Dataset Information

Organizational perspectives and diagnostic evaluations for children with neurodevelopmental disorders.

ABSTRACT:

Aim

To clarify organizational perspectives on diagnostic evaluations for children with neurodevelopmental disorders (NDD), with the goal to enhance interorganizational collaboration and improve accessibility.

Method

Focus groups with expert stakeholders in Flanders, Belgium, were organized. Data were analyzed in a continuous, comparative method with researcher and data triangulation, and a member check validation.

Results

Fifty-nine people participated in six focus groups. Organizations had no shared vision on diagnostic evaluations of NDD. An interdisciplinary team approach was considered essential. All stakeholders agreed that a diagnostic evaluation is an iterative process along the trajectory of the child.

Interpretation

Diagnostic evaluations of NDD should be conceptualized as an integrated process of the child's care trajectory, differentiating needs-based goals in each phase, and requiring an interdisciplinary team approach. This conceptualization will support a health systems model, allowing interorganizational collaboration to optimize available capacity and increase accessibility.

SUBMITTER: Cloet E

PROVIDER: S-EPMC9290453 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature

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Publications

Organizational perspectives and diagnostic evaluations for children with neurodevelopmental disorders.

Cloet Eva E Jansen Anna A Leys Mark M

Developmental medicine and child neurology 20210811 1

<h4>Aim</h4>To clarify organizational perspectives on diagnostic evaluations for children with neurodevelopmental disorders (NDD), with the goal to enhance interorganizational collaboration and improve accessibility.<h4>Method</h4>Focus groups with expert stakeholders in Flanders, Belgium, were organized. Data were analyzed in a continuous, comparative method with researcher and data triangulation, and a member check validation.<h4>Results</h4>Fifty-nine people participated in six focus groups. ...[more]

PMID: 34379800

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Project description:Neurodevelopmental disorders - including attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder, communication disorders, intellectual disability, motor disorders, specific learning disorders, and tic disorders - manifest themselves early in development. Valid, reliable and broadly usable biomarkers supporting a timely diagnosis of these disorders would be highly relevant from a clinical and public health standpoint. We conducted the first systematic review of studies on candidate diagnostic biomarkers for these disorders in children and adolescents. We searched Medline and Embase + Embase Classic with terms relating to biomarkers until April 6, 2022, and conducted additional targeted searches for genome-wide association studies (GWAS) and neuroimaging or neurophysiological studies carried out by international consortia. We considered a candidate biomarker as promising if it was reported in at least two independent studies providing evidence of sensitivity and specificity of at least 80%. After screening 10,625 references, we retained 780 studies (374 biochemical, 203 neuroimaging, 133 neurophysiological and 65 neuropsychological studies, and five GWAS), including a total of approximately 120,000 cases and 176,000 controls. While the majority of the studies focused simply on associations, we could not find any biomarker for which there was evidence - from two or more studies from independent research groups, with results going into the same direction - of specificity and sensitivity of at least 80%. Other important metrics to assess the validity of a candidate biomarker, such as positive predictive value and negative predictive value, were infrequently reported. Limitations of the currently available studies include mostly small sample size, heterogeneous approaches and candidate biomarker targets, undue focus on single instead of joint biomarker signatures, and incomplete accounting for potential confounding factors. Future multivariable and multi-level approaches may be best suited to find valid candidate biomarkers, which will then need to be validated in external, independent samples and then, importantly, tested in terms of feasibility and cost-effectiveness, before they can be implemented in daily clinical practice.

Project description:Children with neurodevelopmental disorders (NDDs) share common behavioural manifestations despite distinct categorical diagnostic criteria. Here, we examined canonical resting-state network connectivity in three diagnostic groups (autism spectrum disorder, attention-deficit/hyperactivity disorder and paediatric obsessive-compulsive disorder) and typically developing controls (TD) in a large single-site sample (N = 407), applying diagnosis-based and dimensional approaches to understand underlying neurobiology across NDDs. Each participant's functional network graphs were computed using five graph metrics. In diagnosis-based comparisons, an analysis of covariance was performed to compare all NDDs to TD, followed by pairwise comparisons between NDDs. In the dimensional approach, participants' functional network graphs were correlated with continuous behavioural measures, and a data-driven k-means clustering analysis was applied to determine if subgroups of participants were seen, without diagnostic information having been included. In the diagnosis-based comparisons, children with NDDs did not differ significantly from the TD group and the NDD categorical groups also did not differ significantly from each other, across all graph metrics. In the dimensional, diagnostic-independent approach, however, subcortical functional connectivity was significantly correlated with participants' general adaptive functioning across all participants. The clustering analysis identified an optimal solution of two clusters, and participants assigned in the same data-driven cluster were highly heterogeneous in diagnosis. Neither cluster exclusively contained a specific diagnostic group, nor did NDDs separate cleanly from TDs. Each participant's distance ratio between the two clusters was significantly correlated with general adaptive functioning, social deficits and attentional problems. Our results suggest the neurobiological similarity and dissimilarity between NDDs need to be investigated beyond DSM/ICD-based, behaviourally-defined diagnostic categories.

Project description:BackgroundThe development of advanced genetic technologies has resulted in rapid identification of genetic etiologies of neurodevelopmental disorders (NDDs) and has transformed the classification and diagnosis of various NDDs. However, diagnostic genetics has far outpaced our ability to provide timely medical counseling, guidance, and care for patients with genetically defined NDDs. These patients and their caregivers present with an unmet need for care coordination across multiple domains including medical, developmental, and psychiatric care and for educational resources and guidance from care professionals. After a genetic diagnosis is made, families also face several barriers in access to informed diagnostic evaluations and medical support.MethodsAs part of Care and Research in Neurogenetics (CARING), a multidisciplinary clinical program for children and adults with neurogenetic disorders, we conducted qualitative clinical interviews about the diagnostic journey of families. This included the overall timeline to receiving diagnoses, experiences before and after diagnosis, barriers to care, and resources that helped them to navigate the diagnostic process.ResultsA total of 37 interviews were conducted with parents of children ages 16 months to 33 years. Several key themes were identified: (1) delays between initial caregiver observations and formal developmental or genetic diagnoses; (2) practical barriers to clinical evaluation and care, including long wait times for an appointment, lack of insurance coverage, availability of local evaluations, transportation difficulties, and native language differences; (3) the importance of being part of a patient advocacy group to help navigate the diagnostic journey; and (4) unique challenges faced by adults (18 years or older).ConclusionsFamilies of children with complex neurodevelopmental and genetic disabilities face numerous challenges in finding adequate medical care and services for their child. They experience considerable delays in receiving timely diagnoses and face significant barriers that further delay the process of receiving access to services needed for the child's continued care. The gaps indicated in this study speak to the need for more comprehensive coordination of care for patients with intellectual and developmental disabilities, as well as the development of systematic, disorder-specific resources both for providers and families in order to improve patient outcomes.

Dataset Information

Organizational perspectives and diagnostic evaluations for children with neurodevelopmental disorders.

Aim

Method

Results

Interpretation

Publications

Organizational perspectives and diagnostic evaluations for children with neurodevelopmental disorders.

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