van Dongen Nadine, Kaptein Ad A
Patient Intelligence Panel Health Ltd, London, United Kingdom.
Patient Prefer Adherence. 2012;6:547-53. doi: 10.2147/PPA.S33157. Epub 2012 Jul 25.
We evaluated the opinions of parents in The Netherlands concerning treatment of their children with growth hormone, and examined beliefs and perceptions about treatment and quality of health care communication and support.
An Internet survey was completed by 69 parents who had children prescribed growth hormone and were part of the Patient Intelligence Panel. Acceptance of the diagnosis and treatment was investigated with reference to four topics, ie, search and quality of information, involvement in decision-making process, operational aspects, and emotional problems and support.
Among the parents surveyed, 48% reported a lack of freedom to choose the type of growth hormone device that best suited their needs, 92% believed that their children (and they themselves) would benefit if the children self-administered growth hormone, and 65% believed training to support self-administration would be helpful. According to 79%, the availability of support from another parent with experience of treating their own child with growth hormone, alongside their doctor, would be valuable. Thirty-seven percent of the parents indicated that their children felt anxious about administration of growth hormone, and 83% of parents would appreciate psychological support to overcome their anxiety. An increase in reluctance to receive treatment with growth hormone was observed by 40% of parents after the children reached puberty, and 57% of these parents would appreciate psychological support to overcome this reluctance.
Understanding how growth hormone treatments and their implications are perceived by parents is a first step towards addressing quality of growth hormone treatment, which may be instrumental in improving adherence. The data show a need for support and involvement of parents in the process of choosing a growth hormone device. This decision-making process may be instrumental in improving acceptance and diminishing emotional problems for children using growth hormone.
我们评估了荷兰父母对于其子女接受生长激素治疗的看法，并研究了他们对治疗、医疗保健沟通及支持质量的信念和认知。
69位为子女开具生长激素处方且属于患者情报小组的父母完成了一项网络调查。参照四个主题，即信息的查找与质量、参与决策过程、操作方面以及情感问题与支持，对诊断和治疗的接受度进行了调查。
在接受调查的父母中，48%报告称在选择最适合自身需求的生长激素装置类型方面缺乏自主性，92%认为如果子女自行注射生长激素，他们（及其子女）会从中受益，65%认为支持自行注射的培训将会有所帮助。79%的人认为，除医生之外，有其他家长分享用生长激素治疗自家孩子的经验并提供支持会很有价值。37%的父母表示其子女对注射生长激素感到焦虑，83%的父母希望获得心理支持以克服焦虑情绪。40%的父母表示，孩子进入青春期后，他们对接受生长激素治疗的抵触情绪有所增加，其中57%的父母希望获得心理支持以克服这种抵触情绪。
了解父母对生长激素治疗及其影响的看法是提高生长激素治疗质量的第一步，这可能有助于提高依从性。数据表明，在选择生长激素装置的过程中需要父母的支持和参与。这一决策过程可能有助于提高接受度，并减少使用生长激素的儿童的情感问题。
