Abstract
Objective:
Attention-deficit/hyperactivity disorder (ADHD) may have a lasting effect on the quality of life (QoL) of children and their parents. Children with ADHD as well as their parents report a lower QoL compared with healthy children and children with chronic diseases such as bronchial asthma. The primary objective of this study was to investigate the changes of QoL of children with ADHD and their parents' subjective well-being before and after starting pharmacotherapy. We used the appropriate KINDL questionnaire for assessing the children's QoL and the World Health Organization (WHO) Big Five Questionnaire for assessing parental well-being.
Methods:
We assessed the QoL and the parental well-being in 60 children and adolescents with ADHD between the ages of 6 and 12 years [mean age 8.7 years, (standard deviation = 1.8)], treated at the Department of Child and Adolescent Psychiatry of the Medical University of Vienna. QoL was rated using the KINDL questionnaires, and parental well-being was assessed using the WHO Big Five Questionnaire (WHO-5) before and after starting pharmacotherapy. We used t-tests and three-way GLM-ANOVA (SPSS, version 22; IBM Corp.) for evaluating the statistical significance of pre–post differences.
Results:
The QoL of the children with ADHD and the subjective well-being of the parents improved significantly after introducing pharmacotherapy.
Conclusions:
Pharmacotherapy is recommended in children with clinically significant ADHD not only because it helps to improve the symptoms of ADHD, but also their QoL and the well-being of their parents.
Introduction
Attention-Deficit/Hyperactivity Disorder (ADHD) is a genetically determined disorder (Thapar and Cooper 2016) characterized by inattention, a decreased ability to remain focused on important tasks, and hyperactivity, restlessness, and impulsivity, a diminished ability to control one's actions (American Psychiatric Association 2013). ADHD is one of the most common psychiatric disorders in childhood and adolescence (Feldman and Reiff 2014; Visser et al. 2014). The disorder also persists into adulthood in 20%–60%, (Polowczyk et al. 2000; Trautmann-Villalba et al. 2001; Sobanski et al. 2008; Schreyer and Hampel 2009; Tischler et al. 2010); therefore, ADHD can be defined as a chronic health condition (Barbaresi et al. 2013). The prevalence of ADHD is about 5.5% in boys (Breuer and Dopfner 2006; Bonekamp and von Salisch 2007; Schreyer and Hampel 2009), 2% in girls, and about 1% to 2% in adults (Fayyad et al. 2007; de Zwaan et al. 2012). Estimates from individual studies have indicated that the global prevalence of ADHD in adults ranges from 1.1% in Australia to 7.3% in France (Polanczyk et al. 2010; Ebejer et al. 2012). ADHD interferes with various aspects of life and leads to substantial impairment of social, academic, and occupational issues (Merrill et al. 2009; Schwebel et al. 2011; American Psychiatric Association 2013).
ADHD does not only adversely affect a patient's life but also his/her social environment. Parents and siblings suffer from the restlessness, and elevated inner drive, the increased volatility, and permanent demands of attention in search of the new (Harpin 2005; Schlack et al. 2007). In addition, they often do not meet the demanded performance at school, cause major intrafamilial difficulties, and considerable problems in integrating into the society. These difficulties may lead to peer rejection and depression (Romanos et al. 2008). Children with ADHD are at increased risk of not meeting their academic and vocational goals, they bear a higher risk of teenage pregnancies (Harpin 2005; Schlack et al. 2007), inconstant partner relations (Huss 2004; Schlack et al. 2007), alcohol and drug abuse, low socioeconomic status (Romanos et al. 2008), and delinquency (Retz et al. 2004; Bundesärztekammer 2005; Schlack et al. 2007).
Having a child with ADHD may promote intrafamilial conflicts leading to dysfunctional parenting practices and thus increasing externalizing behavior (Johnston and Mash 2001; Johnston 2006; Beelmann and Raabe 2007; Beelmann et al. 2007; Jans et al. 2008; Seiffge-Krenke 2008; Schreyer and Hampel 2009) and chronic ADHD (Polowczyk et al. 2000; Trautmann-Villalba et al. 2001; Schreyer and Hampel 2009).
Because patients with ADHD are mostly confronted with severe difficulties in various areas of life (Schöning et al. 2002), and because they often receive negative feedback from their caregivers and peers, they will develop a decreased self-efficacy and a negative self-image. This will reduce their well-being and consequently their quality of life (QoL) (Schöning et al. 2002). Parents of children with ADHD are also at risk of experiencing a reduced (health-related) QoL (Klassen et al. 2004; Mattejat et al. 2005; Schilling et al. 2006; Schreyer and Hampel 2009).
Health-related QoL is a multifactorial construct that focuses on an individual's perception of physical, psychological, and social functioning (Schreyer and Hampel 2009). Previous studies have shown poorer QoL in children with ADHD compared with healthy children and children with other chronic diseases, such as bronchial asthma (Escobar et al. 2005; Huss 2008).
Psychopharmacological treatment of ADHD is effective, mostly leading to rapid improvements of ADHD symptoms (Jans et al. 2008). Psychopharmacological treatment leads to significant improvement of inattention, hyperactivity, and impulsivity (Schwemmle and Ptok 2007). In addition, school performance and social inclusion are improved (Banaschewski et al. 2009; Galera et al. 2014; Giles and Martini 2016). Especially hyperactivity that otherwise is difficult to treat will rapidly improve (Schachar and Tannock 1993; Swanson et al. 1993; Schöning et al. 2002). This will indirectly improve their social skills as well as personal abilities and stabilize their self-esteem (Schwemmle and Ptok 2007).
Previous studies have also demonstrated a positive effect on aggressive and dissocial behaviors related to ADHD medication (Michelson et al. 2001; Sevecke et al. 2005; Remschmidt 2008). Combining medication and behavioral therapy improves ADHD in most areas of life in the children and their parents (Galera et al. 2014; Gaastra et al. 2016; Giles and Martini 2016).
However, “Quality of life” is often neglected in the medical context. Therapies often focus on symptoms and not on the psychological consequences of a disease and its impact on a patient's life. Studies often have reported on the suffering of children with ADHD (Tischler et al. 2010). Since the first publication in 1964, studies on QoL mainly dealt with adult patients, only 13% focused on children's QoL (Ravens-Sieberer 2000).
We, therefore, became interested in studying QoL in children with ADHD and planned a prospective study, hypothesizing that the pharmacological treatment of ADHD would not only improve the ADHD symptomatology in children but also their QoL, and as a consequence, also the life satisfaction of their parents.
Methods
Study sample
A total of 85 treatment-naive children, between the ages of 6 and 12 years, with the clinical diagnosis of ADHD were consecutively recruited between November 2011 and July 2014 at our outpatient clinic. Criteria for study inclusion were the confirmed diagnosis of ADHD and the willingness (written informed consent) to voluntarily participate in our study, including two repeated additional QoL tests in the children and a repeated Big Five Personality tests in the parents. Children with intellectual disability and comorbid psychiatric disorders were not included in the study.
The diagnosis of ADHD was confirmed by an experienced child psychiatrist after a detailed psychiatric examination and in a structured way by psychological testing, including TOVA (The Test of Variables of Attention) (Greenberg et al. 1996); DISYPS-III (Diagnostik-System für psychische Störungen nach ICD-10 und DSM-IV für Kinder und Jugendliche-III) (Döpfner and Görtz-Dorten 2017); CBCL (Child Behavior Checklist) (Arbeitsgruppe Deutsche Child Behavior Checklist 1998a); YSR (Youth Self-Report) (Arbeitsgruppe Deutsche Child Behavior Checklist 1998b); TRF (Teacher's Report Form) (Arbeitsgruppe Deutsche Child Behavior Checklist 1993); HAWIK-IV (Petermann and Daseking 2009), an assessment of the intellectual capacity and the age appropriate KINDL QoL questionnaire (4–7 years and 8–11 years as well as 12–18 years; see Instruments section). The parents were assessed with the World Health Organization (WHO) Big Five Personality Questionnaire (see below). After confirming the diagnosis of ADHD, the children were treated with psychopharmacotherapy (methylphenidate or atomoxetine alone or in combination). The second assessment (only KINDL and WHO Big Five tests) was completed 3–6 months after beginning pharmacological treatment. Twenty-five (29.4%) of the children discontinued the psychopharmacological treatment for various reasons (mostly because of doubts about the particular danger of psychopharmacological treatment and were, therefore, excluded from the study). Finally, 60 children completed the study. Only these children and their parents were included in the final data analysis.
Instruments
The KINDL 4–7 questionnaire consists of six dimensions with two questions per theme, healthiness, general feelings, feelings about oneself, family relations, friends, and school/kindergarten with three grades of answers on a Likert scale (never, sometimes, very often). The KINDL 8–11 years and 12–18 years questionnaire consists of the same dimensions but with four questions per theme and five grades of answers (never, seldom, sometimes, often, all the time) (Sieberer and Bullinger 2000).
The WHO Big Five Personality Questionnaire consists of five questions on the mental well-being of the past 2 weeks. The questions include the following areas: balanced mood and happiness, relaxation, activity and vitality, energy-charged, and interest in things (Psychiatric Research Unit 2000).
Because the number of the study participants was relatively small and because the six dimensions were homogenously distributed, we used summarized mean scores of the self-assessment questionnaires of children between 8 and 11 years and between 12 and 18 years. We calculated the sum values of the scales and a total score. In addition, we transformed the scale ranges to 0–100, higher levels indicating a better QoL.
Because of the lower number of questions in the age group 4–7 years, we assessed only the “Total Quality of Life” (TQL) value.
Statistical evaluation
The results of the KINDL questionnaires were entered into the data matrix of the statistical software IBM SPSS® using the computerized evaluation program developed by Ravens-Sieberer (Ravens-Sieberer et al. 2000).
We used t-tests and 3-way GLM-ANOVA (SPSS, version 22; IBM Corp.) for evaluating the statistical significance of pre–post differences (IBM Corp 2013). We used standard t-tests for repeated measurements to find out differences between the two measurements, accepting significant differences at an alpha level of 0.05.
Evaluating the life satisfaction of the parents, we used the “WHO Big Five Well-being questionnaire.” This questionnaire assesses personality in five dimensions, extraversion versus introversion, agreeableness versus antagonism, conscientiousness versus lack of direction, neuroticism versus emotional stability, and openness versus closeness to experience. For each of the dimensions, the test person chooses one out of six possible answers. We calculated mean values and a summarized mean that was compared between the two sampling points, and, again, compared the means by t-tests for repeated measurements.
The study protocol was approved by the Ethics Committee of the Medical University of Vienna (EK 286/2011).
Results
Study sample
A total of 60 children and adolescents, with the clinically and psychologically tested diagnosis of ADHD, and their parents completed the study. The majority of the participants were boys (65%; n = 39) versus girls (35%; n = 21). The mean age was 8.7 years (standard deviation = 1.8).
QoL of children with ADHD
QoL increased in all dimensions in the children aged between 4 and 7 years (TQL mean: 68.3 before therapy, 79.5 after therapy) and those aged between 8 and 16 years (Table 1). The highest increase after 3–6 months of therapy was observed for “self-esteem” (mean increase 8.8 points), “school” (mean increase 7.0 points), and “psychological well-being” (mean increase 6.9 points).
KINDL Self-Assessment of Total Group
p < 0.050, ** p < 0.010.
Mean values of KINDL dimensions before and 3–6 months after the beginning of pharmacotherapy.
One child did not submit the KINDL self-assessment sheet for follow-up. Because the remaining questionnaires were completely answered, we did not exclude this child from our study. In addition, three children completed the questionnaires for 4–7 years old before therapy. Because these children became 7 years old in the meantime, the questionnaires for 8–11 years old were filled out at the second assessment. Therefore, the number of patients in the study sample varies accordingly.
SD, standard deviation; TQL, total quality of life.
Although total QoL increased in the children aged between 8 and 16 years in all dimensions, the differences were statistically not significant for “physical well-being” (p = 0.349), “family” (p = 0.420), and “friends” (p = 0.179), and, total QoL showed a nonsignificant trend in the children aged 4–7 years (p = 0.079).
Parental big five assessments
The WHO Well-being Big Five Questionnaire assesses the mental health state in the past 2 weeks (Table 2). Comparing the class frequencies before and after therapy, we found constant ratings of psychological well-being in 20 parents of 59 (34%) parents, who returned completely “WHO Big Five Well-being questionnaire” before and after psychopharmacological treatment, in three parents “satisfactory well-being” changed to “very good.” Nine parents initially rated their condition as “very good,” 8 of them rated their well-being 1 level less after 3–6 months of therapy, and one changed to “reduced.” Seven parents who rated their initial well-being as “satisfactory,” changed to “reduced” after therapy. In total 15 parents initially reported to suffer from depression; after therapy, well-being improved in 13 (87%) of these parents. Two parents reported “reduced well-being” after 3–6 months of therapy of their children.
World Health Organization Questionnaire on Well-Being of Parents
Dark gray marked values are values that have improved after the therapy. Light gray marked values are values that have worsened after the therapy.
Bold values are values which remain constant before and after the therapy.
WHO, World Health Organization.
Overall, the parental mental state showed a mixed picture, with more improvements than deteriorations.
Discussion
We found significant improvements of the QoL in nearly all treatment-naive children with ADHD and an improvement of psychological well-being in the majority of their parents after a 3–6 month period of psychopharmacological treatment.
The effect of psychopharmacological treatment in children with ADHD depends on sociodemographic characteristics, for example, age, ethnic background, socioeconomic status, and attitudes toward medication. (Bussing et al. 2003; Ahmed and Aslani 2013; Morgan et al. 2013; Visser et al. 2014; Chan et al. 2016; Coker et al. 2016; Walls et al. 2017). In contrast, the attitude of the physician concerning medication also plays a significant role in the management of childhood ADHD (Anderson et al. 2015). Because of its effectiveness, pediatricians use medication as first-line treatment for ADHD (Rushton et al. 2004; McElligott et al. 2014).
In our study, psychopharmacological treatment was recommended for all patients. Because nearly a third (29.4%) of the study participants terminated the medical treatment before the second assessment, our results are based on the data of the participants, who continued their medical therapy. Adler and Nierenberg (2010) reported that rates for discontinuing medical treatment for ADHD amount to 13.2%–64%.
The results of this study show not only a significant improvement in various aspects 3–6 months after the beginning of treatment, but also an increase of QoL. The highest increases of QoL under medical therapy were observed in the dimensions, “self-esteem,” “school” and “psychological well-being,” and “Total Quality of Life.” The not significant differences in “Total QoL” in the patients aged between 4 and 7 years may have been caused by the relatively low number of children in our sample.
Parental well-being was evaluated using the WHO Well-being Five questionnaire. The most significant changes were observed in parents who reported symptoms of clinical depression.
Parents reporting “satisfactory well-being” improved to “very good well-being,” but a number of parents felt no improvement or even a deterioration of their well-being after medication of their children. This may have been caused by adapting to the benefits of the medication or by other—non-ADHD-related—problems. Mattejat et al. (2005), investigating QoL of children with mental disorders, found that the parents of mentally ill children suffered from a greater burden than their children themselves (Mattejat et al. 2005; Schreyer and Hampel 2009).
Impairments of the parental “psychological well-being” of children with ADHD were also reported by Schilling et al. (2006).
Limitation
Our study, although well planned, bears some limitations: The number of patients in the study was relatively small, especially with respect to the number of patients who completed the study. This may relate to the facts that ADHD as a genetic disorder may also impair the parental continuity in following medical support, that parental concerns about side effects of psychopharmacological treatment (appetite, may impede continuation, especially adolescents have problems with adherence to medication) could have influenced adherence to medication. Our patients were collected at a general outpatient service; therefore, the initial motivation to accept medication may have been related to a threatening school situation that ameliorated with medication. This may have influenced both the QoL effects and the dropout rate.
Because of limited consulting time in the general outpatients' service, not all aspects of medication and motivation to continue medication may have been discussed in detail. A different setting, for example, a special outpatient clinic for children with ADHD could have helped to reduce the number of dropout patients.
Further limitations of this study are the absence of a control group and the lack of controlled medication treatment; 25 patients have dropped out of the study due to medication adherence problems.
In this study, the WHO Big Five Personality Questionnaire was used to assess the mental well-being of the parents; unfortunately, this scale has not been extensively used in ADHD families before. However, previous other studies also used the WHO Big Five Personality Questionnaire as it is a highly validated scale (Levy and Lounsbury 2011; Zhang et al. 2014; Ballester-Arnal et al. 2015; Soto 2015) Overall, these caveats make our results more preliminary and require confirmation in a big study group.
Conclusion
In summary, we found medication-related improvements of QoL in children with ADHD and their parents.
Clinical Significance
QoL is an important parameter that should be included in the target parameters of ADHD treatment.
Authors' Contributions
H.T., T.A.K., and Z.Ö.E. were in charge of the study concept, design, and drafting of the article. Acquisition, analysis, and interpretation of data; critical revision of the article; and administrative, technical, or material support for important intellectual content were done by all authors. Statistical analysis was done by S.O., P.S.P., and C.P. Study supervision was done by T.A.K. and C.P. All authors have read and approved the final article.
Footnotes
Disclosures
No competing financial interests exist.
