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Online ISSN: 1099-176X    Print ISSN: 1091-4358
The Journal of Mental Health Policy and Economics
Volume 17, Issue 3, 2014. Pages: 119-129
Published Online: 1 September 2014

Copyright © 2014 ICMPE.


 

Association between Quality of Life and Treatment Response in Children with Attention Deficit Hyperactivity Disorder and their Parents

Annemarie van der Kolk,1 Clazien A.M. Bouwmans,2 Saskia J. Schawo,2 Jan K. Buitelaar,3 Michel van Agthoven, 4  Leona Hakkaart-van Roijen2

1Radboud University Medical Centre, Donders Institute for Brain, Cognition and Behavior, Department of Cognitive Neuroscience, Nijmegen, the Netherlands and Janssen-Cilag BV, Tilburg, the Netherlands
2Institute for Medical Technology Assessment (iMTA), Rotterdam, the Netherlands
3Radboud University Medical Centre, Donders Institute for Brain, Cognition and Behavior, Department of Cognitive Neuroscience and Karakter Child and Adolescent Psychiatry University Centre, Nijmegen, the Netherlands
4Janssen-Cilag BV, Tilburg, the Netherlands

* Correspondence to: Annemarie van der Kolk, Janssen-Cilag BV, PO Box 90240, 5000 LT, Tilburg, the Netherlands.
Tel.: +31-6-158 38 604
Fax: +3131-13-583 7300
E-mail: avdkolk@its.jnj.com

Source of Funding: The study was directly funded by Janssen-Cilag BV, Tilburg, the Netherlands, pharmaceutical companies of Johnson & Johnson. LH, CB and SS have no conflicts of interest, MA and AK are employees of Janssen-Cilag BV, and MA is also stock shareholder of Johnson & Johnson. JB has been in the past three years a consultant to / member of advisory board of / and / or speaker for Janssen-Cilag, Eli Lilly, Bristol-Myers Squibb, Schering Plough, UCB, Shire, Novartis and Servier. He is not an employee of any of these companies, nor a stock shareholder of these companies. He has no other financial or material support, including expert testimony, patents, and royalties.

Abstract

Attention Deficit Hyperactivity Disorder(ADHD) lowers the Quality of Life (QoL) of patients and their families. Evidence on the impact of pharmacological treatment on symptoms of ADHD and the QoL of the patient and their family is still limited. QoL of children with ADHD and their parents was measured by EQ-5D and KIDSCREEN-10and the association of QoL with treatment response was explored by a cross-sectional survey. 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). 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.

 

Background: 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.

Aims of the Study: Measure QoL of children with ADHD and their parents and explore the association of QoL with treatment response.

Methods: 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.

Results: 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.

Discussion: 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.

Implications for Health Care Provision and Use: 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.

Implications for Health Policies: 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.

Implications for Further Research: 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.

Received 24 March 2014; accepted 14 July 2014

Copyright 2014 ICMPE