Results From A European Caregiver Survey Highlight The Impact Of Attention Deficit Hyperactivity Disorder (ADHD) On The Child And The Family

Main Category: ADHD
Also Included In: Pediatrics / Children's Health;  Psychology / Psychiatry;  Mental Health
Article Date: 27 May 2009 - 4:00 PST

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Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced results of a European survey that found a child's Attention Deficit Hyperactivity Disorder (ADHD) symptoms at school were a key concern for parents, yet outside of school their child's ADHD also had significant impact on parents' personal time.1 The survey also revealed key findings surrounding parents' role in assessment and treatment for their child.1 Additionally, the survey suggested that informational needs may not be met adequately for these children with ADHD and their families.1 Conducted in partnership with ADHD advocacy groups in four EU countries, the survey analysed parental impressions surrounding the impact of ADHD on their child, themselves and their family, as well as their child's ADHD treatment plan.

In the survey, nearly 50 percent of parents across Germany, Italy, Spain and the UK indicated that they played a key role in determining whether their child had ADHD symptoms requiring assessment.1 Parents also reported being most concerned about their child's ADHD symptoms at school (67 percent), compared with ADHD symptoms at home (17 percent),1 and that medication was usually taken on school days.1 Further, the survey showed that most parents see a specialist at least twice a year,1 and that parents' level of knowledge about ADHD is directly linked to the support provided at the time of diagnosis.1 However, only half (51 percent) of these respondents felt "well informed" by the informational support provided by the specialist, which included written information for families of children with ADHD, information on local or national support groups, written information for the child with ADHD, and online information.1

"ADHD is a commonly diagnosed psychiatric disorder in children and adolescents.2,3 In fact, ADHD affects an estimated 5.3 percent of children and adolescents 18 years of age or younger worldwide, with large variability between countries,"4 said Dr Myriam Menter, president of ADHD-Europe. "Keeping this in mind, it is important that physicians know how ADHD is currently being perceived by parents of children with the disorder and that they fully understand parents' concerns about managing their child's symptoms. With the help of this survey, physicians can better devise management and support solutions for patients with ADHD and their families."

Impact on family life1

Outside of school, the majority of parents across Europe reported that the impact of ADHD on their personal and family time is a key factor with the disorder. The impact was noted across a number of activities, but in particular ADHD was felt to impact personal time for themselves and time with their partner or with the family.

Involvement in management options1

When asked about ADHD management, most parents (80 percent) felt involved in the decision for their child, and most received their preferred management option. Although parents experienced mixed emotions with having to put their child on medication, the survey showed that many parents became more positive toward the idea of medication because it made a positive improvement in their child's symptoms.

Country-specific findings1

The European Caregiver survey was developed by Shire and conducted in conjunction with ADHD advocacy groups in Germany, Italy, Spain and the UK. Following are differing perceptions on ADHD and its impact on family life seen between these countries:

- Impact at school - The majority of parents across all surveyed markets reported their child's ADHD symptoms to be most concerning when at school, compared to at home or when engaging in social activities. Parents in Italy were most concerned about their child's ADHD symptoms at school (85 percent), followed by parents in Spain (77 percent), Germany (60 percent), and the UK (57 percent).

- Impact on personal time - Whilst parents in all European countries consistently reported the impact on personal time as their greatest factor with their child's ADHD, over three-quarters of Italian parents (77 percent) reported that their personal time is most impacted compared with just over half of Spanish parents (52 percent).

- Time to diagnosis - In the UK, 65 percent of ADHD diagnoses are made within the first two consultations with the doctor or specialist, whereas in other countries the majority of diagnoses occur on the third or subsequent visits.

- Support provided at diagnosis - At diagnosis, only half (51 percent) of European parents reported they were "fairly well informed" or "very well informed" after receiving additional means for support from the physician. Out of the very well informed parents, 79 percent had received written information for families of children with ADHD from the doctor. Parents in the UK believed they were given the most written information, while Italian parents believed they were given the least amount of written information from the specialist.

- Management choice - Most parents in the countries surveyed reported that they felt involved in the management options for their child with ADHD, with the highest involvement seen in Italy (90 percent) and Spain (85 percent), followed by Germany (77 percent) and the UK (74 percent).

About the Survey 1

This European Caregiver survey was conducted via online interviews of 505 parents and caregivers with at least one child diagnosed with ADHD -- 117 were from Germany, 52 were from Italy, 166 were from Spain, and 170 were from the UK. Respondents were recruited by ADHD advocacy groups in each country either by direct invitation or by means of alerts on intranet sites or in newsletters. The ADHD advocacy groups that participated in the development and execution of this survey include:

- ADHS Deutschland in Germany
- Italian ADHD Family Association (AIFA) in Italy
- ADANA Foundation and Federacion Española de Asociaciones de Ayuda al Deficit de Atencion e Hiperactividad (FEAADAH) in Spain
- National Attention Deficit Disorder Information and Support Service (ADDISS), Milton Keynes ADHD (MK ADHD), and Attention Deficit Disorders Uniting Parents (ADDUP) in the UK

This survey was supported by funding from Shire plc.

About ADHD

ADHD is one of the most common psychiatric disorders in children and adolescents.2,3 Worldwide prevalence of ADHD is estimated at 5.3 percent (with large variability), according to a comprehensive systematic review of this topic published in 2007 in the American Journal of Psychiatry.4 In the United States, approximately 7.8 percent of all school-aged children, or about 4.4 million children aged 4 to 17 years, have been diagnosed with ADHD at some point in their lives, according to the Centers for Disease Control and Prevention (CDC).5 The disorder is also estimated to affect 4.4 percent of US adults aged 18-44 based on results from the National Comorbidity Survey Replication.6 When this percentage is extrapolated to the full US population aged 18 and over, approximately 9.8 million adults are believed to have ADHD.7

ADHD is a psychiatric behavioural disorder that manifests as a persistent pattern of inattention and/or hyperactivity-impulsivity that is more frequent and severe than is typically observed in individuals at a comparable level of development.8,9 The specific aetiology of ADHD is unknown and there is no single diagnostic test for this syndrome.3,10 Adequate diagnosis requires the use of medical and special psychological, educational and social resources, utilizing diagnostic criteria such as Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV-TR) or International Classification of Diseases 10 (ICD-10).3,8-10

Although there is no "cure" for ADHD, there are accepted treatments that specifically target its symptoms. Standard treatments include educational approaches, psychological, or behavioural modification, and medication.3,10

1. Data on File, Shire plc, 2008. ADHD Parent and Carer Research Conducted With Advocacy Groups [ADHS Deutschland in Germany; Italian ADHD Family Association (AIFA) in Italy; ADANA Foundation and Federacion Española de Asociaciones de Ayuda al Deficit de Atencion e Hiperactividad (FEAADAH) in Spain; National Attention Deficit Disorder Information and Support Service (ADDISS), Milton Keynes ADHD (MK ADHD), and Attention Deficit Disorders Uniting Parents (ADDUP) in the UK; conducted by Branding Science].

2. Novik TS, Hervas A, Ralson SJ, Dalsgaard S, Pereira RR, Lorenzo MJ, ADORE Study Group. Influence of gender on Attention-Deficit/Hyperactivity Disorder in Europe - ADORE. Eur Child Adolesc Psychiatry [Suppl 1]. 2006; 15: 1/15-1/24.

3. American Academy of Child and Adolescent Psychiatry. Practice Parameter for the Assessment and Treatment of Children and Adolescents With Attention-Deficit/Hyperactivity Disorder. J Am Acad Child Adolesc Psychiatry. 2007;46(7):894-921.

4. Polanczyk G, de Lima MS, Horta BL, Biederman J, Rohde LA. The Worldwide Prevalence of ADHD: A Systematic Review and Metaregression Analysis. Am J Psych. 2007; 164:942-948.

5. Mental Health in the United States: Prevalence of diagnosis and medication treatment for attention-deficit/hyperactivity disorder, United States, 2003. MMWR, September 2, 2005;54(34):842-847.

6. Kessler RC, Adler L, Barkley R, et al. The Prevalence and Correlates of Adult ADHD in the United States: Results From the National Comorbidity Survey Replication. Am J Psychiatry. 2006; 163:716-723 (from a retrospective survey assessing the prevalence, comorbidity, and impairment of adult ADHD in 3199 adults, ages 18 to 44).

7. Annual Estimates of the Population by Selected Age Groups and Sex for the United States: April 1, 2000 to July 1, 2005 (NC-EST2005-02). U.S. Census Bureau. Available at: http://www.census.gov/popest/national/asrh/NC-EST2005-sa.html. Accessed July 10, 2008.

8. Diagnostic and Statistical Manual of Mental Disorders. 4th ed., Text Revision (DSM-IV-TR®). Arlington, VA: American Psychiatric Publishing; 2000:85-93.

9. International Classification of Diseases, 10th ed., (ICD-10). World Health Organization; 2007:Chapter 5,F90. Available here.

10. Taylor E, et al. European Clinical Guidelines for Hyperkinetic Disorder - First Upgrade. Eur Child Adolesc Psychiatry [Supplement 1]. 2004;13:i7-i30.

Source
Shire Plc.