Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Pediatrics, Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden.
Clin Psychol Psychother. 2017 Nov;24(6):1370-1376. doi: 10.1002/cpp.2105. Epub 2017 Jul 4.
Direct assessment of the patient perspective is necessary to thoroughly understand patients' experiences of disease. We aimed to examine information from children with short stature on their perceived HrQoL within 5 European countries.
Patients, identified through clinical databases, were approached by their clinicians according to the inclusion criteria regarding a diagnosis of growth hormone deficiency or idiopathic short stature and age requirements. A focus group methodology was applied in 84 children and 112 parents. Based on a category system, individual statements were allocated to domains. To evaluate the emerging topics, qualitative content analysis was conducted. Domains and respective coding frequencies per category were compared across countries and respondents.
The highest number of statements produced by the children and parents were related to social (29%) and emotional needs and concerns (28%). In particular, children stressed their experience of social exclusion but also their perception of social support. Regarding emotional needs, they stated mainly the desire to be taller in order to be less teased by peers. National differences were identified, for example, Swedish (22%) and British (16%) children and their parents (Sweden 26%; Britain 23%) stressed physical HrQoL aspects, whereas German children (21%) strongly focused on treatment aspects, mainly the benefit of treatment.
Comprehensive knowledge of the impact of a chronic condition such as short stature on wellbeing is an important precondition of effective treatment. Because socioemotional topics were rated in all the countries to be most important, interventions aimed at improving HrQoL should target social and emotional responses to short stature.
直接评估患者的观点对于全面了解患者的疾病体验至关重要。我们旨在研究来自 5 个欧洲国家的身材矮小儿童对自身健康相关生活质量（HrQoL）的认知信息。
根据生长激素缺乏症或特发性身材矮小的诊断以及年龄要求，通过临床数据库识别患者，由临床医生根据纳入标准接触患者。采用焦点小组方法对 84 名儿童和 112 名家长进行研究。根据类别系统，将个体陈述分配到各个领域。为了评估新出现的主题，我们进行了定性内容分析。对各国和各受访者的领域以及相应的编码频率进行了比较。
儿童和家长提出的最多的陈述与社会（29%）和情感需求和关注点（28%）有关。特别是，儿童强调了他们的社会排斥体验，但也表达了对社会支持的看法。在情感需求方面，他们主要表示希望长高，以减少被同龄人嘲笑。发现了国家差异，例如，瑞典（22%）和英国（16%）的儿童及其家长（瑞典 26%；英国 23%）强调了身体健康的 HrQoL 方面，而德国儿童（21%）则强烈关注治疗方面，主要是治疗的益处。
全面了解像身材矮小这样的慢性疾病对幸福感的影响是有效治疗的重要前提。由于社会情感话题在所有国家都被评为最重要的问题，因此旨在提高 HrQoL 的干预措施应针对对身材矮小的社会和情感反应。
