80.93(±14.63)分和76.32(±17.68)分。与护理者相比,≥8岁的患者在总领域和情绪领域得分较高,而年龄在0 ~ 12岁的患者在治疗领域得分较低。治疗负担主要由注射计划难易程度、生活干扰程度和继续LIQ-GHD域意愿构成,平均(±SD)评分分别为19.88(±22.02)、19.36(±18.39)和19.25(±19.60)分。总体人群的治疗依从性是令人满意的。≥8岁的患者比年轻患者错过更多的注射。结论:希腊每日接受rhGH治疗的患者及其护理人员HRQoL良好,治疗负担轻;然而,在儿童和照顾者群体中观察到差异。考虑到青少年依从性下降,应强调与患者和护理人员协商,以确定问题并相应地解决问题。最后,需要考虑可以提高依从性的替代治疗方案。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Quality of life and treatment burden of children receiving daily growth hormone treatment in Greece.

Purpose: This study aimed to assess the paediatric growth hormone deficiency burden in Greek patients and their caregivers regarding the health-related quality of life (HRQoL), impact of recombinant human growth hormone (rhGH) treatment, and disease management.

Method: In this cross-sectional study, Quality of Life in Short Stature Youth (QoLISSY) and Life Interference for GHD (LIQ-GHD) questionnaires were administered to both patients with pGHD aged 4-17 years receiving rhGH for minimum 12 months and their caregivers.

Results: This study included 250 patients and their caregivers. The mean ( ± SD) total QoLISSY scores were 80.93 (±14.63) and 76.32 (±17.68) reported by patients and caregivers, respectively. Patients ≥ 8 years scored higher in total and emotional domains compared to caregivers, whereas the treatment domain was lower in patients > 12 years versus caregivers. Ease of injection schedule, life interference, and willingness to continue LIQ-GHD domains mainly comprised treatment burden, with mean (±SD) scores of 19.88 (±22.02), 19.36 (±18.39) and 19.25 (±19.60), respectively. Treatment adherence in the overall population was satisfactory. Patients ≥ 8 years missed more injections than younger individuals.

Conclusion: A good HRQoL and a mild treatment burden were reported by Greek patients receiving daily rhGH and their caregivers; however, variability was observed within children's and caregivers' groups. Considering the decreased compliance during adolescence, emphasis should be given to consultations with patients and caregivers to identify issues and address them accordingly. Finally, there is a need to consider alternative treatment regimens which could improve adherence.

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来源期刊
Endocrine
Endocrine ENDOCRINOLOGY & METABOLISM-
CiteScore
6.50
自引率
5.40%
发文量
295
审稿时长
1.5 months
期刊介绍: Well-established as a major journal in today’s rapidly advancing experimental and clinical research areas, Endocrine publishes original articles devoted to basic (including molecular, cellular and physiological studies), translational and clinical research in all the different fields of endocrinology and metabolism. Articles will be accepted based on peer-reviews, priority, and editorial decision. Invited reviews, mini-reviews and viewpoints on relevant pathophysiological and clinical topics, as well as Editorials on articles appearing in the Journal, are published. Unsolicited Editorials will be evaluated by the editorial team. Outcomes of scientific meetings, as well as guidelines and position statements, may be submitted. The Journal also considers special feature articles in the field of endocrine genetics and epigenetics, as well as articles devoted to novel methods and techniques in endocrinology. Endocrine covers controversial, clinical endocrine issues. Meta-analyses on endocrine and metabolic topics are also accepted. Descriptions of single clinical cases and/or small patients studies are not published unless of exceptional interest. However, reports of novel imaging studies and endocrine side effects in single patients may be considered. Research letters and letters to the editor related or unrelated to recently published articles can be submitted. Endocrine covers leading topics in endocrinology such as neuroendocrinology, pituitary and hypothalamic peptides, thyroid physiological and clinical aspects, bone and mineral metabolism and osteoporosis, obesity, lipid and energy metabolism and food intake control, insulin, Type 1 and Type 2 diabetes, hormones of male and female reproduction, adrenal diseases pediatric and geriatric endocrinology, endocrine hypertension and endocrine oncology.
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