Objective

It was the aim of this study to evaluate illness-related burdens and support needs of patients with acromegaly to identify hitherto unadressed research questions and to open up avenues for improvements in patient care. This was done by using the focus group approach as a qualitative research method.

Design

Seven patients with acromegaly took part in a focus group moderated by an external medical communication specialist. The discourse focused on topics such as impact of the illness on everyday life, support needs and personal resources. The discussion was recorded and transcribed and analyzed by qualitative content analysis.

Results

Participants reported a huge impact of acromegaly on daily life, ranging from time expenditure for managing their illness, to bodily and mental sequelae and strain caused by physical disfigurement. Patients' coping strategies included family support, physical activities and humor. The participants wished for a sound patient-doctor relationship, more interdisciplinary and holistic treatment, medical rehabilitation services with special knowledge on acromegaly-related morbidity, a stable contact person in the medical process and reliable information material for themselves and their relatives.

Conclusions

The results provide multi-facetted impressions of the overwhelming impact of acromegaly and unmet support needs of the afflicted patients. Further quantitative research is necessary to examine the generalisibility of the present results in order to implement tailored support measures. We suggest to develop standardized questionnaires to explore the prevalence and severity of the addressed problems in a large patient sample and to establish screening instruments to monitor disease burden in clinical practice.

中文翻译：

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肢端肥大症患者的疾病相关负担、个人资源和支持需求：焦点小组分析的结果

客观的

本研究的目的是评估肢端肥大症患者与疾病相关的负担和支持需求，以确定迄今为止尚未解决的研究问题，并为改善患者护理开辟途径。这是通过使用焦点小组方法作为定性研究方法来完成的。

设计

七名肢端肥大症患者参加了由外部医疗交流专家主持的焦点小组。演讲的重点是疾病对日常生活的影响、支持需求和个人资源等主题。通过定性内容分析记录和转录和分析讨论。

结果

参与者报告了肢端肥大症对日常生活的巨大影响，从治疗疾病的时间花费到身体和精神后遗症以及身体毁容引起的劳损。患者的应对策略包括家庭支持、体育活动和幽默。参与者希望建立良好的医患关系、更多的跨学科和整体治疗、具有肢端肥大症相关发病率专业知识的医疗康复服务、医疗过程中稳定的联系人以及为自己和亲属提供可靠的信息材料。

结论

结果提供了肢端肥大症的压倒性影响和受影响患者未满足的支持需求的多方面印象。需要进一步的定量研究来检验目前结果的普遍性，以便实施量身定制的支持措施。我们建议制定标准化的问卷调查，以探索大量患者样本中所解决问题的普遍性和严重性，并建立筛查工具以监测临床实践中的疾病负担。