Audit tools for culturally safe and responsive healthcare practices with Aboriginal and Torres Strait Islander people: a scoping review.

Aboriginal and Torres Strait Islander people in Australia face disparities in accessing culturally safe and appropriate health services. While current cultural safety and responsiveness frameworks set standards for improving healthcare practices, ensuring accountability and sustainability of changes, necessitates robust mechanisms for auditing and monitoring progress. This study examined existing cultural safety audit tools, and facilitators and barriers to implementation, in the context of providing culturally safe and responsive healthcare services with Aboriginal and Torres Strait Islander people. This will assist organisations, interested in developing tools, to assess culturally responsive practice. A scoping review was undertaken using Medline, Scopus, CINAHL, Informit and PsychInfo databases. Articles were included if they described an audit tool used for healthcare practices with Aboriginal and Torres Strait Islander people. Selected tools were evaluated based on alignment with the six capabilities of the Indigenous Allied Health Australia (IAHA) Cultural Responsiveness in Action Framework. Implementation barriers and facilitators were identified. 15 papers were included. Audit tools varied in length, terminology, domains assessed and whether they had been validated or evaluated. Seven papers reported strong reliability and validity of the tools, and one reported tool evaluation. Implementation facilitators included: tool comprehensiveness and structure; effective communication; clear organisational responsibility for implementation; commitment to prioritising cultural competence; and established accountability mechanisms. Barriers included: the tool being time-consuming and inflexible; responsibility for implementation falling on a small team or single staff member; deprioritising tool use; and lack of accountability for implementation. Two of the six IAHA capabilities (respect for the centrality of cultures and inclusive engagement) were strongly reflected in the tools. The limited tool evaluation highlights the need for further research to determine implementation effectiveness and sustainability. Action-oriented tools, which comprehensively reflect all cultural responsiveness capabilities, are lacking and further research is needed to progress meaningful change within the healthcare system.

Time to Pivot: A Guide to Holistic Admissions.

ABSTRACT: As an ever-increasing number of physician assistant (PA) programs moves toward holistic admissions, a better understanding of how to achieve their stated admission goals becomes more important. With the June 2023 US Supreme Court decision effectively ending affirmative action in higher education, navigating holistic admissions is now an even greater challenge. In this article, the PA Education Association's Presidents Commission offers a guide for programs to use in implementing holistic admissions at their institutions and key considerations. Is the process mission-driven? Does it follow principles of quality improvement and incorporate ongoing assessment of that process? Using data can be a constructive and insightful way to inform the process. The authors hope that tools, resources, and recommendations offered in this article will serve as valuable resources for any program attempting to institute or improve its holistic admissions process.

Predictive Analysis of Parent Activation and Autism.

We examined parent activation in families with autistic children over time. Activation is one's belief, knowledge, and persistence in obtaining and managing one's care (e.g., patient activation) and others (e.g., parent activation) and is associated with better outcomes. Four aims were examined: the associations between baseline parent activation and follow up treatment/outcome, between changes in activation and changes in treatment/outcome, differences in activation and treatment/outcome across demographic groups (e.g., gender, race, ethnicity, and income) and comparison of results using three different assessment approaches of parent activation, the Guttman scale (standard approach) and two factor subscales (Yu et al., in J Autism Dev Disord 53:110-120, 2023). The first factor tapped into behaviors aligned with highly active, assertive parental actions (Factor 1: Activated). The second tapped into behaviors representative of uncertainty, passivity, being overwhelmed, with growing awareness of the need for activation (Factor 2: Passive). Findings varied with assessment methods applied. The two subscales assessment approach produced the strongest effect sizes. Baseline activation was related to improved child outcomes at follow-up for Factor 1: Activated and to poorer child outcomes at follow-up for Factor 2: Passive. Changes in activation were unrelated to changes in treatment/outcomes. Outcomes differed based on the activation assessment approach used. Against expectations, activation remained the same over time. Further, no differences in outcomes were observed based on race, ethnicity, or family income. The results suggest that parent activation may behave differently than patient activation based on prior studies. More research is warranted on activation of parents of autistic children.

Evaluation of major depressive disorder using 7 Tesla phase sensitive neuroimaging before and after mindfulness-based cognitive therapy.

OBJECTIVE: We applied 7 Tesla phase sensitive imaging to evaluate the impact of brain iron levels on depression severity and cognitive function in individuals with major depressive disorder (MDD) treated with mindfulness-based cognitive therapy (MBCT). METHODS: Seventeen unmedicated MDD participants underwent MRI, evaluation of depression severity, and cognitive testing before and after receiving MBCT, compared to fourteen healthy controls (HC). Local field shift (LFS) values, measures of brain iron levels, were derived from phase images in the putamen, caudate, globus pallidus (GP), anterior cingulate cortex (ACC) and thalamus. RESULTS: Compared to the HC group, the MDD group had significantly lower baseline LFS (indicative of higher iron) in the left GP and left putamen and had a higher number of subjects with impairment in a test of information processing speed. In the MDD group, lower LFS values in the left and right ACC, right putamen, right GP, and right thalamus were significantly associated with depression severity; and lower LFS in the right GP was correlated with worse performance on measures of attention. All MBCT participants experienced depression relief. MBCT treatment also significantly improved executive function and attention. MBCT participants with lower baseline LFS values in the right caudate experienced significantly greater improvement in depression severity with treatment; and those with lower LFS values in the right ACC, right caudate, and right GB at baseline performed better on measures of verbal learning and memory after MBCT. CONCLUSIONS: Our study highlights the potential contribution of subtle differences in brain iron to MDD symptoms and their successful treatment.

Parent Activation Measure for Developmental Disabilities (PAM-DD) in Caregivers of Individuals With ASD.

Activation refers to patients' belief, knowledge, ability, and persistence to manage care. The concept is adapted to parent activation in developmental disorders. This study examined the psychometrics of the Parent Activation Measure for Developmental Disabilities (PAM-DD) and factors related to parent activation in ASD. Data from 658 caregivers of children with ASD in the Autism Treatment Network Registry Call Back Assessment study were analyzed. The actual ordering of the scale items was inconsistent with the assumptions of a Guttman scaling. Factor analysis revealed two PAM-DD factors. Lower child symptom severity was related to higher Factor 1 and lower Factor 2 activation. Future studies should use caution when treating PAM-DD as a Guttman and unidimensional scale.

Being an intentional healer: cultural humility approach for African Americans.

The purpose of this commentary is to provide health professionals and educators with guiding questions to include into their practice to critically reflect on the care their African American patients receive. African American patients have historically experienced health disparities in comparison to non-African Americans. This dichotomy of care is embedded in racist ideologies and practices. A cultural humility approach is one way to inform the care of African American patients.

Facilitator Reflections on Shared Expertise and Adaptive Leadership in ECHO Autism: Center Engagement.

INTRODUCTION: Project Extension for Community Healthcare Outcomes (ECHO) is used to increase provider capacity in a wide range of health care specialties. ECHO Autism: Center Engagement is a program that promotes improvement in autism care by improving the management of autism care centers. The program's focus brought experienced clinicians together as both facilitators and participants in an ECHO series. ECHO Autism: Center Engagement facilitators devised a reflective writing exercise to prospectively study their experience leading this new curriculum. METHODS: Drawing on a qualitative thematic analysis of longitudinal reflective writing exercises from seven "Hub Team" facilitators, we describe how ECHO leaders cultivate a learning environment that emphasizes shared learning and acknowledges the expertise of ECHO participants. RESULTS: The analysis generated three main themes: (1) Hub Team facilitators valued reciprocal exchange with Spoke sites, a theme we name "shared learning," (2) Hub Team facilitators demonstrated high levels of awareness about their facilitation styles, and (3) Hub Team facilitators cultivated an interactional style they described as "all teach, all learn." DISCUSSION: Examining the experiences of ECHO facilitators produces qualitative accounts of continuing professional development that may not be captured in other program evaluation approaches. In the case of ECHO Autism: Center Engagement, facilitators cultivated an environment of shared learning, which acknowledged the expertise of both facilitators and participants. These findings are pertinent for scholars of continuing education in health professions who lead educational programs where participants and facilitators have high levels of overlap in their areas of expertise and years of experience.

Mental health and well-being of Aboriginal and Torres Strait Islander peoples in Australia during COVID-19.

In May 2020, an independent working party was convened to determine the mental health and well-being needs of Aboriginal and Torres Strait Islander peoples in Australia, in response to COVID-19. Thirty Aboriginal and Torres Strait Islander leaders and allies worked together in a two-month virtual collaboration process. Here, we provide the working party's five key recommendations and highlight the evidence supporting these proposals. Aboriginal and Torres Strait Islander self-determination and governance must be prioritised to manage the COVID-19 recovery in Aboriginal and Torres Strait Islander communities. To mitigate long-term social and economic impacts of COVID-19 to Australian society, the historical underinvestment in Aboriginal and Torres Strait Islander peoples must be reconciled. Equitable, needs-based funding is required to support strengths-based, place-based initiatives that address the determinants of health. This includes workforce and infrastructure development and effective evaluation. There is a clear, informed pathway to health and healing for Aboriginal and Torres Strait Islander peoples being enacted by Aboriginal and Torres Strait Islander leadership and community organisations; it remains to be seen how these recommendations will be implemented.

Profile of Autism Spectrum Disorder in Tuberous Sclerosis Complex: Results from a Longitudinal, Prospective, Multisite Study.

OBJECTIVE: Tuberous sclerosis complex (TSC) is highly associated with autism spectrum disorder (ASD). Objectives of the study were to characterize autistic features in young children with TSC. METHODS: Participants included 138 children followed from ages 3 to 36 months with TSC from the Tuberous Sclerosis Complex Autism Center of Excellence Research Network (TACERN), a multicenter, prospective observational study aimed at understanding the underlying mechanisms of ASD in TSC. Developmental and autism-specific assessments were administered, and a clinical diagnosis of ASD was determined for all participants at 36 months. Further analyses were performed on 117 participants with valid autism assessments based on nonverbal mental age greater than 15 months. RESULTS: Prevalence of clinical diagnosis of ASD at 36 months was 25%. Nearly all autistic behaviors on the Autism Diagnostic Observation Schedule-2 (ADOS-2) and Autism Diagnostic Interview-Revised (ADI-R) were more prevalent in children diagnosed with ASD; however, autism-specific behaviors were also observed in children without ASD. Overall quality of social overtures, facial expressions, and abnormal repetitive interests and behaviors were characteristics most likely to distinguish children with ASD from those without an ASD diagnosis. Participants meeting ADOS-2 criteria but not a clinical ASD diagnosis exhibited intermediate developmental and ADOS-2 scores compared to individuals with and without ASD. INTERPRETATION: ASD is highly prevalent in TSC, and many additional individuals with TSC exhibit a broad range of subthreshold autistic behaviors. Our findings reveal a broader autism phenotype that can be identified in young children with TSC, which provides opportunity for early targeted treatments. ANN NEUROL 2021;90:874-886.

Talking about the 'r' word: a right to a health system that is free of racism.

Australia's local, state, territory and federal governments have agreed that the 10-year life expectancy gap between Indigenous and non-Indigenous Australians will be closed by 2031. However, annual Closing the Gap reports tabled by the various prime ministers in the Australian Parliament (for the past 12 years) have consistently indicated that the life expectancy gap continues to widen. Australia has seen more than three decades of government policies since the landmark 1989 National Aboriginal health strategy. What has been missing from these policy commitments is the genuine enactment of the knowledges that are held by Indigenous Australians relating to their cultural ways of being, knowing and doing. Privileging Indigenous knowledges, cultures and voices must be front and centre in developing, designing and implementing policies and programs. The sharing of power, provision of resources, culturally informed reflective policy making, and program design are critical elements. In this paper, we provide a conceptual model of practice, working at the cultural interface where knowledges are valued and innovations can occur. This model of practice is where knowledges and cultures can co-exist, and it could be the answer to Closing the Gap in life expectancy by 2031. Despite a growing willingness and need to consider these models, there remains a deep-seated resistance to identifying and addressing institutional and systemic racism and racist attitudes, including unconscious biases held by individuals. Further, western non-Indigenous worldviews of ways of being, knowing and doing continue to dominate the decisions and actions of governments - and consequentially dominate public health policies and practices. There is an unacceptable standard approach, for and about Indigenous health instead of with Indigenous peoples, resulting in the neglectful dismissal of Indigenous knowledges and Indigenous cultures of ways of being, knowing and doing.

The Autism Treatment Network: Bringing Best Practices to All Children With Autism.

The Autism Treatment Network and Autism Intervention Research Network on Physical Health were established in 2008 with goals of improving understanding of the medical aspects of autism spectrum disorders. Over the past decade, the combined network has conducted >2 dozen clinical studies, established clinical pathways for best practice, developed tool kits for professionals and families to support better care, and disseminated these works through numerous presentations at scientific meetings and publications in medical journals. As the joint network enters its second decade continuing this work, it is undergoing a transformation to increase these activities and accelerate their incorporation into clinical care at the primary care and specialty care levels. In this article, we describe the past accomplishments and present activities. We also outline planned undertakings such as the establishment of the Autism Learning Health Network, the increasing role of family members as co-producers of the work of the network, the growth of clinical trials activities with funding from foundations and industry, and expansion of work with primary care practices and autism specialty centers. We also discuss the challenges of supporting network activities and potential solutions to sustain the network.

Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network.

OBJECTIVES: To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps. METHODS: A cross-sectional study of children 3 to 12 years old with ASD receiving care at 13 sites. Parent-reported characteristics of children with ASD were collected as outcome measures aligned with our network's aims of reducing rates of challenging behaviors, improving QoL, and ensuring receipt of recommended health services. Parents completed a survey about behavioral challenges, co-occurring conditions, health services, and the Patient-Reported Outcomes Measurement Information System Global Health Measure and the Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively. RESULTS: Analysis included 530 children. Challenging behaviors were reported by the majority of parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms, irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivity and irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-Reported Outcomes Measurement Information System Global Health Measure total score of 23.6 (3.7) was lower than scores reported in a general pediatric population. Most children had received recommended well-child (94%) and dental (85%) care in the past 12 months. CONCLUSIONS: This baseline data (1) affirmed the focus on addressing challenging behaviors; (2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability, and anxiety; and (3) identified targets for reducing severity of behaviors and strategies to improve data collection.

Families' Experiences With Family Navigation Services in the Autism Treatment Network.

BACKGROUND AND OBJECTIVES: Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. METHODS: Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. RESULTS: Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. CONCLUSIONS: Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.

Language predictors of autism spectrum disorder in young children with tuberous sclerosis complex.

BACKGROUND: Epilepsy has previously been implicated in the development of autism spectrum disorder (ASD) in the setting of tuberous sclerosis complex (TSC). However, the role of language in this relationship is unclear, and the specific relationship between ASD, epilepsy, and language development in this population has not been well-studied. OBJECTIVES: The objectives the study were to identify the role of early language in subsequent development of ASD, evaluate the impact of epilepsy as a covariate on language development, and evaluate the relationship between epilepsy, language development, and development of ASD. METHODS: This study included 154 children ages 3-36 months with TSC who were enrolled in the TSC Autism Center of Excellence Research Network (TACERN), a multicenter, prospective observational study to identify biomarkers of ASD. Developmental and autism-specific assessments were administered longitudinally. Appropriate variables from the Mullen Scales of Early Learning (MSEL), Vineland Adaptive Behavior Scales, 2nd Edition (VABS-II), and Preschool Language Scales, 5th Edition (PLS-5) were used to assess patients' language skills. At 36 months, clinical best estimate, which was based on clinical assessment and observation, was used to determine a diagnosis of ASD. RESULTS: By 12 months, all language variables on the MSEL, PLS-5, and VABS-II significantly predicted an ASD diagnosis at 36 months. Age at seizure onset was associated with language scores in that later seizure onset was associated with improved language scores on the MSEL, VABS-II, and PLS-5. Seizure onset prior to 6 months was associated with a diagnosis of ASD at 36 months. Higher seizure frequency negatively correlated with language scores at 12 months and beyond. Higher seizure frequency was also associated with an ASD diagnosis at 36 months. When looking at the relationship between epilepsy, language, and ASD diagnosis, by 18 months, language scores were more associated with a later ASD diagnosis at 36 months compared with age at seizure onset, which was a better predictor of later ASD diagnosis earlier in development. CONCLUSION: Analysis of language variables and epilepsy characteristics from 6 to 36 months and ASD diagnosis at 36 months revealed significant relationships between all three variables. While the direction of these relationships needs further research, epilepsy, language, and the development of ASD are integrally related in young children with TSC.

Transforming an Autism Pediatric Research Network into a Learning Health System: Lessons Learned.

INTRODUCTION: The Autism Speaks Autism Treatment Network that serves as the Autism Intervention and Research Network on Physical Health (ATN/AIR-P) has a mission to improve the health and well-being of children with Autism Spectrum Disorder and determine the best practices that lead to improved outcomes and expedite the translation of findings to practice. To better achieve this mission, the ATN/AIR-P is engaging in a design process to transition to a Learning Network (LN), the Autism Learning Health Network. The purpose of this paper is to: (1) make the medical and patient communities aware of an Autism LN that is based on the Institute of Medicine's definition of a Learning Health System; (2) describe how and why the ATN/AIR-P transformed to an LN; and (3) share lessons learned that might inform the transition of future existing networks surrounding other conditions. METHODS: Design methods included: an in-person design session with various stakeholders, the development of a Key Driver Diagram and redesign of organizational processes, network governance, and data collection and analytics. RESULTS: We realized many benefits in making the transition to an LN along with many lessons that can inform the design and implementation of the LN model when transforming existing networks to learning health systems. CONCLUSIONS: Transitioning a well-established research network requires a complex redesign of existing processes, data infrastructure, and cultural shifts compared with developing a new LN. We identified factors that may inform the transition of future established networks to expedite the process.

Impacting development in infants with tuberous sclerosis complex: Multidisciplinary research collaboration.

The Tuberous Sclerosis Complex Autism Center of Excellence Network (TACERN) is a 6-site collaborative conducting longitudinal research on infants with tuberous sclerosis complex (TSC), focused on identifying early biomarkers for autism spectrum disorder (ASD). A multidisciplinary research team that includes the specialties of psychology, neurology, pediatrics, medical genetics, and speech-language pathology, its members work together to conduct studies on neurological status, brain structure and function, neurodevelopmental phenotype, and behavioral challenges in this population. This article provides insights into the roles of the multidisciplinary multisite team and lessons learned from the collaboration, in terms of research as well as training of future researchers and clinicians. In addition, the authors detail the major findings to date, including those related to the identification and measurement of early symptoms of ASD, relationship between seizures and early development, and early biomarkers for epilepsy and developmental delay in infants and young children with TSC. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

A feasibility study of the Nativis Voyager® device in patients with recurrent glioblastoma in Australia.

AIM: Evaluation of the Nativis Voyager®, an investigational medical device, as monotherapy for recurrent glioblastoma (rGBM). MATERIALS & METHODS: A total of 15 patients with rGBM were treated with one of two Voyager ultra-low radio frequency energy cognates: A1A or A2HU. Safety and clinical utility were assessed every 2-4 months. RESULTS: Median overall survival was 8.04 months in the A1A arm and 6.89 months in the A2HU arm. No serious adverse events associated with Voyager were reported. No clinically relevant trends were noted in clinical laboratory parameters or physical exams. CONCLUSION: The data suggest that the Voyager is safe and feasible for the treatment of rGBM.

Identifying Associations Among Co-Occurring Medical Conditions in Children With Autism Spectrum Disorders.

OBJECTIVE: Children with autism spectrum disorder (ASD) have a high prevalence of co-occurring medical conditions, including speech, sleep, and gastrointestinal disorders (constipation and feeding difficulties); developmental delay; attention deficit/hyperactivity disorder; hypotonia; epilepsy; anxiety; disruptive behavior; pica; and eczema. Less is known about whether these commonly coexist in the same children. We sought to determine clinically meaningful, statistically significant associations among co-occurring medical conditions in children with ASD that could lead to better understanding, identification, and treatment of these disorders. METHODS: We studied 2114 children with ASD aged 17 months to 5years and 1221 children aged 6 to 17years at 15 Autism Speaks Autism Treatment Network Registry sites. Clinician-reported diagnoses and problems were grouped into 12 core conditions. We determined the observed prevalence (O) of co-occurring conditions and the estimated expected prevalence (E) across the network, adjusting for sitevariability in the prevalence of individual conditions. Pvalues were calculated using a Cochran-Mantel-Haenszel test stratified by site. We identified pairs of conditions co-occurring more frequently than expected (O/E >1) and less frequently than expected (O/E <1) and highlighted statisticallysignificant differences. RESULTS: Among the 66 condition pairs for each age group, we confirmed previously identified associations, such as sleep disorders and anxiety symptoms, in older children. We found some associations not previously described, including feeding with sleep disorders (younger children only), constipation with sleep disorders, feeding with speech disorders, and constipation with speech disorders. CONCLUSIONS: We have identified new associations among co-occurring medical conditions in children with ASD, offering the potential to examine common pathways.