Sikirica Vanja, Flood Emuella, Dietrich C Noelle, Quintero Javier, Harpin Val, Hodgkins Paul, Skrodzki Klaus, Beusterien Kathleen, Erder M Haim
Global Health Economics, Outcomes Research and Epidemiology, Shire, Wayne, PA, USA.
Patient. 2015 Jun;8(3):269-81. doi: 10.1007/s40271-014-0083-y.
Attention-deficit/hyperactivity disorder (ADHD) is a neurobehavioral disorder characterized by inattention, impulsivity, and hyperactivity, the levels of which are inappropriately high for an individual's developmental age.
The objective of this study was to explore the unmet needs of children/adolescents with ADHD and their caregivers in eight European countries.
Semi-structured interviews with 38 caregivers of children/adolescents (aged 6-17 years) with ADHD and no or less serious comorbidities and 28 adolescents (aged 13-17 years) with ADHD and no or less serious comorbidities were conducted, audio-recorded, transcribed into English, and coded for analysis.
Caregivers reported their own ADHD-related issues, including making personal accommodations, such as limiting activities and spending extra time/effort caring for their child/adolescent, social impacts, and strained relationships. Medication was generally considered helpful; however, most children experience core ADHD symptoms while on medication (reported by 88 % of caregivers and 100 % of adolescents). Adolescents often reported schoolwork difficulties (96 %) and peer issues (75 %), while caregivers reported school issues (84 %) and peer difficulties (79 %). Caregivers reported minimal ADHD education and community support. Caregivers (29 %) and adolescents (54 %) desired medication that better controlled symptoms but had concerns about being oversubdued. Caregivers reported concerns about adverse effects (21 %).
European caregivers of children/adolescents with ADHD identified multiple unmet needs, which persist despite treatment. Adolescents noted impacts on school and social interactions consistent with caregivers. Future research is needed to quantify the study findings, and, ultimately, ease the impact of ADHD on patients and their caregivers.
注意力缺陷多动障碍（ADHD）是一种神经行为障碍，其特征为注意力不集中、冲动和多动，这些症状的严重程度与个体的发育年龄不相称。
本研究的目的是探索欧洲八个国家中患有ADHD的儿童/青少年及其照顾者未得到满足的需求。
对38名患有ADHD且无或有不太严重共病的儿童/青少年（6 - 17岁）的照顾者以及28名患有ADHD且无或有不太严重共病的青少年（13 - 17岁）进行了半结构化访谈，访谈进行了录音，转录成英文，并进行编码分析。
照顾者报告了他们自己与ADHD相关的问题，包括做出个人调整，如限制活动以及花费额外的时间/精力照顾他们的孩子/青少年、社会影响和紧张的人际关系。药物治疗通常被认为是有帮助的；然而，大多数儿童在服药期间仍会出现ADHD的核心症状（88%的照顾者和100%的青少年报告）。青少年经常报告学业困难（96%）和同伴问题（75%），而照顾者报告学校问题（84%）和同伴困难（79%）。照顾者报告接受的ADHD教育和社区支持极少。照顾者（29%）和青少年（54%）希望有能更好控制症状的药物，但担心会过度抑制。照顾者报告了对不良反应的担忧（21%）。
欧洲患有ADHD的儿童/青少年的照顾者指出了多个未得到满足的需求，这些需求尽管经过治疗仍然存在。青少年指出了对学校和社交互动的影响，这与照顾者的情况一致。需要未来的研究来量化研究结果，并最终减轻ADHD对患者及其照顾者的影响。
