Data Presented About Caregiver Stress While Caring for Children, Teens With ADHD

A large proportion of caregivers with children and adolescents diagnosed with attention-deficit/hyperactivity-disorder (ADHD) perceived that the burden of illness remained high even if the children are on current prescription drug therapy, according to a poster presented at the 2018 Annual Meeting of The American Professional Society of ADHD and Related Disorders (APSARD) in Washington, DC.

However, the burden was perceived to be greatest among those whose children were receiving multiple medications, rather than those managed with once-daily, long-acting medications.

Recruited through patient panels, potential participants completed a screener questionnaire; they were invited to participate in the survey if they were aged at least 18 years, and cared for a child or adolescent aged 6—17 years with ADHD who had been stable on their current stimulant medication for at least 6 months.

Of 2571 respondents to the screener questionnaire, 1823 were terminated and did not take the online, 20-minute survey.

Three hundred caregivers (mean age of children, 13 years) receiving stimulant medications completed the survey.

Long- and short-acting stimulant monotherapy was received by 120 individuals and 90 individuals, respectively, and the remaining 90 individuals received multiple therapies.

There were 100 individuals in each age group (6—11, 12–14, and 15–17 years).

ADHD burden was quantified using a 5-point Likert scale that ranged from 1 (least severe) to 5 (most severe). Respondents were stratified by their child’s current treatment regimen: short-acting or long-acting monotherapy, or multiple medications.

Regardless of current medication, 43% of caregivers reported that their children experienced a significant impact of ADHD on daily activities (ie, responses were within the 2 most severe Likert categories).

Caregivers felt that ADHD had a greater impact on daily activities during the school week (47%) than during the weekend (29%).

The greatest burden fell during after-school activities/afternoon homework, (45%) followed by early morning (42%) and during evening homework/leisure time (41%).

During a typical school week, only 6% of caregivers felt that their child’s medication did not wear off during the day. But 39% reported that medication was most likely to wear off during the period of afterschool activities/afternoon homework.

Proportions of caregivers reporting a high impact of ADHD on their child’s relationships with teachers, friends/classmates, and parents/primary caregivers were qualitatively greater for the 6—11 years age group (41%, 37%, and 34%, respectively) than older age groups (12–14 years: 31%, 31%, and 33%, respectively; 15–17 years: 33%, 36%, and 32%, respectively).

Overall, caregivers reported ADHD burden was highest in children and adolescents receiving multiple therapies (51%), followed by those receiving short-acting (46%) or long-acting (36%) stimulants alone.

More than 40% of caregivers reported frequently feeling overwhelmed and exhausted, feeling stressed, and raising their voice more than they would like. Caregivers reported that their downtime was more frequently affected by their child or adolescent’s ADHD, than any other daily activity.

ADHD frequently affected the emotions and activities of more caregivers of those receiving multiple therapies than of those receiving monotherapy, and of caregivers of those aged 6—11 years of age more than the other 2 age groups.

The study had 2 main limitations—participant recruitment through patient panels may have introduced selection bias, and information reported by caregivers may have been subject to recall bias.

Reference

Robertson B, Khachatryan A, Andreini M, et al. Caregiver survey of the burden of disease in children and adolescents with attention deficit/hyperactivity disorder. Presented at the 2018 Annual Meeting of The American Professional Society of ADHD and Related Disorders; Washington, DC; January 12-14, 2018. Poster 37.