OBJECTIVE: Anterior drooling is a common comorbidity in children and young people (CYP) with neurodevelopmental disabilities. This study aimed to assess the social and emotional impact of drooling in CYP with a developmental age (DA) of 6 years and older, in whom this impact may differ from those with a lower DA due to their developing sense of self and awareness of their position within social groups.
METHODS: Questionnaire data collected for routine clinical care were used to assess parental perceptions of the impact of drooling on (1) social interaction; (2) satisfaction with social interaction, appearance, family relations and life in general and (3) the way CYP expressed feelings on appearance, acceptance by peers and acceptance by adults. Fisher\'s exact tests and Mann-Whitney U tests were applied to identify associations between clinical characteristics and the social and emotional impact of drooling.
RESULTS: Seventy-nine CYP with an estimated DA ≥ 6 years were included. The majority experienced frequent to constant (83%) and profuse (61%) drooling. Drooling frequently compromised social interaction with peers (49%) and adults (28%), and cognitive abilities were underestimated in 40%. Dissatisfaction with physical appearance (25%) related to drooling was noted. One-fifth of CYP reportedly expressed negative feelings on acceptance by peers related to drooling.
CONCLUSIONS: These findings underscore the substantial impact of drooling on CYP with a DA of 6 years and older, primarily through avoidance by peers and underestimated cognitive abilities, emphasizing that recognizing and addressing these social-emotional consequences should be integral to clinical care.
BACKGROUND: • Anterior drooling is common among children and youth with neurodevelopmental disabilities.
BACKGROUND: • There seems to be a heightened prevalence of impaired social interaction with peers and underestimation of cognitive abilities due to drooling among children with a developmental age of at least 6 years compared to previous studies with more heterogeneous populations. • The impact of drooling can extend to domains that affect self-esteem, although this may not be fully captured with standardized questions, requiring clinicians to address these consequences in a way that is tailored to the child\'s experiences.

Studies on the COVID-19 pandemic highlight detrimental effects of social distancing on mental health. These effects were also observed among caregivers of people with intellectual and developmental disabilities (IDD), who undergo particular challenges in this context. This study aimed to identify the coping strategies adopted by caregivers of people with IDD in the period of social isolation during the COVID-19 pandemic and their relationship to signs of mental illness. Forty-eight caregivers of people with IDD who were users of a non-governmental organization for the assistance of people with IDD and their families in southeastern Brazil undertook an on-line survey. Data analysis included descriptive statistics, Pearson\'s correlation, multiple regression, and the word cloud technique. Results indicate that most caregivers employed healthy coping strategies and used negative words to describe their feelings towards the pandemic. Confrontation, withdrawal, self-control, social support, acceptance, and escape correlated with psychological symptoms (stress, depression, or loneliness). Those symptoms were more prevalent among participants using escape as a coping strategy. These findings indicate that caregivers of people with National Deworming Day (NDD) used mostly positive coping strategies to face the COVID-19 pandemic, which may have contributed to the low prevalence of psychological burden in this population.

OBJECTIVE: To investigate the relationship between the developmental quotient (DQ) at age 3 years and the need for educational support at school age in extremely preterm infants.
METHODS: A total of 176 infants with a gestational age of <28 weeks were analyzed. The total DQ and subscales were evaluated using the Kyoto Scale of Psychological Development (KSPD) test. Neurodevelopment at age 3 years was stratified using total DQ in a conventional (DQ < 70 as developmental delay, DQ 70- <85 as subnormal, DQ ≥85 as normal) and a modified way (subdividing normal into DQ 85- <93 as low-normal and DQ ≥93 as high-normal). The prevalence of future educational support was compared for each stratum. Additionally, subscales were compared between those with and without educational support in each total DQ stratum.
RESULTS: In conventional stratification, the prevalence of educational support was 32 (63 %) for developmental delay, 14 (24 %) for subnormal, and 10 (15 %) for normal. In modified stratification, the prevalence was 8 (26 %) for low-normal and 2 (5 %) for high-normal. While there was no significant difference in the odds of educational support between the normal and subnormal, the low-normal had significantly higher odds compared to the high-normal (OR 6.00; 95 % CI, 1.16-30.95, p = 0.03). Among the low-normal stratum, the language-social subscale was significantly lower in those with educational support.
CONCLUSIONS: Setting high thresholds for total DQ and evaluating detailed subscales at age 3 years may be useful for developmental follow-up in extremely preterm infants.

BACKGROUND: Since 2011 when the Canadian Institutes of Health Research launched the Strategy for Patient Oriented Research, there has been a growing expectation to embed patient-oriented research (POR) in the health research community in Canada. To meet this expectation and build capacity for POR in the field of neurodevelopmental disability and child health, in 2017 researchers and family leaders at CanChild Centre for Childhood Disability Research, McMaster University partnered with Kids Brain Health Network and McMaster Continuing Education to develop and implement a 10-week online Family Engagement in Research (FER) Course.
METHODS: From its inception, the FER Course has been delivered in partnership with family leaders and researchers. The FER Course is innovative in its co-learning and community building approach. The course is designed to bring family partners and researchers together to co-learn and connect, and to develop competency and confidence in both the theory and practice of family engagement in research. Coursework involves four live online group discussions, individual review of course materials, weekly group activities, and a final group project and presentation. Upon completion of the FER Course, graduates earn a McMaster University micro-credential.
CONCLUSIONS: To meet a need in building capacity in POR, a novel course in the field of neurodevelopmental disability and child health has been co-created and delivered. Over six years (2018-2023), the FER Course has trained more than 430 researchers and family partners across 20 countries. A unique outcome of the FER Course is that graduates expressed the wish to stay connected and continue to collaborate well beyond the course in turn creating an international FER Community Network that continues to evolve based on need. The FER Course is creating a growing international community of researchers, trainees, self-advocates, and family partners who are championing the implementation of meaningful engagement in neurodevelopmental disability and child health research and beyond. The course is internationally recognized with an established record of building capacity in POR. Its uptake, sustainability, and scalability to date has illustrated that training programs like the FER Course are necessary for building capacity and leadership in family engagement in research.
In the last two decades there has been a clear commitment in Canada (and the world) to include patients and their families in health research—a process called patient-oriented research or as we refer to it—family engagement in research. In 2011, the Canadian Institutes of Health Research introduced the Strategy for Patient-Oriented Research to make this happen. To support POR in neurodevelopmental disability and child health, CanChild Centre for Childhood Disability Research teamed up with Kids Brain Health Network and McMaster Continuing Education. Together, a team of family caregivers and researchers co-created the Family Engagement in Research (FER) Course, a 10-week online course.The purpose of the FER Course is for researchers and family partners to learn about family engagement principles and how to use them in research. The course covers core areas in family engagement including how to find each other, how families and researchers can work together, and ways to overcome common challenges in research partnerships. The course uses online group sessions, discussion boards, and various resources such as research papers and videos. Through a group project, family partners and researchers collaborate to create a resource on family engagement. Completing the FER Course researchers and family members earn a McMaster University micro-credential and become part of a growing global community of FER Course graduates.Over six years (2018–2023), the FER Course has trained more than 430 researchers and family partners from 20 countries. The course has strengthened capacity in family engagement and is building a worldwide community of researchers, trainees, self-advocates, and family partners who are dedicated to improving neurodevelopmental disability and child health research through meaningful engagement.

Exome sequencing (ES) has emerged as an essential tool in the evaluation of neurodevelopmental disorders (NDD) of unknown etiology. Genome sequencing (GS) offers advantages over ES due to improved detection of structural, copy number, repeat number and non-coding variants. However, GS is less commonly utilized due to higher cost and more intense analysis. Here, we present nine cases of pediatric NDD that were molecularly diagnosed with GS between 2017 and 2022, following non-diagnostic ES. All individuals presented with global developmental delay or regression. Other features present in our cohort included epilepsy, white matter abnormalities, brain malformation and dysmorphic features. Two cases were diagnosed on GS due to newly described gene-disease relationship or variant reclassification (MAPK8IP3, CHD3). Additional features missed on ES that were later detected on GS were: intermediate-size deletions in three cases who underwent ES that were not validated for CNV detection, pathogenic variants within the non-protein coding genes SNORD118 and RNU7-1, pathogenic variant within the promoter region of GJB1, and a coding pathogenic variant within BCAP31 which was not sufficiently covered on ES. GS following non-diagnostic ES led to the identification of pathogenic variants in this cohort of nine cases, four of which would not have been identified by reanalysis alone.

Families of individuals with neurodevelopmental disabilities or differences (NDDs) often struggle to find reliable health information on the web. NDDs encompass various conditions affecting up to 14% of children in high-income countries, and most individuals present with complex phenotypes and related conditions. It is challenging for their families to develop literacy solely by searching information on the internet. While in-person coaching can enhance care, it is only available to a minority of those with NDDs. Chatbots, or computer programs that simulate conversation, have emerged in the commercial sector as useful tools for answering questions, but their use in health care remains limited. To address this challenge, the researchers developed a chatbot named CAMI (Coaching Assistant for Medical/Health Information) that can provide information about trusted resources covering core knowledge and services relevant to families of individuals with NDDs. The chatbot was developed, in collaboration with individuals with lived experience, to provide information about trusted resources covering core knowledge and services that may be of interest. The developers used the Django framework (Django Software Foundation) for the development and used a knowledge graph to depict the key entities in NDDs and their relationships to allow the chatbot to suggest web resources that may be related to the user queries. To identify NDD domain-specific entities from user input, a combination of standard sources (the Unified Medical Language System) and other entities were used which were identified by health professionals as well as collaborators. Although most entities were identified in the text, some were not captured in the system and therefore went undetected. Nonetheless, the chatbot was able to provide resources addressing most user queries related to NDDs. The researchers found that enriching the vocabulary with synonyms and lay language terms for specific subdomains enhanced entity detection. By using a data set of numerous individuals with NDDs, the researchers developed a knowledge graph that established meaningful connections between entities, allowing the chatbot to present related symptoms, diagnoses, and resources. To the researchers\' knowledge, CAMI is the first chatbot to provide resources related to NDDs. Our work highlighted the importance of engaging end users to supplement standard generic ontologies to named entities for language recognition. It also demonstrates that complex medical and health-related information can be integrated using knowledge graphs and leveraging existing large datasets. This has multiple implications: generalizability to other health domains as well as reducing the need for experts and optimizing their input while keeping health care professionals in the loop. The researchers\' work also shows how health and computer science domains need to collaborate to achieve the granularity needed to make chatbots truly useful and impactful.

BACKGROUND: Despite the established efficacy of glycopyrronium bromide in reducing drooling among children with neurodevelopmental disabilities, evidence on its impact on the daily lives of children and parents and effectiveness in a real-world setting are scarce, especially among long-term users. This study explored timing and duration of glycopyrronium treatment, effect and impact on daily life, and occurrence of side effects to inform clinical practice.
METHODS: This was a retrospective cohort study at a national referral centre for drooling, including 61 children with nonprogressive neurodevelopmental disabilities, treated with glycopyrronium for anterior and/or posterior drooling between 2011 and 2021. Data were obtained from medical records and supplemented by structured telephone interviews with parents.
RESULTS: Anterior drooling severity decreased in 82% of the included children. Changes in the impact of drooling on burden of care, social interaction, and self-esteem were reported in 55%, 31%, and 36%, respectively. Side effects were noted for 71% of cases, yet only 36% of parents deemed these as outweighing the positive impact of treatment. A substantial majority (77%) of the included children were long-term users (≥6 months). Among these, 38% of parents reported decreasing effectiveness and 27% noticed more prominent side effects over time.
CONCLUSIONS: Glycopyrronium demonstrated potential in mitigating the impact of drooling on daily life, although variations were observed in the specific aspects and extent of improvement. The real-world context of our study provides important insights for refining clinical practices, emphasizing the need for balanced consideration of treatment benefits and potential side effects to facilitate shared decision-making.

Neurodevelopmental disability in children covers a vast array of congenital and acquired long-term conditions associated with brain or neuromuscular impairments that impact function. While some presentations of neurodevelopmental disability align with diagnostic labels, many do not, leaving children whose conditions don\'t fit neatly under diagnostic labels struggling to access services or families and professionals feeling pressured to assign a diagnostic label in order to access services. In this paper, we (1) discuss the evidence showing that there is often a mismatch between a child\'s neurodevelopmental diagnosis, or lack of diagnosis, and function, (2) comment on the inequities exacerbated by diagnosis-based approaches for services, and (3) highlight the potential benefits of using a function and participation-based approach for providing services to children with neurodevelopmental disabilities. We close with three calls to action for function and participation-based approaches that could better support equitable services for children with neurodevelopmental disabilities.

BACKGROUND: Autistic adults are at increased risk of mental health difficulties; however Adult Mental Health Services (AMHS) often struggle to offer appropriate support to this group. Within England, Government initiatives, such as the \'Transforming Care\' programme which included \'Building the Right Support\' (NHS England, 2015) have promoted the need for AMHS to consider how they can better provide autism-informed support to autistic adults.
OBJECTIVE: Here, we describe the first two years of work of the Transforming Care in Autism (TCA) Team; a specialist service that supports autistic adults, without a moderate or severe intellectual disability or presenting significant risk to others, experiencing a mental health crisis. The service model is described, and descriptive data is presented over the two years of the service operation.
RESULTS: Between February 2019 and February 2021, 110 referrals were received; 52 (47%) were accepted. Support offered to autistic adults included psychoeducation, psychological interventions, family-focused interventions, and consultation with professionals about specific individuals. Seventy autism training sessions were delivered to professionals working in medical health settings, AMHS, social care and residential services.
CONCLUSIONS: Developing more autism-informed community and inpatient AMHS is vital for improving care. Further research about the experiences and needs of autistic adults using AMHS is needed, along with improved awareness of autism and provision of tailored intervention within these settings.
UNASSIGNED: Autistic people have mental health problems more often than people who are not autistic. When autistic people need help from mental health services, often these services do not know how to help autistic people. The Government says mental health services must do more to help autistic people. In this paper we write about a new team, called the Transforming Care in Autism team. In its first two years the team was asked to help 110 people and worked with 52 of them. Help included talking to autistic people about how autism affects them and offering therapy. We also worked with families and professionals supporting autistic adults and offered 70 training sessions. More work is needed to make sure mental health services work well with autistic people. We also need to ask autistic people about their experiences of getting help from mental health services.

BACKGROUND: Much research has explored how raising a child with a neurodevelopmental disability influences parents\' well-being. However, little research has focused on the unique experiences of parenting multiple children with neurodevelopmental disabilities. We explored the unique experiences of parenting multiple children with neurodevelopmental disabilities with a focus on mothers\' well-being and social participation.
METHODS: Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach.
RESULTS: Three themes were identified: \'Knowledge is power\' described positive influences of enhanced disability knowledge and advocacy with each child who experienced disability. \'Shifts in wellbeing\' acknowledged these mothers\' exhaustion, decreased time for self-care, and invisible work, yet also increased feelings of empowerment, purpose and empathy for others. \'(Dis)Connection and engagement with others\' reflected struggles of balancing responsibilities, social and community participation, and experiences with isolation. Yet, mothers\' also experienced enhanced disability community and family connections, and a sense of meaning and purpose.
CONCLUSIONS: Findings highlighted challenges, and many rewarding and unique experiences of parenting multiple children with neurodevelopmental disabilities. Health, education and social service practitioners are encouraged to acknowledge parent\'s challenges, but also celebrate and draw on families\' strengths and knowledge.