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1.
  • Cortese, Samuele, et al. (author)
  • Psychopharmacology in children and adolescents: unmet needs and opportunities
  • 2024
  • In: The Lancet Psychiatry. - 2215-0366 .- 2215-0374. ; 11:2, s. 143-154
  • Research review (peer-reviewed)abstract
    • Psychopharmacological treatment is an important component of the multimodal intervention approach to treating mental health conditions in children and adolescents. Currently, there are many unmet needs but also opportunities, alongside possible risks to consider, regarding the pharmacological treatment of mental health conditions in children and adolescents. In this Position Paper, we highlight and address these unmet needs and opportunities, including the perspectives of clinicians and researchers from the European College of Neuropsychopharmacology–Child and Adolescent Network, alongside those of experts by lived experience from national and international associations, via a survey involving 644 participants from 13 countries, and of regulators, through representation from the European Medicines Agency. We present and discuss the evidence base for medications currently used for mental disorders in children and adolescents, medications in the pipeline, opportunities in the development of novel medications, crucial priorities for the conduct of future clinical studies, challenges and opportunities in terms of the regulatory and legislative framework, and innovations in the way research is conducted, reported, and promoted.
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2.
  • Bölte, Sven, et al. (author)
  • Standardised assessment of functioning in ADHD : consensus on the ICF Core Sets for ADHD
  • 2018
  • In: European Child and Adolescent Psychiatry. - : Dr. Dietrich Steinkopff Verlag GmbH and Co. KG. - 1018-8827 .- 1435-165X. ; 27:10, s. 1261-1281
  • Journal article (peer-reviewed)abstract
    • Attention-deficit/hyperactivity disorder (ADHD) is associated with significant impairments in social, educational, and occupational functioning, as well as specific strengths. Currently, there is no internationally accepted standard to assess the functioning of individuals with ADHD. WHO’s International Classification of Functioning, Disability and Health—child and youth version (ICF) can serve as a conceptual basis for such a standard. The objective of this study is to develop a comprehensive, a common brief, and three age-appropriate brief ICF Core Sets for ADHD. Using a standardised methodology, four international preparatory studies generated 132 second-level ICF candidate categories that served as the basis for developing ADHD Core Sets. Using these categories and following an iterative consensus process, 20 ADHD experts from nine professional disciplines and representing all six WHO regions selected the most relevant categories to constitute the ADHD Core Sets. The consensus process resulted in 72 second-level ICF categories forming the comprehensive ICF Core Set—these represented 8 body functions, 35 activities and participation, and 29 environmental categories. A Common Brief Core Set that included 38 categories was also defined. Age-specific brief Core Sets included a 47 category preschool version for 0–5 years old, a 55 category school-age version for 6–16 years old, and a 52 category version for older adolescents and adults 17 years old and above. The ICF Core Sets for ADHD mark a milestone toward an internationally standardised functional assessment of ADHD across the lifespan, and across educational, administrative, clinical, and research settings. © 2018 The Author(s)
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3.
  • de Schipper, Elles, et al. (author)
  • A comprehensive scoping review of ability and disability in ADHD using the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY)
  • 2015
  • In: European Child and Adolescent Psychiatry. - : Springer. - 1018-8827 .- 1435-165X. ; 24:8, s. 859-872
  • Research review (peer-reviewed)abstract
    • This is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Attention Deficit Hyperactivity Disorder (ADHD). The objective here was to use a comprehensive scoping review approach to identify the concepts of functional ability and disability used in the scientific ADHD literature and link these to the nomenclature of the ICF-CY. Systematic searches were conducted using Medline/PubMed, PsycINFO, ERIC and Cinahl, to extract the relevant concepts of functional ability and disability from the identified outcome studies of ADHD. These concepts were then linked to ICF-CY by two independent researchers using a standardized linking procedure. Data from identified studies were analysed until saturation of ICF-CY categories was reached. Eighty studies were included in the final analysis. Concepts contained in these studies were linked to 128 ICF-CY categories. Of these categories, 68 were considered to be particularly relevant to ADHD (i.e., identified in at least 5 % of the studies). Of these, 32 were related to Activities and participation, 31 were related to Body functions, and five were related to environmental factors. The five most frequently identified categories were school education (53 %), energy and drive functions (50 %), psychomotor functions (50 %), attention functions (49 %), and emotional functions (45 %). The broad variety of ICF-CY categories identified in this study underlines the necessity to consider ability and disability in ADHD across all dimensions of life, for which the ICF-CY provides a valuable and universally applicable framework. These results, in combination with three additional preparatory studies (expert survey, focus groups, clinical study), will provide a scientific basis to define the ICF Core Sets for ADHD for multi-purpose use in basic and applied research, and every day clinical practice.
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4.
  • de Schipper, Elles, et al. (author)
  • Ability and Disability in Autism Spectrum Disorder : A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version.
  • 2015
  • In: Autism Research. - : Wiley. - 1939-3792 .- 1939-3806. ; 8:6, s. 782-94
  • Journal article (peer-reviewed)abstract
    • OBJECTIVE: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span).METHODS: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached.RESULTS: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%).CONCLUSION: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD--both with respect to disability and exceptionality--and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD.
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5.
  • de Schipper, Elles, et al. (author)
  • Towards an ICF core set for ADHD : a worldwide expert survey on ability and disability
  • 2015
  • In: European Child and Adolescent Psychiatry. - : Springer Science and Business Media LLC. - 1018-8827 .- 1435-165X. ; 24:12, s. 1509-1521
  • Journal article (peer-reviewed)abstract
    • This is the second in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF and Children and Youth version, ICF-CY) core sets for attention deficit hyperactivity disorder (ADHD). The objective of this stage was to gather the opinions from international experts on which ability and disability concepts were considered relevant to functioning in ADHD. An email-based survey was carried out amongst international experts in ADHD. Relevant functional ability and disability concepts were extracted from their responses and linked to the ICF/-CY categories by two independent researchers using a standardised linking procedure. 174 experts from 11 different disciplines and 45 different countries completed the survey. Meaningful concepts identified in their responses were linked to 185 ICF/-CY categories. Of these, 83 categories were identified by at least 5 % of the experts and considered the most relevant to ADHD: 30 of these were related to Body functions (most identified: attention functions, 85 %), 30 to Activities and Participation (most identified: school education, 52 %), 20 to Environmental factors (most identified: support from immediate family, 61 %), and 3 to Body structures (most identified: structure of brain, 83 %). Experts also provided their views on particular abilities related to ADHD, naming characteristics such as high-energy levels, flexibility and resiliency. Gender differences in the expression of ADHD identified by experts pertained mainly to females showing more internalising (e.g. anxiety, low self-esteem) and less externalising behaviours (e.g. hyperactivity), leading to a risk of late- and under-diagnosis in females. Results indicate that the impact of ADHD extends beyond the core symptom domains, into all areas of life and across the lifespan. The current study in combination with three additional preparatory studies (comprehensive scoping review, focus groups, clinical study) will provide the scientific basis to define the ADHD ICF/-CY core sets for multi-purpose use in basic and applied research and every day clinical practice.
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6.
  • Dutia, Iain, et al. (author)
  • Fatigue experienced by people with cerebral palsy : a systematic review of assessment tools and decision tree
  • 2024
  • In: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 46:9, s. 1751-1759
  • Journal article (peer-reviewed)abstract
    • Purpose: To conduct a systematic review of self- and proxy-report fatigue assessment tools used in studies of people with cerebral palsy (CP) of all ages, and to develop a fatigue assessment tool decision tree for clinicians and researchers.Materials and methods: Five electronic databases (MEDLINE, PsycInfo, CINAHL, Web of Science and Cochrane) were searched to September 2021 to identify studies assessing self-reported fatigue in people with CP of any age. The assessment tools utilised were extracted and two reviewers appraised the tool characteristics, clinical utility and psychometric properties. A decision tree for selecting fatigue assessment tools was constructed.Results: Ten assessment tools were identified across thirty-nine studies, three of which are valid and reliable for assessing fatigue severity and impact in people with CP. A four-level fatigue assessment tool decision tree was constructed. No valid and reliable tool for assessing cognitive fatigue was identified; responsiveness has not been evaluated in any tool for people with CP.Conclusions: Physical fatigue screening and assessment tools for people with CP are available and are presented in our decision tree, however their utility as outcome measures remains unclear. Cognitive fatigue is understudied and poorly understood, further work is required in this area.IMPLICATIONS FOR REHABILITATION Current measurement tools to screen and assess physical fatigue in people with cerebral palsy (CP) are valid and reliable and are presented in our 4-level decision tree to guide assessment tool selection.The responsiveness of these measurement tools to screen and assess physical fatigue has not been evaluated, therefore their utility as outcome measures in people with CP is unclear.Cognitive fatigue is understudied and poorly understood in people with CP.Valid and reliable tools to assess cognitive fatigue in people with CP are not available.
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7.
  • Jonsson, Ulf, 1974-, et al. (author)
  • Annual Research Review : Quality of life and childhood mental and behavioural disorders - a critical review of the research.
  • 2017
  • In: Journal of Child Psychology and Psychiatry. - : Wiley. - 0021-9630 .- 1469-7610. ; 58:4, s. 439-469
  • Research review (peer-reviewed)abstract
    • BACKGROUND: An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective.SCOPE AND METHODOLOGY: Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0-18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature.FINDINGS AND CONCLUSIONS: The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents' ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors.
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8.
  • Mahdi, Soheil, et al. (author)
  • An international clinical study of ability and disability in ADHD using the WHO-ICF framework
  • 2018
  • In: European Child and Adolescent Psychiatry. - : Springer. - 1018-8827 .- 1435-165X. ; 27:10, s. 1305-1319
  • Journal article (peer-reviewed)abstract
    • This is the fourth and final study designed to develop International Classification of Functioning, Disability and Health (ICF, and children and youth version, ICF-CY) core sets for attention-deficit hyperactivity disorder (ADHD). To investigate aspects of functioning and environment of individuals with ADHD as documented by the ICF-CY in clinical practice settings. An international cross-sectional multi-centre study was applied, involving nine units from eight countries: Denmark, Germany, India, Italy, Portugal, Saudi Arabia, Sweden and Taiwan. Clinicians and clinical researchers rated the functioning level of 112 children, adolescents and adults with ADHD using the extended ICF-CY checklist version 2.1a. The ratings were based on a variety of information sources, such as medical records, medical history, clinical observations, clinical questionnaires, psychometric tests and structured interviews with participants and family members. In total, 113 ICF-CY categories were identified, of which 50 were related to the activities and participation, 33 to environmental factors and 30 to body functions. The clinical study also yielded strengths related to ADHD, which included temperament and personality functions and recreation and leisure. The study findings endorse the complex nature of ADHD, as evidenced by the many functional and contextual domains impacted in ADHD. ICF-CY based tools can serve as foundation for capturing various functional profiles and environmental facilitators and barriers. The international nature of the ICF-CY makes it possible to develop user-friendly tools that can be applied globally and in multiple settings, ranging from clinical services and policy-making to education and research. 
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9.
  • Pan, Pei-Yin, et al. (author)
  • Headache in ADHD as comorbidity and a side effect of medications : a systematic review and meta-analysis
  • 2022
  • In: Psychological Medicine. - : Cambridge University Press. - 0033-2917 .- 1469-8978. ; 52:1, s. 14-25
  • Research review (peer-reviewed)abstract
    • There is mixed evidence on the association between headache and attention-deficit/hyperactivity disorder (ADHD), as well as headache and ADHD medications. This systematic review and meta-analysis investigated the co-occurrence of headache in children with ADHD, and the effects of ADHD medications on headache. Embase, Medline and PsycInfo were searched for population-based and clinical studies comparing the prevalence of headache in ADHD and controls through January 26, 2021. In addition, we updated the search of a previous systematic review and network meta-analysis of double-blind randomized controlled trials (RCTs) on ADHD medications on June 16, 2020. Trials of amphetamines, atomoxetine, bupropion, clonidine, guanfacine, methylphenidate, and modafinil with a placebo arm and reporting data on headache as an adverse event, were included. Thirteen epidemiological studies and 58 clinical trials were eligible for inclusion. In epidemiological studies, a significant association between headache and ADHD was found [odds ratio (OR) = 2.01, 95% confidence interval (CI) = 1.63-2.46], which remained significant when limited to studies reporting ORs adjusted for possible confounders. The pooled prevalence of headaches in children with ADHD was 26.6%. In RCTs, three ADHD medications were associated with increased headache during treatment periods, compared to placebo: atomoxetine (OR = 1.29, 95% CI = 1.06-1.56), guanfacine (OR = 1.43, 95% CI = 1.12-1.82), and methylphenidate (OR = 1.33, 95% CI = 1.09-1.63). The summarized evidence suggests that headache is common in children with ADHD, both as part of the clinical presentation as such and as a side effect of some standard medications. Monitoring and clinical management strategies of headache in ADHD, in general, and during pharmacological treatment are recommended.
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10.
  • Schneider, Gary, et al. (author)
  • Weight and Height in Children and Adolescents with Attention-Deficit/Hyperactivity Disorder: A Longitudinal Database Study Assessing the Impact of Guanfacine, Stimulants, and No Pharmacotherapy
  • 2019
  • In: Journal of child and adolescent psychopharmacology. - : MARY ANN LIEBERT, INC. - 1044-5463 .- 1557-8992. ; 29:4, s. 285-304
  • Journal article (peer-reviewed)abstract
    • Objectives: To assess the impact of long-term pharmacotherapy with guanfacine immediate- or extended-release (GXR), administered alone or as an adjunctive to a stimulant, on weight and height in children and adolescents with attention-deficit/hyperactivity disorder (ADHD). Methods: Data were extracted from U.S. Department of Defense medical records for patients 4-17 years of age at index date (initiation of any study medication following a year without ADHD medications, or diagnosis if unmedicated) with weight/height measurements for the analysis period (January 2009-June 2013) and the previous year (baseline). Longitudinal weight and height z-scores were analyzed using multivariable regression in three cohorts: guanfacine (initial period of guanfacine exposure), first-line stimulant monotherapy (initial period of exposure), and unmedicated. Guanfacine cohort subgroups were based on previous/concurrent stimulant exposure. Results: The weight analyses included 47,910 patients (66.8% male) and the height analyses 41,248 (67.2% male). Mean initial exposure in the weight analyses was 237 days (standard deviation [SD] = 258, median = 142) for guanfacine and 257 days (SD = 284, median = 151) for first-line stimulant monotherapy, and was similar in the height analyses. Modeling indicated that guanfacine monotherapy was not associated with clinically meaningful deviations from normal z-score trajectories for weight (first-line, n = 943; nonfirst-line, n = 796) or height (first-line, n = 741; nonfirst-line, n = 644). In patients receiving guanfacine adjunctive to a stimulant, modeled weight (n = 1657) and height (n = 1343) z-scores followed declining trajectories. In this subgroup, mean standardized weight/height had decreased during previous stimulant monotherapy. For first-line stimulant monotherapy, modeled weight (n = 32,999) and height (n = 28,470) z-scores followed declining trajectories during year 1. In the unmedicated cohort, modeled weight (n = 11,515) and height (n = 10,050) z-scores were stable. Conclusions: Guanfacine monotherapy (first-line or nonfirst-line) was not associated with marked deviations from normal growth in this modeling study of children and adolescents with ADHD. In contrast, growth trajectories followed an initially declining course with stimulants, whether given alone or with adjunctive guanfacine.
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