Unmet needs associated with attention-deficit/hyperactivity disorder in eight European countries as reported by caregivers and adolescents: results from qualitative research

Abstract

Introduction: 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.

Objective: The objective of this study was to explore the unmet needs of children/adolescents with ADHD and their caregivers in eight European countries.

Methods: 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.

Results: 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 %).

Conclusions: 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.

Fig. 1

Remaining symptoms on medication. Adolescent and caregiver quotes regarding the continuation of symptoms while on medication. The most frequently reported symptom remaining while on medication was ‘Inattention’

Fig. 2

Difficulty with school. Adolescent and caregiver quotes on school-related difficulties associated with attention-deficit\hyperactivity disorder. ‘Problems with exams/schoolwork’ was the most frequently reported issue for both cohorts

Fig. 3

Impact on activities and social life. Adolescent and caregiver quotes regarding the attention-deficit/hyperactivity disorder-related impacts on a child’s social life and activities. ‘Difficulty with friendships’ was most commonly reported

Fig. 4

Impact on family life, Adolescent and caregiver quotes regarding attention-deficit/hyperactivity disorder-related impacts on family relationships. While both the caregivers and adolescents frequently reported the ‘Relationship between caregiver/child’ and ‘Relationship between siblings’ as important impacts on family life, the caregivers frequently reported more general ‘Stress on the household’

Fig. 5

Treatment concerns. Adolescent and caregiver quotes relating to taking attention-deficit/hyperactivity disorder medication. While caregivers were most concerned about ‘General concerns about taking medication’, ‘Future/long-term effects’, and ‘adverse effects’, the adolescents were most concerned about ‘efficacy’ and ‘adverse effects’