Hotopp Lena Charlott, Spindler Ulrike Petra, Bach Vivien Angela, Hornemann Frauke, Syrbe Steffen, Andreas Anna, Merkenschlager Andreas, Kiess Wieland, Bernhard Matthias K, Bertsche Thilo, Neininger Martina Patrizia, Bertsche Astrid
Klinik und Poliklinik für Kinder und Jugendliche, Zentrum für pädiatrische Forschung, Universitätsklinikum Leipzig.
Klinik für Allgemeinpädiatrie, Sektion für Neuropädiatrie und Stoffwechselmedizin, Zentrum für Kinder- und Jugendmedizin, Universitätsklinkum Heidelberg.
Klin Padiatr. 2018 Jan;230(1):44-49. doi: 10.1055/s-0043-117960. Epub 2017 Dec 19.
A developmental disorder of a child has a major impact on the affected families' lives. However, data about the parents' perception of the revealing of the diagnosis is scarce.
Parents of children with developmental disorder treated as outpatients in a university hospital were interviewed about the initial medical consultation concerning the diagnosis of their child.
Parents of 210 children agreed to take part in the study. 35/210 (17%) had to be excluded from the study as they were not able to remember the initial medical consultation, or claimed there was either no initial medical consultation or they did not attend it. The diagnosis of developmental disorder was made in median 4 months (Q25/Q75: 0/12; min/max: 0/63) after the parents had noticed the first symptoms. According to the parents, options to support the development of the child were the most frequently addressed topic in the initial medical consultation (119/175, 68%). Some parents wished more empathy (19/175, 11%), and less medical terminology (12/175, 7%). 114/175 (65%) of parents rated the initial medical consultation as "very good" or "good". After their initial medical consultation, 66/175 (38%) of the parents had open questions mainly concerning the prognosis of the disease. Sources of information that were used after the consultation were most often the treating physician (150/175, 86%) and the internet (133/175, 76%).
Generally, parents perceive the initial medical consultation on the developmental disorder of their child well. Nevertheless, many parents state that they had unanswered questions after the consultation. The internet is one of the main sources parents use to answer those questions.
儿童发育障碍对受影响家庭的生活有重大影响。然而，关于父母对诊断结果披露的看法的数据却很少。
对在大学医院门诊接受治疗的发育障碍儿童的父母就其孩子诊断的首次医疗咨询进行了访谈。
210名儿童的父母同意参与研究。其中35/210（17%）因无法回忆起首次医疗咨询，或声称没有首次医疗咨询或未参加而被排除在研究之外。在父母注意到孩子的首个症状后，发育障碍的诊断中位时间为4个月（四分位间距：0/12；最小/最大：0/63）。据父母称，支持孩子发育的选项是首次医疗咨询中最常涉及的话题（119/175，68%）。一些父母希望得到更多的同理心（19/175，11%），以及更少的医学术语（12/175，7%）。114/175（65%）的父母将首次医疗咨询评为“非常好”或“好”。在首次医疗咨询后，66/175（38%）的父母有主要关于疾病预后的未解决问题。咨询后使用的信息来源最常是主治医生（150/175，86%）和互联网（133/175，76%）。
总体而言，父母对孩子发育障碍的首次医疗咨询评价良好。然而，许多父母表示咨询后仍有未解决的问题。互联网是父母用来回答这些问题的主要来源之一。
