Browsing by Author "Arnold, Paul"

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    Developing a provincial patient support network for children and families affected by Tourette syndrome and/or obsessive–compulsive disorder: results of a stakeholder consultation
    (2021-06-16) Fletcher, Julian; Dimitropoulos, Gina; Martino, Davide; Wilcox, Gabrielle; MacMaster, Frank; Arnold, Paul; Pringsheim, Tamara
    Abstract Background Tourette syndrome and OCD are disorders that frequently occur in children and cause a high level of disability. In Alberta there is a huge delivery gap in providing healthcare services for children with TS and OCD. A stakeholder consultation was performed to ascertain how service delivery could be improved across the province and to inform the development of a provincial information and support organization, the Tourette OCD Alberta Network. Methods A mixed-methods study was employed: 10 parents were recruited for interview and 140 parents responded to a survey. Results Qualitative data showed there was often an absence of a clear pathway to access healthcare for people with TS and OCD. The negative impact of not receiving treatment, information, and resources in a timely and prompt manner was also revealed. Good clinical practice existed across the province but too often it was hindered by a shortage of knowledge about TS and OCD. In schools, learning for students with TS and OCD was also impaired by educators’ lack of knowledge and preparedness in relation to the disorders. Conclusions This study identified ways that challenges with healthcare access, school learning, and seeking information can be overcome. Skills-based training webinars, educational outreach in schools, and peer support were recognized as actions for improving healthcare outcomes for people with TS and OCD. The aim of the Tourette OCD Alberta Network is to provide services and support that directly address the healthcare service delivery shortfalls shown in this study.
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    An Evaluation of Satisfaction with Emergency Department Care in Children and Adolescents with Mental Health Concerns
    (2022-05-06) Lategan, Conné; Freedman, Stephen; Newton, Amanda S; Arnold, Paul; Lang, Eddy
    The emergency department (ED) is a vital safety net for children and adolescents with mental health concerns seeking crisis care. Yet, EDs face significant challenges in managing mental health concerns. Evaluating patient and parent/caregiver satisfaction with care delivery is essential to guide improvements in the quality of mental health services provided. This study involved enrolling participants over a 12-month period to evaluate child/adolescent and parent/caregiver satisfaction with mental health care in two pediatric EDs. Patients <18 years of age presenting with a range of mental health concerns (e.g., anxiety, disruptive behaviours, self- harm, depression, situational crisis) were eligible and enrolled. Discharge diagnoses were grouped by ICD-10-CA codes. Data were collected using the Service Satisfaction Scale. I conducted Pearson’s correlation coefficient tests to report associations of general satisfaction with individual aspects of ED care, multivariable regression analysis to report associations of total satisfaction score with patient and clinical care characteristics, and inductive thematic analysis to identify and describe satisfaction and patient experience themes from qualitative feedback. The study included 646 participants, the majority of whom were Caucasian (71.2%; 460/646), female (56.3%; 364/646). The median age of patients was 13 years (IQR, 11-15 years). The most common diagnoses among participants were anxiety or stress-related disorders (39.5%; 245/620), suicidal ideation (26.0%; 161/620), and mood disorders (25.0%; 155/620). The perception of the amount of help a child received during the visit was most strongly associated with general satisfaction (r=0.85). Clinical care characteristics associated with satisfaction were receipt of an evaluation by a mental health team member (p=0.004) and consultation by a psychiatrist (p=0.05) during the ED visit. Themes that emerged from the thematic analysis included satisfaction with the ED health care team’s attitude and interpersonal skills and dissatisfaction with standards of care expectations, wait time for care, and general access to mental health care. Overall, the results point to the need to improve the satisfaction with ED mental health care delivery with a particular focus on enhancing access to care to mental health providers with expertise (e.g., mental health nurses, counsellors, psychiatrists).
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    Factors Affecting Parental Help seeking for Children with Mental Health Problems
    (2017) Harvalik, Paula; Kingston, Dawn; Arnold, Paul; McDonald, Sheila; Goldsworthy, Sandra
    Background. Childhood mental health problems have an early onset, are highly prevalent, and persistent into adolescents’ and adulthood, and left untreated, mental health problems are exacerbated by comorbid disorders. Early screening and intervention for childhood mental health is key to improved outcomes. Very young children that experience emotional or behavioural problems rely primarily on their parents for help-seeking on their behalf. Parents often do not recognize problematic behaviour that requires further evaluation and treatment. Without parental help-seeking, these children’s mental health problems remain undetected and untreated throughout the lifespan. Understanding what perceived barriers and facilitators exist for parents that have children with problematic behaviours, can inform the development of early intervention programs aimed at very young children (i.e., 5 years old and under). The aim of this thesis by publication was to examine the barriers and facilitators to help-seeking for parents with children that have emotional and behavioural problems. Methods. Two published studies of perceived barriers and facilitators to help-seeking for parents of young children were identified through searches using PubMed, PsycINFO, Embase, and CINAHL databases. Data was extracted and summarized in tables. Results. Parents reported perceived barriers to be: (a) child’s problems being identified as transient and part of a stage that will go way on their own, (b) not knowing what services were available, and (c) not knowing what sources were available for help. Conclusions. Increased research and development of early screening and intervention programs that target parents of very young children will improve mental health outcomes for children, their families, and communities.
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    Literacy, expectations, and satisfaction of psychiatric pharmacogenetic testing in youth receiving pharmacological treatment for a mental health condition
    (2024-06-24) Oomen, Anita Janine; Bousman, Chad; Marshall, Deborah; Arnold, Paul; Maruf, Abdullah Al
    Background: Pharmacogenetic (PGx) testing uses a person’s DNA to inform prescribing. Despite established clinical benefits, patient literacy, expectations, and satisfaction with PGx testing is unclear, particularly in youth. This study assessed literacy, expectations, and satisfaction of PGx testing among youth receiving pharmacotherapy for a mental health condition and explored associations between these factors. I hypothesized higher PGx literacy would be associated with lower expectations of PGx testing benefits. I also hypothesized that expectations of testing would be associated with satisfaction, according to the Expectation-Disconfirmation Theory (EDT). Methods: A nested, pre-post, quasi-experimental research design was employed. Using EDT and collaborating with patient partners, measures of patient expectations and satisfaction with PGx testing were developed and psychometrically evaluated among 41 participants aged 12-24 seeking PGx testing before initiating or changing a psychiatric medication. Following psychometric evaluation, 175 youth (n=175) aged 11-24 were administered the expectations and a PGx literacy survey prior to PGx testing. Descriptive data was also collected. Hypothesis testing was performed using ordinal logistic regression models adjusted for key covariates. Thirty-four youth (n=34) were also administered the satisfaction survey 2 months after receipt of PGx test results. Results: The expectations and satisfaction surveys were tested for reliability (Cronbach’s alpha =0.703 and 0.846, respectively), content validity (content validation ratio>0.50 for all items), and construct validity (satisfaction items rho>0.60; expectation items rho=0.02-0.67). Hypothesis testing found PGx literacy was not associated with PGx testing expectations related to finding the right medication or dose, but higher literacy was associated with lower expectations of feeling better faster (p=0.025) and reduced medication side-effects (p=0.045). High levels of satisfaction with PGx testing were reported (97.06% satisfied). Consequently, there was insufficient variance to assess an association between expectations and satisfaction. Conclusion: Higher PGx literacy is associated with lower expectations that PGx testing will help people feel better and that PGx testing will reduce new or existing side-effects. Initiatives to boost PGx literacy may assist in the management of youth expectations toward PGx testing. Satisfaction with PGx testing was found to be high. Further research is needed to assess what factors contribute to youth expectations and satisfaction with PGx testing.
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    The relationship of genetics with cognitive and behavioral impairments in idiopathic Parkinson’s disease patients
    (2021-06-10) Ramezani, Mehrafarin; Monchi, Oury; Pfeffer, Gerald; Pike, Bruce; Martino, Davide; Arnold, Paul
    Parkinson’s disease (PD) is currently characterized by cardinal motor symptoms of rigidity, tremor and bradykinesia. However, this disease is far from a mere movement disorder, and non-motor symptoms have a substantial adverse effect on the quality of life for PD patients. PD patients suffer from a broad range of non-motor symptoms but two of them are the focus of this thesis, neuropsychiatric and cognitive impairments. The true cause of these symptoms’ manifestation is still unknown, but it is speculated that they might originate from the extensive neuronal damage due to PD. The investigation of genetic variants associated with these non-motor symptoms can provide valuable information on the possible causes of non-motor symptoms, their prevention, and even their treatment. In this thesis, the association of some specified genetic variants were investigated with neuropsychiatric symptoms and cognitive impairments in idiopathic PD patients (iPD). In the 1st part, mild behavioral impairment (MBI) in iPD patients was investigated using the mild behavioral impairment checklist (MBI-C). In chapter 3, the association of MBI and rs6265 in the Brain-Derived-Neurotrophic-Factor (BDNF) was studied and it was shown that the Met allele for this variant was linked to higher risk of MBI. It was observed that the Met allele was associated with specific neuropsychiatric symptoms related to emotional dysregulation and distorted thoughts. In chapter 4, the relationship between rs4680 in Catechol-O-methyltransferase (COMT) and rs28363170 in Solute carrier family 3 member 6 (SLC6A3) with MBI was explored in iPD patients. These two variants are both pertinent in the regulation of dopamine availability in the frontal lobe. No association was found for either of these variants with MBI in iPD patients. In the second part, the association of a specific variant rs894280 in Synuclein-alpha (SNCA) and mild cognitive impairment (MCI) in iPD patients was explored. In chapter 5, a machine learning analysis was used to predict cognition in iPD patients. rs894280 was ranked as the second most important feature for prediction of cognition in PD patients. The post-hoc analysis demonstrated a connection between this variant and overall cognition, attention and visual-spatial abilities in iPD patients. This variant was further investigated in chapter 6 using longitudinal data from the Parkinson’s Progression Marker Initiative (PPMI) dataset. It was shown that rs894280 was linked to the cognitive status of drug-naïve iPD patients at baseline. This variant was associated with the rate of MCI conversion in iPD patients longitudinally, but no association was found between the variant and neuropsychiatric symptoms. In conclusion, this thesis presents genetic association with two prominent non-motor symptoms in iPD patients. These findings can be used to assist identification of PD patients at risk of cognitive decline or neuropsychiatric impairments. Nonetheless, further studies should be conducted to elucidate and validate the results of this thesis further. Limitations of the present projects and a framework for future studies are discussed in the last chapter.
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    Transcriptomics in the Diagnosis of Genetic Myopathies
    (2021-09-24) Joel, Matthew M.; Pfeffer, Gerald; de Koning, A. P. Jason; Arnold, Paul; Long, Quan; Anderson, David
    The myopathies are a diverse group of primary muscle disorders that arise for a variety of reasons, including both acquired disease (i.e. autoimmune disorders), or from genetic variation (the genetic myopathies). RNA sequencing is the application of next-generation sequencing technologies to sequence the transcriptomes of cells and tissues, yielding a functional, and regulatory snapshot of a sample. Comparing the transcriptomes of the autoimmune disorder inclusion body myositis, and a variety of genetic myopathies, including samples with mitochondrial, myofibrillar, dystrophic, or otherwise nonspecific pathology, showed an extensive immunological influence on those with myositis. There are more nuanced differences in the transcriptomes of the histologically grouped conditions among this cohort, including the previously described FGF21 upregulation in mitochondrial myopathies. Long non-coding RNAs are a neglected species of RNA with myriad regulatory roles. Several non-coding transcripts were identified among the studied groups, that will serve as candidates for testing their biomarker potential for muscle diseases. We tested the utility of RNAseq at diagnosing the genetic myopathy participants of this cohort, identifying four cases where potentially pathogenic variants were detected by accounting for transcript isoform abundance. Genes with transcriptional findings, and potentially pathogenic variants included FLNC, MYOT, NEB, and SELENON. The approach may not be optimal for diagnosing individuals with presumed mitochondrial disease, where minimal differences were observed in mitochondrial transcripts. Ultimately, RNAseq provides another tool for clinicians to investigate genetic disorders, and assist with differential diagnosis.