Developmental surveillance and screening practices in a pediatric oncology clinic: Initial progress of a quality improvement study.

BACKGROUND: Pediatric cancer patients' oncology teams regularly take on a primary care role, but due to the urgent nature of cancer treatment, developmental screenings may be deprioritized. This leaves patients at risk of developmental diagnoses and referrals being delayed. AIMS: Clarify the current developmental surveillance and screening practices of one pediatric oncology team. MATERIALS AND METHODS: Researchers reviewed charts for patients (n = 66) seen at a pediatric oncology clinic in a suburban academic medical center to determine engagement in developmental screening (including functioning around related areas such as speech, neurocognition, etc.) and referrals for care in these areas. RESULTS: Developmental histories were collected from all patients through admission history and physical examination (H&P), but there was no routinized follow-up. Physicians did not conduct regular developmental screening per American Academy of Pediatrics guidelines for any patients but identified n = 3 patients with needs while the psychology team routinely surveilled all patients seen during this time (n = 41) and identified n = 18 patients as having delays. DISCUSSION: Physicians did not routinely screen for development needs beyond H&P and were inconsistent in developmental follow-up/referrals. Integrated psychologists were key in generating referrals for developmental-based care. However, many oncology patients were not seen by psychologists quickly or at all, creating a significant gap in care during a crucial developmental period. CONCLUSION: The case is made for further routinization of ongoing developmental screening in pediatric oncology care.

Nurturing care practices for children with developmental disabilities in sub-Saharan Africa: A scoping review protocol.

BACKGROUND: The majority of children with neurodevelopmental disorders (NDDs) reside in low- and middle-income countries (LMICs). NDDs are a public health concern in countries in sub-Saharan Africa (SSA). Nurturing care has been recommended as a pathway for addressing the developmental needs and unlocking the full potential of children, including those with NDDs. However, little information exists on the strategies to support children with NDDs using the Nurturing Care Framework in many countries in SSA. This review aims to synthesize information on nurturing care practices for children with NDDs in SSA. The review will also determine gaps in the provision of nurturing care for children with NDDs. Further, the review will highlight the drivers of care as well as the experiences of the caregivers. METHODS: The review will be implemented in six steps: specification of the research question, identification of relevant studies, selection of studies to be included, extracting, mapping, and charting the data, collating, summarizing, and reporting the results, and stakeholder consultation. We propose a database search followed by a manual search for the literature synthesis. We will search the following electronic databases: PubMed, ScienceDirect, Scopus, Open Grey and African Journals Online (AJOL). All studies published after May 2018 to May 2023 that include relevant terms will be identified and included. The research team will develop a data extraction form for use in capturing relevant information from each of the included studies. A patterning chart that will summarize and analyze the key findings of each article will be created. DISCUSSION: We anticipate that the study will provide evidence on the existing nurturing care practices and unearth gaps in the provision of nurturing care for children with NDDs. Key determinants of care and the experiences of the parents/caregivers of children will also be identified. The study will provide key recommendations on interventions to improve the quality of care for children with NDDs. Through this study, awareness of the unmet nurturing care needs of these children will be increased. The evidence generated may assist policymakers and stakeholders in addressing the needs of children with NDDs.

Perceptions on support, challenges and needs among parents and caregivers of children with developmental disabilities in Croatia, North Macedonia and Serbia: a cross-sectional study.

BACKGROUND: Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. METHODS: We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. RESULTS: Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. CONCLUSION: Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.

Trainee advocacy for medical education on the care of people with intellectual and/or developmental disabilities: a sequential mixed methods analysis.

BACKGROUND: Medical trainees (medical students, residents, and fellows) are playing an active role in the development of new curricular initiatives; however, examinations of their advocacy efforts are rarely reported. The purpose of this study was to understand the experiences of trainees advocating for improved medical education on the care of people with intellectual and/or developmental disabilities. METHODS: In 2022-23, the authors conducted an explanatory, sequential, mixed methods study using a constructivist paradigm to analyze the experiences of trainee advocates. They used descriptive statistics to analyze quantitative data collected through surveys. Participant interviews then yielded qualitative data that they examined using team-based deductive and inductive thematic analysis. The authors applied Kern's six-step approach to curriculum development as a framework for analyzing and reporting results. RESULTS: A total of 24 participants completed the surveys, of whom 12 volunteered to be interviewed. Most survey participants were medical students who reported successful advocacy efforts despite administrative challenges. Several themes were identified that mapped to Steps 2, 4, and 5 of the Kern framework: "Utilizing Trainee Feedback" related to Needs Assessment of Targeted Learners (Kern Step 2); "Inclusion" related to Educational Strategies (Kern Step 4); and "Obstacles", "Catalysts", and "Sustainability" related to Curriculum Implementation (Kern Step 5). CONCLUSIONS: Trainee advocates are influencing the development and implementation of medical education related to the care of people with intellectual and/or developmental disabilities. Their successes are influenced by engaged mentors, patient partners, and receptive institutions and their experiences provide a novel insight into the process of trainee-driven curriculum advocacy.

Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.

Exploring Allied Health Models of Care for Children with Developmental Health Concerns, Delays, and Disabilities in Rural and Remote Areas: A Systematic Scoping Review.

BACKGROUND: Access to appropriate healthcare is essential for children's healthy development. This is lacking in rural and remote areas, impacting health outcomes. Despite efforts to improve access for these communities, to date, no review has systematically mapped the literature on allied health models of care for children with developmental needs. This scoping review seeks to address this knowledge gap. METHODS: Adhering to the PRISMA-ScR and Joanna Briggs Institute guidelines, a systematic search was conducted. A total of 8 databases (from inception to May 2023) and 106 grey literature sources were searched. Two reviewers independently undertook a two-stage screening process. Data were extracted using customised tools and narratively synthesised utilising the Institute of Medicine's quality domains. This review is registered a priori via Open Science Framework. RESULTS: Twenty-five citations were identified within the literature. Varied models of care were reported from five mostly Western countries. Models of care identified in these areas were classified as screening services, role substitution, consultative services, or online-based services. Positive impacts on quality of healthcare were reported across all quality domains (apart from safety) with the domain of effectiveness being the most commonly reported. CONCLUSIONS: Multiple models of care are currently in operation for children with developmental needs in rural and remote areas and appear to improve the quality of care. Due to complexities within, and limitations of, the evidence base, it is unclear if one model of care is superior to another. This review provides a basis for further research to explore why some models may be more effective than others.

Childhood disabilities and the cost of developmental therapies: the serviceprovider perspective.

PURPOSE: For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. METHODS: This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. RESULTS: Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. CONCLUSIONS: We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review.

BACKGROUND: Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS. METHOD: An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. RESULTS: Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support. CONCLUSIONS: This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

Urban Rural Differences on Accessing Patient- Centered Medical Home Among Children With Mental/Developmental Health Conditions/Disorders.

INTRODUCTION: To address healthcare spending growth and coordinated primary care, most states in the United States have adopted patient-centered medical homes (PCMHs). To evaluate urban rural difference on accessing PCMH among US children, particularly for children with developmental disabilities (DDs) and mental health disorders (MHDs). METHODS: This cross-sectional study used the 2016-2018 National Survey for Children's Health (NSCH). Multivariable adjusted logistic regression analyses were used to assess the association between accessing PCMHs and rurality and mental/developmental conditions/disorders. RESULTS: Children with both DDs and MHDs were statistically significantly higher in rural areas (10.9% rural vs. 8.3% urban, p ≤ .001). Children in rural areas reported higher odds of accessing PCMHs (14%) among all U.S. children, but no differences by subgroups for children with MHDs and/or DDs. Compared with children without DDs/MHDs, the reduction in access to PCMHs varies by children's health status (41% reduction for children both DDs and MHDs, 25% reduction for children with MHDs without DDs) effects. Children with MHDs/DDs were less likely to receive family-centered care, care coordination, and referrals. CONCLUSIONS: Quality improvements through PCMHs could focus on family-centered care, care coordination, and referrals. Patient-centered medical home performance measurement could be improved to better measure mental health integration and geographical differences.

Outcomes for Adults With Intellectual and Developmental Disabilities Receiving Long-Term Services and Supports: A Systematic Review of the Literature.

The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the highly complex nature of researching this topic. To support future research addressing this topic, we conducted a systematic literature review of studies addressing outcomes of adults with IDD receiving long-term services and supports. Results of this review describe current outcomes for adults with IDD who receive long-term services and supports and can be used to inform program evaluation, policy development, and future research.

Health and Education Services During the COVID-19 Pandemic Among Young Children with Autism Spectrum Disorder and Other Developmental Disabilities.

OBJECTIVE: Understanding how the COVID-19 pandemic affected children with disabilities is essential for future public health emergencies. We compared children with autism spectrum disorder (ASD) with those with another developmental disability (DD) and from the general population (POP) regarding (1) missed or delayed appointments for regular health/dental services, immunizations, and specialty services; (2) reasons for difficulty accessing care; and (3) use of remote learning and school supports. METHOD: Caregivers of children previously enrolled in the Study to Explore Early Development, a case-control study of children with ASD implemented during 2017 to 2020, were recontacted during January-June 2021 to learn about services during March-December 2020. Children were classified as ASD, DD, or POP during the initial study and were aged 3.4 to 7.5 years when their caregivers were recontacted during the pandemic. RESULTS: Over half of all children missed or delayed regular health/dental appointments (58.4%-65.2%). More children in the ASD versus DD and POP groups missed or delayed specialty services (75.7%, 58.3%, and 22.8%, respectively) and reported difficulties obtaining care of any type because of issues using telehealth and difficulty wearing a mask. During school closures, a smaller proportion of children with ASD versus another DD were offered live online classes (84.3% vs 91.1%), while a larger proportion had disrupted individualized education programs (50.0% vs 36.2%). CONCLUSION: Minimizing service disruptions for all children and ensuring continuity of specialty care for children with ASD is essential for future public health emergencies. Children may need additional services to compensate for disruptions during the pandemic.

Similar early intervention referral rates following in-person administration of the Bayley Scales of Infant and Toddler Development, 4th Edition versus Telehealth Administration of the Developmental Assessment in Young Children, 2nd Edition in the high-risk infant population.

BACKGROUND: Infants with prematurity, low birthweight, and medical comorbidities are at high risk for developmental delays and neurodevelopmental disabilities and require close monitoring. Due to the COVID-19 pandemic, high-risk infant follow-up (HRIF) programs have adapted to perform developmental assessments via telehealth. OBJECTIVES: Describe the referral rates to initiate, continue, or increase/add early intervention (EI) therapies based on in-person use of the Bayley Scales of Infant and Toddler Development, 4th Edition (BSID-IV) or telehealth use of the Developmental Assessment in Young Children, 2nd Edition (DAYC-2). METHODS: A retrospective chart review was conducted on 203 patients seen in the HRIF program at an academic medical center in Southern California. Patients were divided into in-person (BSID-IV) and telehealth (DAYC-2) assessment groups. Statistical analyses were performed to describe demographic characteristics, medical information, and referral rates for EI therapies by the types of visits. RESULTS: The in-person and telehealth groups demonstrated similar demographic and clinical characteristics and comparable referral rates for initiating EI therapies. Telehealth patients already receiving therapies were recommended to increase/add EI therapies at a higher rate compared to in-person patients. CONCLUSIONS: The BSID-IV is widely used to assess for developmental delays in the high-risk infant population, but in-person administration of this tool poses limitations on its accessibility. Telehealth administration of an alternative tool, such as the DAYC-2, can lead to similar EI referral rates as in-person administration of the BSID-IV. Increased use of telehealth developmental assessments can promote timely detection of developmental delays and minimize gaps in healthcare access.

Closing Gaps in Public Services for US Residents With Intellectual and Developmental Disabilities.

This Viewpoint describes existing public health and social service systems for persons with intellectual and developmental disabilities as they transition to adult care, barriers and opportunities faced in service access, and potential actions to narrow these gaps and enhance equity.

[Catatonia in youth with developmental disabilities: challenges in recognition and management]. / Katatonie bij jongeren met een ontwikkelingsstoornis: uitdagingen in herkenning en aanpak.

Catatonia in children and adolescents is not rare and, as in adults, has a favorable outcome, provided it is recognized and treated promptly. Nevertheless, in clinical practice we encounter several obstacles in terms of diagnosis and treatment in this population of patients. We describe a 14-year-old boy with an intellectually disability and autism spectrum disorder (ASD) in which clinicians did not diagnose catatonia until 1 year after the development of symptoms. Moreover, hesitations surrounding the correct treatment led to its delayed initiation. With this case report we aim to contribute to reduced reluctance and increased alertness in the treatment of catatonia in adolescents with developmental disorders.

Response to Referral Profile of Developmental Disabilities at a Tertiary Care Hospital in a Resource-limited Country.

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Models of care in secure services for people with intellectual and developmental disability: Implementing the Walkway to Wellness.

BACKGROUND: Changes to policy around inpatient services for people with intellectual and developmental disability (IDD) who offend, have led to a need for services to reconsider their models of care. This has led to calls for more tailored, patient-centred care models, with less reliance solely on offence-related treatment programmes which can be unsuitable for a growing proportion of patients with more complex cognitive and behavioural difficulties. In response, the Walkway to Wellness (W2W) was developed at one National Health Service Trust providing secure services to people with IDD, with the intention of delivering a more collaborative, co-produced and goal-oriented care model that was better understood by staff and patient stakeholders. AIMS: To evaluate the implementation of the W2W using Normalisation Process Theory (NPT), an evidence-based theoretical approach is used across a number of health settings. METHODS: Staff were invited to complete a short questionnaire, using the NPT informed Normalisation Measure Development questionnaire, at two time points along the implementation process. Patients were invited to complete a simplified questionnaire. Both groups were asked for their views on the W2W and the process of its implementation. RESULTS: Although the W2W was more familiar to staff at the second time point, scores on the four NPT constructs showed a trend for it being less embedded in practice, with significant results concerning the ongoing appraisal of the new model. Patient views were mixed; some saw the benefit of more goal-oriented processes, but others considered it an additional chore hindering their own perceived goals. CONCLUSION: Early involvement of all stakeholders is required to enhance the understanding of changes to models of care. Live feedback should be used to refine and revise the model to meet the needs of patients, carers and staff members.

Employment Interventions for People With Intellectual and Developmental Disabilities: A Delphi Study of Stakeholder Perspectives.

The purpose of this study was to examine the social validity of five different evidence-based and emerging pathways to employment (i.e., supported employment, customized employment, internships, apprenticeships, and postsecondary education) from the perspective of multiple stakeholders. A Delphi method was used to determine whether stakeholders are in consensus regarding the accessibility, affordability, acceptability, efficacy, and the cost-benefit ratio of these interventions. Findings indicated that all pathways were deemed socially valid via stakeholder consensus except for apprenticeships, which could not be determined as a result of limited stakeholder knowledge and experience with the pathway. Future efforts to improve employment outcomes for people with intellectual and developmental disabilities (IDD) should focus on better training for service providers and increased access to services.

A Meta-Analysis of Treatment for Self-Injurious Behavior in Children and Adolescents With Intellectual and Developmental Disabilities.

Self-injurious behavior (SIB) among children and youth with developmental disabilities has not diminished in prevalence despite the availability of effective interventions, and the impact on quality of life for people and their families is devastating. The current meta-analysis reviews SIB intervention research between 2011 and 2021 using single-case experimental designs with children and youth up to 21 years old and provides a quantitative synthesis of data from high-quality studies including moderator analyses to determine effects of participant and study characteristics on intervention outcomes. Encouraging findings include a high level of effectiveness across studies in the decrease of SIB (Tau-U = -0.90) and increase of positive behavior (Tau-U = 0.73), as well as an increase in studies (relative to prior reviews) reporting intervention fidelity, generalization, maintenance, and social validity. However, our findings shed limited light on potential moderating variables in the development of interventions for children and youth who exhibit SIB. Of the potential moderators of intervention effects, only implementer (researcher/therapist vs. parent/caregiver) and setting (clinic vs. home) were significantly associated with improved outcomes. We discuss the need for more robust involvement of natural communities of implementers in SIB intervention research to better equip them to effectively and sustainably meet the needs of people they care for. We also discuss the importance of creating systems enabling broad access for children with SIB to effective interventions in service of reducing burden for people, families, and society over time.

Measuring palliative care self-efficacy of intellectual and developmental disability staff using Rasch models.

OBJECTIVES: The objectives of this study were to evaluate the psychometric properties of a palliative care self-efficacy instrument developed for intellectual and developmental disability (IDD) staff using Rasch analysis and assess the change in palliative care self-efficacy between 2 time points using Rasch analysis of stacked data. METHODS: Staff from 4 nonprofit IDD services organizations in a US Midwestern state (n = 98) answered 11 questions with Likert-style responses at baseline and 1-month follow-up post training. Rasch analysis was performed to examine rating scale structure, unidimensionality, local independence, overall model fit, person and item reliability and separation, targeting, individual item and personal fit, differential item functioning (DIF), and change in palliative care self-efficacy between 2 time points. RESULTS: The rating scale structure improved when 5 response categories were collapsed to 3. With the revised 3 response categories, the instrument demonstrated good psychometric properties. Principal components analysis of Rasch residuals supported the assumption of unidimensionality. Model fit statistics indicated an excellent fit of the data to the Rasch model. The instrument demonstrated good person and item reliability and separation. Gender-related DIF was found in 1 item, and work tenure-related DIF in 3 items. Overall palliative care self-efficacy improved between 2 time points. SIGNIFICANCE OF RESULTS: Rasch analysis allowed for a more thorough examination of this palliative care self-efficacy instrument than classical test theory and provided information on rating scale structure, targeting, DIF, and individual persons and items. These recommendations can improve this instrument for research and practical contexts.