van der Kolk Annemarie, Bouwmans Clazien A M, Schawo Saskia J, Buitelaar Jan K, van Agthoven Michel, Hakkaart-van Roijen Leona
Janssen-Cilag BV, PO Box 90240, 5000 LT, Tilburg, the Netherlands,
J Ment Health Policy Econ. 2014 Sep;17(3):119-29.
It has been shown that Attention Deficit Hyperactivity Disorder (ADHD) lowers the Quality of Life (QoL) of patients and their families. Medication as part of the treatment has a favourable effect on symptoms as well as functioning. Evidence on the impact of pharmacological treatment on symptoms of ADHD and the QoL of the patient and their family is still limited. There is a need for further research on QoL in ADHD as well as the relationship between ADHD and the impact on families rather than solely on patients.
Measure QoL of children with ADHD and their parents and explore the association of QoL with treatment response.
A cross-sectional survey was performed using an online questionnaire to collect QoL data of children with ADHD (based on proxy reporting of parents) and their parents in a sample of members of an ADHD parent association. QoL was measured by EQ-5D and KIDSCREEN-10. Treatment response was based on descriptions by experts, based on compliance and functioning.
Analyses were based on 618 questionnaires (treatment responder n=428, treatment non-responder n=190). Mean age of the children was 11.8 years (82.4% male). QoL according to EQ-5D utility was 0.83 and 0.74 for responders and non-responders, respectively (p<0.001). For KIDSCREEN-10 the index was 42.24 and 40.33 for responders and non-responders, respectively (p<0.001). EQ-5D utility scores of the parents were 0.83 on average; no association with their child's treatment response could be established. A significant positive correlation between EQ-5D utility of the children and EQ-5D utility of the parents (R2=0.207, p<0.001) was found. The association between treatment response and children's QoL was significantly influenced by age category, having a sibling with ADHD, and presence of comorbidity.
Strengths of this study are its sample size and the inclusion of QoL of parents, which has not been reported simultaneously before. The facts that data were derived from members of the ADHD parent association, the data for children were based on parents' report, and lack of possibility for confirmation of the clinical diagnosis are the main study limitations.
QoL of children with ADHD was shown to be significantly positively associated with response to treatment and negatively affected by comorbidity. In determining the treatment effects in ADHD, QoL and family overall well-being should be a standard consideration as well as an integrated part of health policy discussions on ADHD.
Policymakers in the field of ADHD should focus on QoL of the patient, but also on the broader effects of effective treatment on the well-being of the parents.
Suggestions for further research include the repetition of this study including a control group and obtaining children's self-report on QoL and clinicians report on diagnosis.
研究表明，注意力缺陷多动障碍（ADHD）会降低患者及其家庭的生活质量（QoL）。药物治疗作为治疗的一部分，对症状和功能有积极影响。关于药物治疗对ADHD症状以及患者及其家庭生活质量影响的证据仍然有限。需要进一步研究ADHD患者的生活质量，以及ADHD与对家庭影响之间的关系，而不仅仅关注患者本身。
测量ADHD儿童及其父母的生活质量，并探讨生活质量与治疗反应之间的关联。
采用在线问卷进行横断面调查，收集ADHD家长协会成员样本中ADHD儿童（基于家长代理报告）及其父母的生活质量数据。生活质量通过EQ-5D和儿童生活质量量表-10（KIDSCREEN-10）进行测量。治疗反应基于专家根据依从性和功能的描述。
分析基于618份问卷（治疗有反应者n = 428，治疗无反应者n = 190）。儿童的平均年龄为11.8岁（82.4%为男性）。根据EQ-5D效用值，有反应者和无反应者的生活质量分别为0.83和0.74（p < 0.001）。对于儿童生活质量量表-10，有反应者和无反应者的指数分别为42.24和40.33（p < 0.001）。父母的EQ-5D效用得分平均为0.83；无法确定其与孩子治疗反应之间的关联。发现儿童的EQ-5D效用值与父母的EQ-5D效用值之间存在显著正相关（R2 = 0.207，p < 0.001）。治疗反应与儿童生活质量之间的关联受到年龄类别、有患ADHD的兄弟姐妹以及合并症的显著影响。
本研究的优点是样本量以及纳入了父母的生活质量，此前尚未同时报告过。本研究的主要局限性在于数据来自ADHD家长协会成员、儿童数据基于家长报告，以及无法确认临床诊断。
ADHD儿童的生活质量与治疗反应呈显著正相关，并受到合并症的负面影响。在确定ADHD的治疗效果时，生活质量和家庭整体幸福感应作为标准考量因素，也是ADHD健康政策讨论的一个组成部分。
ADHD领域的政策制定者应关注患者的生活质量，同时也应关注有效治疗对父母幸福感的更广泛影响。
进一步研究的建议包括重复本研究并纳入对照组，获取儿童关于生活质量的自我报告以及临床医生关于诊断的报告。
