Evaluating functional outcomes in adolescents with attention-deficit/hyperactivity disorder: development and initial testing of a self-report instrument

Abstract

BackgroundEngaging adolescents in decisions about their health may enhance their compliance with treatment and result in better health outcomes. Treatment outcomes in attention-deficit/hyperactivity disorder (ADHD) are rarely evaluated from the adolescents’ point of view. There is also concern that adolescents with ADHD may not have insight about the impacts of their disease. This article describes research conducted to understand the experiences of adolescents with ADHD and how the research was used to develop an adolescent self-report instrument.MethodsThis research involved an iterative process to ensure content validity and was conducted in the following stages: concept identification from literature reviews and interviews with teachers and clinicians; concept elicitation interviews with adolescents with ADHD and their caregivers, review of existing instruments; development of a new instrument and cognitive interviews. Experts in instrument development and translation and clinical practitioners in ADHD also participated.ResultsA conceptual framework to measure the impact of ADHD on adolescent functioning identified from concept identification research informed concept elicitation interviews with 60 adolescents with ADHD and their primary caregivers. In the interviews, adolescents discussed difficulties with performing activities in various contexts: school, home, leisure activities and social interactions. Caregivers provided additional insights. The instrument review revealed that none of the existing instruments were suitable to collect data on the elicited concepts; therefore, a new instrument was developed. Revisions were made to the format and content of the instrument (a daily diary) based on feedback received from cognitive testing with 15 adolescents.ConclusionsOur research helped to obtain a comprehensive understanding of the impacts of ADHD on adolescent functioning, to inform the development of a new instrument for measuring outcomes. Adolescents were able to discuss the impact of ADHD on their lives in concept elicitation interviews and report the impacts of ADHD on a self-report instrument. The new instrument developed to reflect the perspective of adolescents with ADHD can be used to supplement outcome assessments in clinic and research settings. Scientific advocacy for the use of such measures can be valuable to measure outcomes meaningful to adolescents with ADHD and the clinical community.

<p>Review of Clinical Outcome Assessments in Pediatric Attention-Deficit/Hyperactivity Disorder</p>

“…Participants were referred by clinicians in the San Juan metropolitan area. Individual semistructured interviews (n=40) 3 focus groups (n=20) were conducted with a different cohort of participants (ie, not those who had been previously interviewed) Top 10 concepts for good QoL: 1) to feel able to accomplish goals; 2) to have a good attitude towards others; 3) to get good grades; 4) to respect others/not offend others; 5) to pay attention/concentrate at school; 6) to do things/participate in activities with others; 7) to behave well with others/not be rude; 8) to avoid looking for or getting in trouble; 9) to be healthy/to have good physical health; and 10) to not do things in a rush/to do them slowly Socialization=most prevalent focus group theme Being able to practice sports was most important for good QoL in interviews Believed not having a mental health condition would improve QoL N/A Dewey et al 15 To investigate HRQoL and peer relationships in adolescents with DCD and ADHD 44 adolescents in Canada (aged 11–18) recruited from a cohort study examining genetics and neurobiology of motor and attention problems ADHD only: n=9 DCD only: n=9 ADHD+DCD: n=10 Normally developing: n=19 Semistructured interviews exploring various aspects of HRQoL Most participants in ADHD-only group reported only enjoying nonsedentary activities (eg, playing sports, dancing, swimming) Close friends were a good source of support for all participants ADHD participants reported feeling alone, lonely, ignored, left out, or marginalized (as compared with typically developing peers) N/A Hareendran et al 16 To describe the experience of living with ADHD from the perspective of adolescents and their caregivers, for use in the creation of a new self-report instrument 3 teachers who had worked with students with ADHD 60 adolescents (aged 13–17) with a clinician- confirmed diagnosis of ADHD No other Axis I or II conditions (per DSM-IV) Stable off medication for 1 week (if stimulant)–4 weeks (if nonstimulant) or on medication for at least 4 weeks 60 primary caregivers (age 18+) of an adolescent with ADHD Individual interviews with teachers Individual interviews with adolescents Individual interviews with caregivers Interviews with adolescents and caregivers together (questions were addressed to adolescents first, then to caregivers to provide additional detail) Difficulties wit...…”

Predictors of Quality of Life and Symptom Severity in Attention Deficit/Hyperactivity Disorder

“…The most commonly affected areas, according to both the patients and their caretakers, are the physical and psychosocial (emotional, social and school) domains of QoL. 19 Hareendran et al 4 found that adolescents with ADHD reported significant functional impairments associated with their condition, especially with regard to school, home, leisure activities and social interactions.…”

“…2 ADHD is characterized by symptoms of inattention, hyperactivity and impulsivity, with onset before age 12, which often continue into adolescence and adulthood, in one of three forms of clinical presentation: combined, predominantly inattentive, and predominantly hyperactive/impulsive (APA, 2013). According to expert opinion 3 and patients themselves 4 the most common functional impairments in ADHD are associated with neuropsychological performance (especially attention) 3 school performance and social functioning. 3,4 The presence of neuropsychological impairments in patients with ADHD relative to control subjects is corroborated by studies involving neuropsychological assessment, especially of the executive functions.…”

“…12 Adolescents with ADHD report several difficulties related to school, home, leisure and social activities, corroborating the reports of their caregivers. 4 However, these issues have only been investigated through correlational or association studies, precluding the identification of causal relationships between the variables studied.…”

Untitled

“…According to expert opinion 3 and patients themselves 4 the most common functional impairments in ADHD are associated with neuropsychological performance (especially attention) 3 school performance and social functioning. 3,4 The presence of neuropsychological impairments in patients with ADHD relative to control subjects is corroborated by studies involving neuropsychological assessment, especially of the executive functions. [5][6][7] However, short-term memory is the only cognitive function to have shown a specific association with the severity of hyperactivity symptoms.…”