Objectives

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.

Design

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.

Results

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.

Conclusion

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.

中文翻译：

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CEE地区的成人生长激素缺乏症：患者途径的异质性。

目标

成人生长激素缺乏症（AGHD）是一种罕见的疾病，其特征在于机体组成异常，力量和运动能力下降以及心理健康受损。聚集了中欧和东欧（CEE）内分泌专家的咨询委员会，以深入了解CEE地区AGHD护理的状况。讨论的主题包括成人垂体功能低下症/ AGHD在卫生系统优先级中的位置，治疗的可获得性和可负担性，对AGHD的认识，中东欧国家所使用的实践指南以及对患者的长期护理的规定。

设计

在会议之前，要求顾问使用逐项调查问卷汇总其国家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。将这些与针对AGHD的国际指南推荐做法进行了比较。

结果

所有参与的中欧和东欧国家都报告说已经建立了某种类型的基础设施，以照顾GHD从青春期过渡到成年期的患者。大多数国家报告说至少有一个专门的AGHD患者专科中心。该地区的主要变化包括最初进入医疗系统，确认AGHD诊断所需的测试以及卫生当局对药物的报销。大多数中欧和东欧国家都依靠国际社会主导的准则，而一些国家已经制定了国家准则。

结论

CEE成人内分泌学咨询委员会会议认识到，在整个CEE国家中，AGHD的护理和患者途径差异很大。需要进行其他工作来优化CEE地区AGHD患者的护理。