生长激素缺乏症儿童和青少年及其照顾者的生活质量：一项义大利调查。
Quality of life in children and adolescents with growth hormone deficiency and their caregivers: an Italian survey.
机构信息
Paediatric Clinic and Endocrinology, IRCCS Istituto Giannina Gaslini, Genoa, Italy.
Department of Neuroscience, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health, University of Genoa, Genoa, Italy.
出版信息
J Endocrinol Invest. 2023 Dec;46(12):2513-2523. doi: 10.1007/s40618-023-02106-3. Epub 2023 May 20.
PURPOSE
The aim of this study was to produce evidence on quality of life (QoL) among Italian growth hormone deficiency (GHD) children and adolescents treated with growth hormone (GH) and their parents.
METHODS
A survey was conducted among Italian children and adolescents aged 4-18 with a confirmed diagnosis of GHD and treated with GH therapy and their parents. The European Quality of Life 5 Dimensions 3 Level Version (EQ-5D-3L) and the Quality of Life in Short Stature Youth (QoLISSY) questionnaires were administered between May and October 2021 through the Computer-Assisted Personal Interview (CAPI) method. Results were compared with national and international reference values.
RESULTS
The survey included 142 GHD children/adolescents and their parents. The mean EQ-5D-3L score was 0.95 [standard deviation (SD) 0.09], while the mean visual analogue scale (VAS) score was 86.2 (SD 14.2); the scores are similar to those of a reference Italian population aged 18-24 of healthy subjects. As for the QoLISSY child-version, compared to the international reference values for GHD/ idiopathic short stature (ISS) patients, we found a significantly higher score for the physical domain, and lower scores for coping and treatment; compared to the specific reference values for GHD patients, our mean scores were significantly lower for all domains except the physical one. As for the parents, we found a significantly higher score for the physical domain, and a lower score for treatment; compared to reference values GHD-specific, we found lower score in the social, emotional, treatment, parental effects, and total score domains.
CONCLUSIONS
Our results suggest that the generic health-related quality of life (HRQoL) in treated GHD patients is high, comparable to that of healthy people. The QoL elicited by a disease specific questionnaire is also good, and comparable with that of international reference values of GHD/ISS patients.
目的
本研究旨在提供意大利生长激素缺乏症（GHD）儿童和青少年使用生长激素（GH）治疗后的生活质量（QoL）证据，并评估其父母的生活质量。
方法
本研究对意大利年龄在 4-18 岁，确诊为 GHD 并接受 GH 治疗的儿童和青少年及其父母进行了一项调查。2021 年 5 月至 10 月期间，通过计算机辅助个人访谈（CAPI）方法使用欧洲五维健康量表 3 级版（EQ-5D-3L）和矮小青少年生活质量量表（QoLISSY）进行问卷调查。结果与国家和国际参考值进行了比较。
结果
该调查共纳入 142 名 GHD 儿童/青少年及其父母。EQ-5D-3L 平均得分为 0.95（标准差[SD]为 0.09），而视觉模拟量表（VAS）平均得分为 86.2（SD 为 14.2）；这些分数与健康人群中 18-24 岁的意大利参考人群相似。对于 QoLISSY 儿童版本，与国际 GHD/特发性身材矮小（ISS）患者参考值相比，我们发现身体领域的得分显著较高，应对和治疗领域的得分较低；与 GHD 患者特定参考值相比，除身体领域外，我们的平均得分在所有领域均显著较低。对于父母，我们发现身体领域的得分较高，而治疗领域的得分较低；与 GHD 特异性参考值相比，我们在社会、情感、治疗、父母影响和总分领域的得分较低。
结论
我们的结果表明，接受治疗的 GHD 患者的一般健康相关生活质量（HRQoL）较高，与健康人群相当。使用特定疾病问卷得出的生活质量也较好，与 GHD/ISS 患者的国际参考值相当。
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