Intellectual disability health content within the nursing curriculum: an audit of what our future nurses are taught

Background: Individuals with intellectual disability experience chronic and complex health issues, but face considerable barriers to healthcare. One such barrier is inadequate education of healthcare professionals

‘SEEKING BALANCE’ Australian consumer experiences of antipsychotic discontinuation: a mixed methods study

© 2014 Dr. Carmela SalomonDespite well-publicised high rates of antipsychotic discontinuation, to date little research has been conducted into the lived experience of stopping. This study uses a dialectic mixed methods approach to explore how people make sense of their attempts to stop antipsychotic medication and the societal conditions framing these attempts. In the context of an increasingly taken for granted biomedical mental illness discourse, this thesis problematises the ‘non-compliant’ consumer identity and brings into focus the complex decisional influences that underlie many discontinuation decisions. The thesis does not seek to assert a position on the value or use of antipsychotic medication, but instead tries to understand different medication related choices made by participants. This thesis responds to calls from within the consumer community for robust discussion around antipsychotic discontinuation that is framed by curiosity rather than paternalism. It is timely in light of increasing antipsychotic prescription rates, known high discontinuation rates and a lack of investment by the larger research community, to date, into peoples lived experiences during this time. The decision to focus exclusively on consumer voices reflects the transformative intent of the thesis to counterbalance both historical and contemporary experiences of consumer marginalisation from the research agenda. While the idea of this thesis sprung initially out of my work as a psychiatric nurse, I hope that its findings may be of interest to a broad range of consumers, clinicians, family members and policy makers. A dialectic mixed methodology is used to investigate both broad patterns and particularities of antipsychotic discontinuation. The preliminary self-administered survey tool, completed by 98 participants, elicited both qualitative and quantitative data relating to the context, experience and outcomes of past discontinuation attempts. In-depth interviews were then conducted with 20 of the survey respondents to develop a deeper explanatory and contextual understanding of their experiences. An Adornian critical theory approach to identity and dialectics informed the data analysis. Contrary to familiar portrayals of people who discontinue their antipsychotics as ‘lacking in insight’ or ‘non-compliant’, the majority of participants in this study described antipsychotic discontinuation as a conscious choice and were able to articulate contextualised and personally meaningful drivers behind this decision. These drivers included: problems in the therapeutic alliance; alternative mental health paradigms and treatment preferences; and the subjective balancing of cons above pros when assessing the impact of antipsychotics on life quality. Other key findings from the study included the strong secrecy and isolation that surrounded many discontinuation attempts, experiences of antipsychotic discontinuation syndromes and polarised discontinuation outcomes. The gaps between expected stereotypes of the ‘non-compliant’ or ‘insightless’ consumer and participants lived experiences are explored in terms of societal expectations of ‘proper’ patient and clinician roles, and contrasting ontological understandings of the nature of mental distress. I argue the following points in relation to practice improvement around antipsychotic discontinuation: - The widespread implicit policy of ‘zero tolerance’ to antipsychotic discontinuation described in this study may be contributing to a culture of consumer secrecy around discontinuation. - Adopting a more collaborative, transparent and consumer driven approach to discontinuation may help to decrease consumer isolation during discontinuation and mitigate potential harms. In order for such a shift to take place, however, the capacity of our mental health system to tolerate risk and support consumer choice will need to be re-imagined. - Greater research attention could be placed on antipsychotic discontinuation syndromes, and clinicians should begin to routinely provide consumers with access to this information from the point of prescription onwards. This thesis suggests that clinical focus on ‘compliance’ may not be an effective model for respectfully approaching decisions relating to antipsychotic medication. Clinicians and policy makers are invited to seek more genuinely transparent, collaborative and value-neutral pathways to support consumers who are contemplating or undertaking antipsychotic discontinuation

Prescribing psychotropic drugs to adults with an intellectual disability

Mental illness is common in people with intellectual disability. They may also have physical health problems which can affect their mental state. Difficulties in communication can contribute to mental health problems being overlooked. These may present with changes in behaviour. Psychological management is usually preferable to prescribing psychotropic drugs. Behavioural approaches are the most appropriate way to manage challenging behaviour. If a drug is considered, prescribers should complete a thorough diagnostic assessment, exclude physical and environmental contributions to symptoms, and consider medical comorbidities before prescribing. Where possible avoid psychotropics with the highest cardiometabolic burden. Prescribe the minimum effective dose and treatment length, and regularly monitor drug efficacy and adverse effects. There is insufficient evidence to support the use of psychotropics for challenging behaviour. They should be avoided unless the behaviour is severe and non-responsive to other treatments

‘Get Healthy!’ physical activity and healthy eating intervention for adults with intellectual disability: results from the feasibility pilot

Background: People with intellectual disabilities (ID) experience high rates of lifestyle related morbidities, in part due to lack of access to tailored health promotion programmes. This study aimed to assess the feasibility and preliminary efficacy of a tailored healthy lifestyle intervention, Get Healthy! Methods: Get Healthy! is a 12-week physical activity and healthy eating programme designed to address lifestyle-related risks for adults with mild-moderate ID. The feasibility pilot was designed to assess subjective participant experience and programme feasibility across: recruitment and screening, retention, session attendance and engagement, adverse events, and practicality and reliability of outcome procedures. Exploratory programme efficacy was assessed across the following measures: anthropometry (body mass index, weight, waist circumference), cardiovascular fitness, physical strength, dietary intake, healthy literacy, and quality of life. Results: Six participants with moderate ID and two carer participants completed the feasibility trial, representing a 100% retention rate. Qualitative data indicated the programme was well received. Participants with ID attended 75% of sessions offered and displayed a high level of engagement in sessions attended (91% mean engagement score). While most data collection procedures were feasible to implement, several measures were either not feasible for our participants, or required a higher level of support to implement than was provided in the existing trial protocol. Participants with ID displayed decreases in mean waist circumference between baseline and endpoint (95% CI: − 3.20, − 0.17 cm) and some improvements in measures of cardiovascular fitness and physical strength. No changes in weight, body mass index, or objectively measured knowledge of nutrition and exercise or quality of life were detected from baseline to programme endpoint. Dietary intake results were mixed. Discussion: The Get Healthy! programme was feasible to implement and well received by participants with moderate ID and their carers. Exploratory efficacy data indicates the programme has potential to positively impact important cardiometabolic risk factors such as waist circumference, cardiovascular fitness, and physical strength. Several of the proposed data collection instruments will require modification or replacement prior to use in a sufficiently powered efficacy trial. Trial registration: ACTRN: ACTRN12618000349246. Registered March 8th 2018—retrospectively registered, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=374497 UTN: U1111-1209–3132

‘Get Healthy!’ A physical activity and nutrition program for older adults with intellectual disability: pilot study protocol

Abstract Background Older adults with intellectual disability have high rates of lifestyle-related illness yet remain poorly engaged in physical activity and nutrition interventions. There is a need to clarify what types of healthy lifestyle interventions are feasible and effective to implement in this population and how outcome measures can best be tracked. This paper describes the pilot feasibility study protocol for implementing a 12-week physical activity and healthy eating program, ‘Get Healthy!’ with older adults with intellectual disability. Methods The primary study aims are to assess the feasibility of implementing and monitoring the ‘Get Healthy!’ program with adults with mild to moderate intellectual disability, aged 40 years and over, and their carers. Secondary study aims are to assess the impact of the intervention across the following parametres: body mass index, waist circumference, cardiovascular fitness, physical activity (amount and intensity) and sedentary behaviours, resting blood pressure, functional strength/capacity, dietary intake (energy intake, food group consumption and diet quality), dietary and physical activity knowledge, and quality of life. Between 8 and 10 participants in total will be recruited into the 12-week program that will be run in metropolitan NSW, Australia. A combination of objective and subjective measures will be used to assess program feasibility and impact at set timepoints (baseline, mid and end-program). Discussion Results from the feasibility pilot will be used to refine the study methodology and ‘Get Healthy!’ program content for future use in a sufficiently powered trial. Findings may be of interest to a broad range of disability and allied health workers engaged in supporting and monitoring healthy lifestyle change in adults with intellectual disability. Trial registration ACTRN: ACTRN12618000349246. Registered March 8, 2018- Retrospectively registered, UTN: U1111-1209-3132

Intellectual disability content within pre-registration nursing curriculum: how is it taught?

BACKGROUND: Despite experiencing higher rates of physical and mental health conditions compared with the general population, people with intellectual disability face inequitable access to healthcare services. Improving education of healthcare professionals is one way to reduce these inequalities. OBJECTIVE: To determine how intellectual disability content is taught within Australian nursing schools. DESIGN: A two-phase audit of Australian nursing curricula content was conducted using an interview and online survey. SETTING: Nursing schools Australia-wide providing pre-registration courses. PARTICIPANTS: For Phase 1, course coordinators from 31 nursing schools completed an interview on course structure. Teaching staff from 15 schools in which intellectual disability content was identified completed an online survey for Phase 2. METHODS: Methods used to teach intellectual disability content and who taught the content were audited using an online survey. RESULTS: Across the 15 schools offering intellectual disability content, lectures were the most common teaching method (82% of units), followed by tutorials (59%), workshops (26%), then other methods (e.g. e-learning; 12%). Approximately three-quarters of intellectual disability teaching used some problem-and/or enquiry-based learning. Only one nursing school involved a person with intellectual disability in delivering teaching content. Six (19%) participating schools identified staff who specialise in intellectual disability, and seven (23%) identified staff with a declared interest in the area. CONCLUSION: While some nursing schools are using diverse methods to teach intellectual disability content, many are not; as a result, nursing students may miss out on acquiring the attributes which enable them to address the significant health inequalities faced by this group. A specific deficit was identified relating to inclusive teaching and clinical contact with people with intellectual disability

Increased delay from initial concern to diagnosis of autism spectrum disorder and associated health care resource utilization and cost among children aged younger than 6 years in the United States.

BACKGROUND: Prolonged delays between first caregiver concern and autism spectrum disorder (ASD) diagnosis have been reported, but associations between length of time to diagnosis (TTD) and health care resource utilization (HCRU) and costs have not been studied in a large sample of children with ASD. OBJECTIVE: To address these informational gaps in the ASD diagnostic pathway. METHODS: This retrospective, observational, single cohort analysis of Optums administrative claims data from January 1, 2011, to December 31, 2020, included commercially insured children who had 2 or more claims for an ASD diagnosis (earliest diagnosis designated as the index date), were between the ages of older than 1.5 years and 6 years or younger at index date, and were continuously enrolled for up to 48 months before and for 12 months after the index date. Two cohorts (between the ages of older than 1.5 years and 3 years or younger and between the ages of older than 3 years and 6 years or younger at ASD diagnosis) were divided into shorter (less than median) and longer (greater than or equal to median) TTD around each cohort median TTD calculated from the first documented ASD-related concern to the earliest ASD diagnosis, because TTD may vary by age at diagnosis. This exploratory analysis compared all-cause and ASD-related HCRU and costs during a 12-month period preceding ASD diagnosis among children with shorter vs longer TTD. RESULTS: 8,954 children met selection criteria: 4,205 aged 3 years or younger and 4,749 aged older than 3 years at diagnosis, with median TTD of 9.5 and 22.1 months, respectively. In the year preceding ASD diagnosis, children with longer TTD in both age cohorts experienced a greater number of all-cause and ASD-related health care visits compared with those with shorter TTD (mean and median number of office or home visits were approximately 1.5- and 2-fold greater in longer vs shorter TTD groups; P < 0.0001). The mean all-cause medical cost per child in the year preceding ASD diagnosis was approximately 2-fold higher for those with longer vs shorter TTD ($5,268 vs$2,525 in the younger and $5,570 vs$2,265 in the older cohort; P < 0.0001 for both). Mean ASD-related costs were also higher across age cohorts for those with longer vs shorter TTD ($2,355 vs$859 in the younger and $2,351 vs$1,144 in the older cohort; P < 0.0001 for both). CONCLUSIONS: In the year prior to diagnosis, children with longer TTD experienced more frequent health care visits and greater cost burden in their diagnostic journey compared with children with shorter TTD. Novel diagnostic approaches that could accelerate TTD may reduce costs and HCRU for commercially insured children. DISCLOSURES: This study was funded by Cognoa, Inc. Optum received funding from Cognoa to conduct this study. Dr Salomon is an employee and holds stock options of Cognoa, Inc. Dr Campbell was an employee of Cognoa, Inc., at the time this study was conducted. Dr Duhig was an employee of Cognoa, Inc., at the time the study was conducted and holds stock options. Dr Vu, Ms Kruse, Mr Gaur, and Ms Gupta are employees and/or stockholders of Optum. Dr Tibrewal was an employee of Optum at the time the research for this study was conducted. Dr Taraman is an employee and holds stock options of Cognoa, Inc., receives consulting fees from Cognito Therapeutics, volunteers as a board member of the American Academy of Pediatrics California and Orange County Chapter, is a paid advisor for MI10 LLC, and owns stock options of NTX, Inc., and HandzIn

An Introduction to Artificial Intelligence in Developmental and Behavioral Pediatrics

AbstractTechnological breakthroughs, together with the rapid growth of medical information and improved data connectivity, are creating dramatic shifts in the health care landscape, including the field of developmental and behavioral pediatrics. While medical information took an estimated 50 years to double in 1950, by 2020, it was projected to double every 73 days. Artificial intelligence (AI)-powered health technologies, once considered theoretical or research-exclusive concepts, are increasingly being granted regulatory approval and integrated into clinical care. In the United States, the Food and Drug Administration has cleared or approved over 160 health-related AI-based devices to date. These trends are only likely to accelerate as economic investment in AI health care outstrips investment in other sectors. The exponential increase in peer-reviewed AI-focused health care publications year over year highlights the speed of growth in this sector. As health care moves toward an era of intelligent technology powered by rich medical information, pediatricians will increasingly be asked to engage with tools and systems underpinned by AI. However, medical students and practicing clinicians receive insufficient training and lack preparedness for transitioning into a more AI-informed future. This article provides a brief primer on AI in health care. Underlying AI principles and key performance metrics are described, and the clinical potential of AI-driven technology together with potential pitfalls is explored within the developmental and behavioral pediatric health context

Type I Spinal Muscular Atrophy patients treated with nusinersen: 4 year follow-up of motor, respiratory and bulbar function

Background: We report the 4 year follow up in type I patients treated with nusinersen and the changes in motor, respiratory and bulbar function in relation to subtype, age and SMN2 copy number. Methods: The study included SMA 1 patients with at least one assessment after 12, 24 and 48 months from the first dose of nusinersen. The assessments used were Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) and the Hammersmith Infant Neurological Examination (HINE-2). Results: Forty-eight patients, with age ranging from 7 days and 12 years (mean 3.3, SD 3.6) were included in the study. The CHOP INTEND and HINE-II score significantly increased between baseline and 48 months (p<0.001). When age at starting treatment subgroups (<210 days, <2 years, 2-4 years, 5-11 years, >12 years) were considered, the CHOP INTEND increased significantly in patients younger than 4 years at treatment, while the HINE-2 increased significantly in patients younger than 2 years at treatment. In a mixed model analysis, age, nutritional and respiratory status were predictive of changes on both scales while SMN2 copy number and decimal classification were not. Conclusions: Our results confirm the safety profile previously reported and support the durability of the efficacy of nusinersen at 4 years with an overall stability or mild improvement and no evidence of deterioration over a long period of time