Shimon Ilan, Badiu Corin, Bossowski Artur, Doknic Mirjana, Dzivite-Krisane Iveta, Hána Václav, Kollerova Jana, Natchev Emil, Pfeifer Marija, Szũcs Nikolette, Hey-Hadavi Juliana, Gomez Roy
Rabin Medical Center, Petah Tiqva, Israel.
"C. Davila" University of Medicine and Pharmacy, National Institute of Endocrinology, Bucharest, Romania.
Growth Horm IGF Res. 2019 Jun-Aug;46-47:44-49. doi: 10.1016/j.ghir.2019.06.001. Epub 2019 Jun 7.
Adult growth hormone deficiency (AGHD) is a rare disease characterised by abnormal body composition, reduced strength and exercise capacity and impaired psychological wellbeing. An advisory board of leading Central and Eastern European (CEE) endocrinologists was assembled to gain insights into the status of AGHD care in the CEE region. Topics of discussion included the position of adult hypopituitarism/AGHD in health system priorities, availability and affordability of treatments, awareness of AGHD, practice guidelines used in CEE countries and provisions for long-term care of patients.
Prior to the meeting, the advisors were asked to summarise, using an itemised survey questionnaire, the usual standards of care for patients with AGHD in their country. At the meeting, the panel of experts discussed the findings and thereby elucidated similarities and differences among CEE countries; these were compared with international guideline-recommended practices for AGHD.
All CEE countries involved reported having some type of infrastructure in place for care of patients with GHD transitioning from adolescence to adulthood. Most countries reported having at least one specialist centre for patients with AGHD. The main variations across the region included initial entry into healthcare systems, tests required to confirm AGHD diagnosis and medication reimbursement by health authorities. Most CEE countries relied on international society-led guidelines, while some countries have developed national guidelines.
The CEE Adult Endocrinology Advisory Board meeting recognised considerable diversity in the care and patient pathways for AGHD across CEE countries. Additional work is needed to optimise care of patients with AGHD in the CEE region.
成人生长激素缺乏症(AGHD)是一种罕见疾病,其特征为身体成分异常、力量和运动能力下降以及心理健康受损。组建了一个由中东欧(CEE)顶尖内分泌学家组成的咨询委员会,以深入了解中东欧地区AGHD的治疗现状。讨论的主题包括成人垂体功能减退症/AGHD在卫生系统优先事项中的地位、治疗的可及性和可负担性、对AGHD的认知、中东欧国家使用的实践指南以及患者的长期护理规定。
在会议召开之前,要求顾问们使用一份分项调查问卷总结本国AGHD患者的常规护理标准。在会议上,专家小组讨论了调查结果,从而阐明了中东欧国家之间的异同;并将这些与AGHD的国际指南推荐做法进行了比较。
所有参与的中东欧国家均报告称,拥有某种类型的基础设施,用于照顾从青少年过渡到成年的生长激素缺乏症患者。大多数国家报告称至少有一个针对AGHD患者的专科中心。该地区的主要差异包括进入医疗系统的初始环节、确诊AGHD所需的检查以及卫生当局的药物报销情况。大多数中东欧国家依赖国际社会主导的指南,而一些国家已经制定了国家指南。
中东欧成人内分泌学咨询委员会会议认识到中东欧国家在AGHD的护理和患者就医途径方面存在相当大的差异。需要开展更多工作来优化中东欧地区AGHD患者的护理。