Abstract
Objectives:
The aim of this study was to investigate the variables that may affect treatment continuation in children aged 6 to 12 years who were newly diagnosed with ADHD.
Methods:
A total of 132 children diagnosed with ADHD and their parents participated in the study. Sociodemographic and clinical risk factors affecting continuation of treatment were examined using logistic regression analysis.
Results:
Multiple model examination revealed that greater age increased the risk of treatment discontinuation 1.824 times (p = .003) while a lower total length of paternal education increased the risk of discontinuation (1/0.835) 1.198 times (p = .022). Other variables emerging as significant in the univariate model lost that significance in the multiple model.
Conclusions:
Understanding the variables associated with medication discontinuation in ADHD in different populations and taking these variables into account in the development of health policies, will be useful in improving the long-term devastating effects of the disorder.
Introduction
ADHD is the most common neurodevelopmental disorder in childhood and is characterized by inattention, hyperactivity, and impulsivity inappropriate to the individual’s age and level of development (American Psychiatric Association, 2013). Poor peer and familial relations, an increased risk of accidents, and poor school performance in children with ADHD have been associated with poor school attendance, poor academic performance, alcohol and substance use problems, involvement in crime, and early sexual experiences in adolescence, and adolescent pregnancies (Harpin, 2005). Long-term observational studies and retrospective examinations of children diagnosed with ADHD have shown that symptoms also persist into early adulthood in a large proportion of cases (Caye et al., 2016). ADHD in individuals whose symptoms commencing in childhood persist into adulthood has been associated with poor performance at work, unemployment, emotional, and marital problems, an increased risk of traffic accidents, substance use disorders, and a tendency to criminality (Franke et al., 2018).
All ADHD guidelines stress the importance of multimodal therapeutic strategies. Evidence-based therapeutic applications in ADHD include psychosocial interventions, parental application programs, child-based behavioral programs, and drug therapies. While drug therapies are the only effective method in terms of the core symptoms of ADHD, other interventions have been found to be beneficial in areas such as parent-child relationship problems, internalizing symptoms, and social skills (Caye et al., 2019). Drugs groups approved by the Food and Drug Administration (FDA) for use in children diagnosed with ADHD include psychostimulants (methylphenidate and amphetamines), atomoxetine, and alpha 2 agonists (guanfacine and clonidine). Although drug therapies, and particularly stimulant therapies, have been found to be effective in social functions and the academic sphere in addition to the core symptoms of ADHD in the long and short term, studies have noted low rates of drug therapy compliance and continuation (Rashid et al., 2018; Shaw et al., 2012). Due to its chronic course characteristics, ADHD is a condition that may require long-term treatment. However, approximately half of patients have been shown not to comply with guideline-appropriate treatment protocols or to discontinue medications after commencement (Gajria et al., 2014).
Drug therapy compliance and continuation in ADHD can be affected by a number of variables, such as sociodemographic and clinical characteristics, drug effects and side-effects, factors associated with the health system, and the individual’s and family’s beliefs concerning the disease and drug therapy. Previous studies have found that factors such as ethnic differences and not being covered by insurance (Stevens et al., 2005), parents regarding drug therapy as unacceptable (DosReis et al., 2009), the patient being at an older age when treatment is initiated and the health center where treatment is started (Chen et al., 2011), and decreased drug efficacy and side-effects (Atzori et al., 2009) are associated with early discontinuation of drug therapy.
The purpose of this study was to investigate sociodemographic and clinical characteristics, erroneous societal beliefs, and factors associated with health care providers that may impact on drug compliance and continuation in children diagnosed with ADHD.
Method
Study Design and Sampling
The study sample consisted of 132 children aged 6 to 12 years presenting to the child and adolescent psychiatric clinics of centers providing tertiary health care in different regions of Türkiye and started on drug therapy with first diagnoses of ADHD. The study was conducted in university clinics from three different geographical regions of the country where participation in the study was accepted. Exclusion criteria were the presence of autism, intellectual disability, psychotic disorder, bipolar disorder, and chronic neurological disease.
Procedure
All participants underwent DSM-V-based psychiatric interviews by child and adolescent psychiatry specialists. ADHD symptom severity was recorded by scoring the first part of the Clinical Global Impressions Scale. Parents and teachers were asked to complete the Turgay DSM-IV Based Child and Adolescent Disruptive Behavior Disorders Screening and Rating Scale. Standard verbal psychoeducation concerning the etiopathology of the disease, its clinical characteristics, and methods of treatment was given to all children diagnosed with ADHD and their parents.
The sociodemographic data and 1-year treatment records and of children diagnosed with ADHD and their parents who volunteered to participate in the study between January 2021 and May 2022 were retrieved retrospectively from their files and through the electronic prescription system. Socioeconomic and cultural characteristics were standardized using the Hollingshead-Redlich Scale. The participants were divided into two groups according to treatment continuation criteria. Patients continuing with follow-up and treatment for 1 year (with three or more clinical examinations and regular prescriptions) were regarded and complying with and continuing treatment. Patients who did not meet these criteria were contacted by telephone, and information about their continuation of treatment was obtained from the parents. Patients being followed-up in another center and continuing treatment were excluded from the study. Patients not being followed-up and treated in another center and with two or fewer prescriptions after commencing treatment were defined as the non-treatment compliance and continuation group. The parents of patients without treatment compliance and continuation underwent semi-structured interviews involving questions prepared by the researchers.
Approval for the study was granted by the Tekirdağ Namık Kemal University Medical Faculty non-interventional clinical research ethical committee, Türkiye (no. E-46048792-050.01.04-344904 dated 12.09.2023).
Measures
Hollingshead-Redlich Scale
This scale used in 1987 in Andreasen’s book “Comprehensive assessment of symptoms and history” was translated into Turkish by Tiryaki (Andreasen et al., 1992). Five different socioeconomic-sociocultural levels are defined in an ordinal manner. Evaluation is based on the parent with the higher level.
Turgay DSM-IV Based Child and Adolescent Disruptive Behavior Disorders Screening and Rating Scale
This scale was developed on the basis of DSM-IV diagnostic criteria and consists of nine items concerning inattention, six concerning hyperactivity, three concerning impulsivity, eight for oppositional defiant disorder, and fifteen for behavioral disorder. The items on the scale are scored from 0 to 3. The reliability and validity of the Turkish version were studies by Ercan (2001).
Clinical Global Impressions Scale
This scale was developed by the US National Institute of mental Health in 1976 under the name Clinical Global Impressions. The Clinical Global Impressions Scale consists of three sections involving disease severity, improvement, and side-effect severity. Only the disease severity section was employed in this study. The severity of the disease is rated between 1 and 7, based on the clinician’s impression in the light of his overall experience of the disease in question (Guy, 1976).
Statistical Analysis
The study data were analyzed using IBM SPSS version 23 software. Compatibility with normal distribution was examined using the Kolmogorov Smirnov and Shapiro Wilk tests. The Mann Whitney U test was applied in the two-way comparison of non-normally distributed data. Categorical data were compared using Yates correction, Fisher’s Exact test, and Pearson’s chi-square test, while multiple comparisons were performed using the Bonferroni-corrected Z test. Logistic regression analysis was applied in the examination of factors affecting discontinuation of treatment. The analysis results were expressed as frequency (percentage) values for categorical variables and as mean ± standard deviation and median (minimum − maximum)/rank average for quantitative variables. p-Values <.050 were regarded as statistically significant.
Results
Group Comparisons in Terms of Sociodemographic Characteristics
The study was performed was 132 children, 87 continuing with ADHD treatment and 45 non-continuing. A comparison of the groups in terms of quantitative sociodemographic variables revealed a significant difference in terms of median age at diagnosis (p < .001). The median age at diagnosis in the ADHD treatment continuation group was seven, compared to nine in the ADHD treatment discontinuation group. Median paternal length of education also differed significantly between the groups (p = .024). Median lengths of paternal education were 11 years in the ADHD treatment continuation group and in the discontinuation group. The difference derived from the rank average, with total paternal education rank averages of 70.69 in the ADHD treatment continuation group and 55.7 in the ADHD treatment discontinuation group. No significant differences were determined between the groups in terms of other quantitative sociodemographic parameters (p > .050). Comparison of categorical sociodemographic characteristics revealed statistically significant variation between the groups in terms of the presence of individuals with psychiatric diagnoses and ADHD in the extended family (p = .037 and .006, respectively). No significant variation was observed between the responses to other parameters by groups (p > .050). A comparison of sociodemographic variables is shown in Table 1.
A Comparison of Sociodemographic Variables by Groups.
Yates correction.
Pearson’s chi square test.
Fisher’s Exact test.
Mann Whitney U test; mean ± standard deviation; median (minimum − maximum)/rank average.
Group Comparisons of Clinical Characteristics
The presence of additional psychiatric diagnoses differed significantly between the groups (p = .023). Additional diagnoses were present in 66.7% of the patients continuing with ADHD treatment and in 44.3% of the treatment discontinuation group. The groups were also compared in terms of disease severity, and a significant variation was observed in the distribution of Clinical Global Impression scores (p = .042). In terms of severity, 5.7% of cases in the ADHD treatment continuation group were at a mild level, 39.1% of cases were moderate, 44.8% were severe, and 10.3% were highly severe. In the ADHD treatment discontinuation group, 15.6% of cases were mild, 53.3% of cases were moderate, 24.4% were severe, and 6.7% were highly severe. The difference here derived from the severe patient groups. No significant differences were observed in distributions of responses to other parameters between the groups (p > .050; Table 2).
A Comparison of Clinical Characteristics and Drug Therapy Characteristics by Groups.
Note. ODD = oppositional defiant disorder; BD = behavioral disorder.
No difference between groups with the same letter.
Pearson’s chi square test.
Yates correction.
Logistic Regression Analysis of Factors Predicting Treatment Discontinuation in Children Diagnosed With ADHD
Sociodemographic and clinical risk factors affecting discontinuation of treatment were examined by means of logistic regression analysis. In the univariate model, the risk of treatment discontinuation increased 1.992 times with age (p < .001). A lower paternal total duration of education increased the risk of discontinuation (1/0.868) 1.152 times (p = .023). The risk of discontinuation (1/0.400) was 2.5 times higher among individuals with no additional psychiatric diagnoses compared to those with such diagnoses (p = .015). The risk of treatment discontinuation (1/0.292) was 3.425 times higher among those without specific learning disorder compared to those with such disorder (p = .013). The absence of individuals diagnosed with ADHD in the extended family increased the risk of discontinuation (1/0.206) 4.854 times (p = .006). In the multivariate model, the risk of discontinuation increased 1.824 times as age increased (p = .003). A decreased duration of total paternal education increased the risk of discontinuation (1/0.835) 1.198-fold (p = .022). The logistic regression analysis results are shown in Table 3.
Examination of Risk Factors Affecting Treatment Discontinuation Using Logistic Regression Analysis.
Note. ODD = oppositional defiant disorder; BD = behavioral disorder.
Causes of Treatment Discontinuation Reported by Parents in Children Diagnosed With ADHD
Examination of the reasons for failure to maintain treatment in the ADHD treatment discontinuation group revealed that 40% of the sample cited side-effects, 40% believed that the symptoms would resolve spontaneously, 31.1% cited difficulties in making appointments, 24.4% feared stigmatization, and 20% rejected the diagnosis. Seventy-five percent of the 17.8% group giving other responses reported concerns that the drugs would result in dependence and 25% reported that the child refused to take them. Some participants gave more than one response regarding discontinuation of treatment. The frequency and percentage distributions are shown in Table 4.
Descriptive Statistics of Reasons for Treatment Discontinuation in the ADHD Treatment Discontinuation Group.
Discussion
This study investigated the factors that may affect discontinuation of treatment over a 1-year period following initiation of treatment in 132 children newly diagnosed with ADHD. The univariate model established from factors associated with treatment discontinuation identified increased age, a decreased total duration of paternal education, absence of additional diagnosis of specific learning disorder, and the absence of anyone diagnosed with ADHD in the extended family emerged as predictive of treatment discontinuation. At multivariate examination of the model, increased age at diagnosis and decreased length of total paternal education continued to be predictive, while the other variables lost their significance.
Untreated ADHD is associated with a low duration of education, occupational failure, interpersonal relationship problems, comorbid psychiatric diseases, substance abuse, and increased traffic accidents and events of a criminal nature. These raise psychological and economic costs for individuals, the family, and society and represent an important public health problem (Barkley, 2008; Kotsopoulos et al., 2013). Understanding the factors that affect drug therapy compliance in individuals with ADHD can represent the basis for the development of future interventions by identifying causes that potentially impair such compliance (Khan & Aslani, 2020). Previous studies examining factors affecting drug therapy compliance in children and adolescents diagnosed with ADHD have revealed differing sociocultural and sociodemographic data and findings concerning the functioning of health systems if different societies and show the importance of investigating drug therapy compliance in ADHD in different societies. Previous studies have more commonly examined drug therapy compliance in children using methylphenidate. To the best of our knowledge, the present study is the first from Türkiye to investigate drug therapy compliance in children using methylphenidate and atomoxetine in a multi-center manner with participants from different geographical regions with different sociocultural characteristics.
Previous studies of children with ADHD and their parents have revealed better adherence to medical treatment among young children, but that adherence decreases with age (Bahmanyar et al., 2013). In their cohort study of 10,153 children and adolescents diagnosed with ADHD, Chen et al. reported that older age increased the risk of early treatment discontinuation by 15% (Chen et al., 2011). A 36-month observational study of children with ADHD described late diagnosis as a negative factor in terms of continuation of drug therapy (Atzori et al., 2009). In agreement with the previous literature, a higher age at diagnosis of ADHD emerged as a predictive factor for drug therapy discontinuation in the present study. Factors such as efforts to separate and become independent, and an unwillingness to submit to authority in adolescence, a neurodevelopmental decrease in the severity of ADHD symptoms, and the gradual development of prejudice concerning drug therapy may be related to the decline in adherence to ADHD drug therapy as age increases (Emilsson et al., 2017; Kilic et al., 2007).
The investigation of parental characteristics associated with drug treatment compliance in children and adolescents with psychiatric disorders and targeted interventions aimed at guiding parents in improving their children’s drug adherence are subjects currently being studied. Parental characteristics that may be associated with drug treatment compliance in children and adolescents with psychiatric disorders were examined in a systematic review comprising 23 studies. Parents’ socioeconomic histories, the family’s life style and functioning, parental attitudes toward and perceptions regarding the importance of drug use in the treatment of psychiatric disorders, and parental mental health status were determined as factors associated with children and adolescents’ drug adherence (Kalaman et al., 2023). Research investigating 118 children with ADHD using medications for at least 6 months reported significant negative correlation between drug adherence and inattention scores and poor economic status, and significant positive correlation with a history of psychopharmacological therapy in the family and paternal education levels. However, no significant association was determined between compliance with treatment and age, sex, comorbid psychiatric disorders, maternal education, family history of ADHD, drug side-effects, or parental anxieties and beliefs about the need for medication use (Safavi et al., 2019). A recently published systematic review study described a low parental education level as an effective factor in the discontinuation of treatment in ADHD (Parkin et al., 2022). The results of the present study revealed that age at diagnosis, length of paternal education, and the presence in the extended family of individuals with psychiatric diseases and ADHD were associated with drug therapy discontinuation in children diagnosed with ADHD. Maternal education level and other sociodemographic variables did not emerge as significant. Studies evaluating drug therapy compliance among individuals being treated in child and adolescent psychiatric clinics have were particularly focused more on mothers’ roles in adherence to drug therapy, and the effects of fathers on adherence has not been sufficiently investigated (Nagae et al., 2015). The results of the present study showed that paternal education levels remained significant in the multiple regression model, and that age at diagnosis and paternal education levels were the dominant variables for predicting treatment compliance. Turkey is characterized by a patriarchal family system, where fathers hold significant influence over family relationships and communication (Giray & Ferguson, 2018). This influence extends to decision-making processes within the family, with fathers playing a predominant role in certain aspects of decision-making (Izci & Jones, 2018). The predominant role of fathers in intrafamilial decision-making mechanisms may be the reason behind our observed strong association between paternal education level and medication treatment discontinuity, distinct from mothers, in our study.
ADHD is one of the psychiatric disorders with the highest heritability, with genetic factors playing an important role in its etiopathogenesis. Studies examining drug therapy compliance have therefore also investigated the effect of the presence of other individuals diagnosed with ADHD in the family on treatment adherence. Some studies have reported that the presence in the family of an individual diagnosed with ADHD is associated with continuation of treatment, while others have reported the opposite (Gau et al., 2008; Safavi et al., 2019). The findings of the present study suggest that the presence of an individual with ADHD in the extended family is associated with treatment continuation. The presence of individuals with ADHD in the extended family may have provided information about the disease and its treatment beforehand, and may also have given the family experience of the devastating effect of untreated ADHD.
Psychiatric comorbidities are frequently observed in ADHD. Studies investigating the effect of the presence of comorbidity in children diagnosed with ADHD on drug therapy compliance and continuation have reported inconsistent results (Charach & Gajaria, 2008; Kamimura-Nishimura et al., 2022; Safavi et al., 2019). The results of the present study are consistent with those reporting that the presence of comorbidity in ADHD is associated with increased drug therapy compliance. The presence of comorbid psychiatric diseases in children diagnosed with ADHD further impairs the functionality of the child and the family, and leads to an increase in social, academic, and environmental burdens. This may cause parents to be more determined in their searches for treatment and enhance their belief in the need for medication, thus increasing treatment continuation. In addition, observing an improvement in children’s symptoms with drug therapy also improves treatment continuation (Nagae et al., 2015). While some previous studies have reported that comorbid oppositional defiant disorder (ODD) is associated with treatment continuation in children with ADHD, others have suggested the opposite (Atzori et al., 2009; Charach et al., 2004; Kamimura-Nishimura et al., 2022). No relationship between comorbid ODD diagnosis and treatment continuation in the present study, although diagnosis of comorbid specific learning disorder was associated with treatment continuation. This suggests that delayed academic progress may be a factor that increases drug therapy compliance in ADHD for children and adolescents in Türkiye.
As described in the Introduction section of this article, drug therapy compliance and continuation in ADHD can be affected by numerous variables, such as sociodemographic and clinical characteristics, medication effects and side-effects, factors associated with the health system, and the individual’s and family’s beliefs concerning the disease and drug therapy (Harpur et al., 2008; Parkin et al., 2022; Rashid et al., 2018). The most common reasons for discontinuation of treatment in the present study included believing that the symptoms would resolve spontaneously and drug side-effects at 40%, being unable to make appointments through the health system for psychiatric examinations at 31%, and anxiety concerning stigmatization as a result of diagnosis of ADHD at 24.4%. Other reasons included the idea that medications cause dependence, and the child refusing to take the medication. Studies have also highlighted that patients with mental illnesses in Turkey are perceived as dangerous, and negative attitudes toward them, such as the belief that they can never return to normal life, are prevalent (Albayrak & Karakaş, 2021). This negative perception of individuals with psychiatric disorders may be influenced by poor knowledge about the underlying biological origins of mental illness, which can contribute to stigma (Al-Rawashdeh et al., 2021). Additionally, it has been noted that religious beliefs play a role in how individuals cope with mental illness in Turkey (Látalová et al., 2014). Furthermore, the lack of acceptance of the Mental Health Law 12 in Turkey has led to the rights of patients with psychiatric disorders not being routinely respected (Şehiralti & Er, 2012). This indicates a complex interplay between cultural, legal, and religious factors in shaping beliefs about psychiatric disorders in Turkey. It is important to explain the natural course of ADHD in brief psychoeducation given to the family and child once ADHD has been diagnosed, to describe the potential accidents and risks that may occur if the disease is left untreated, and to provide detailed information about loss of functionality. Information must also be provided about the side-effects of the drugs used in the treatment of ADHD at the beginning of that treatment, to provide examples from studies performed, to invite patients for frequent check-ups when required, and to explain that the treatment can be modified as needed, without forgetting the chronic and prolonged course of the disease. Brief psychoeducation sessions have been found to exert a positive effect on both drug adherence and clinical symptoms in children with ADHD (Bai et al., 2015). Additionally, recent studies have emphasized the importance to treatment compliance of the clinician and the family taking joint decisions concerning treatment, and also of individualized treatment (Barry & Edgman-Levitan, 2012; O’Connor et al., 2004). This method, known as “shared decision making,” now occupies an important place within the health system (Elwyn et al., 2010). In the present study, brief psychoeducation was given to the parents of children newly diagnosed with ADHD and taking part in examinations. However, some of the items cited as reasons for discontinuation of treatment suggest that erroneous beliefs concerning ADHD and drug therapy are still widely prevalent in Türkiye and that routine brief psychoeducation provide din our clinics is inadequate. In addition, our results show that there is a problem concerning access to health services in Türkiye, and that this is one of the important variables adversely impacting on continuation of treatment.
To the best of our knowledge, this is the first study multi-center examination of treatment continuation in children diagnosed with ADHD in Türkiye. It therefore contains data regarding the beliefs and attitudes toward ADHD and the treatment thereof among individuals from different regions of the country. Since patients are able to present directly to tertiary health systems in Türkiye, we were able to collect data reflecting the general population in those regions where the research was performed. In addition, the particular strengths of this study are that standard examinations and psychoeducation were performed by specialist child and adolescent psychiatrists, its involving children who were newly diagnosed and started on medication, and the inclusion of patients within a specific age group in order to reduce the confounding effect of the characteristics of developmental stages.
However, there are also a number of limitations to this study. One is that sine the study sample was not from all geographical regions of Türkiye, the results cannot be generalized to the entire population. In addition, the patient number was limited since only newly diagnosed ADHD patients aged 6 to 12 years were enrolled. The exclusion of children with comorbid diagnoses of autism and intellectual disability has reduced the generalizability of our findings. Moreover, the standard psychoeducation provided was limited to parents attending with their children.
In conclusion, the study findings revealed that sociodemographic variables, rather than clinical characteristics, are the most important predictors of treatment discontinuation in ADHD, and that standard psychoeducation provided in clinics is not sufficient to eliminate erroneous societal beliefs about the treatment of ADHD. Due to its long-term adverse effects, untreated ADHD is an important public health problem, with high costs for society. Understanding the variables associated with drug therapy discontinuation in ADHD in different societies in terms of the individual, the family, and the functioning of health systems, and taking these variables into consideration in the development of health policies, will be beneficial in ameliorating the long-term devastating effects of the disease.
Footnotes
Acknowledgements
The authors wish to thank the patients and their families who participated in the study.
Author Note
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
