Assessment of functioning in ADHD according to World Health Organization standards: First revision of the International Classification of Functioning, Disability and Health Core Sets.

AIM: To conduct the first revision of the World Health Organization International Classification of Functioning, Disability and Health (ICF) Core Sets for attention-deficit/hyperactivity disorder (ADHD). METHOD: A Delphi-like method was used, integrating evidence from stakeholder feedback and developing and piloting the ADHD ICF Core Set platform to inform revisions to the ADHD Core Sets. RESULTS: A total of 27 second-level ICF codes were added to the comprehensive ADHD Core Set: body functions of temperament and personality, and basic sensory functions; activities and participation in terms of learning to read and write, spoken communication, community life, religion and spirituality, education, economy, and human rights; environmental factors for domestic animals; and several societal services. The revised comprehensive Core Set contains 98 ICF codes: 18 body function codes; 47 activities and participation codes; and 33 environmental factor codes. Extensive changes were also made to the age-appropriate brief Core Sets to allow their independent use in research and clinical practice. INTERPRETATION: Although substantially expanded, the revised ICF Core Sets better reflect the lived experience of individuals with ADHD and clinical implementation preferences than the initial sets. We recommend further feasibility and validation studies of these Core Sets with the goal of optimizing their acceptance and practicability, and strengthening their evidence base.

How can we reach long-lasting inclusive participation for all? A vision for the future.

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

Reconciling the seemingly irreconcilable: The WHO's ICF system integrates biological and psychosocial environmental determinants of autism and ADHD: The International Classification of Functioning (ICF) allows to model opposed biomedical and neurodiverse views of autism and ADHD within one framework.

Neurodevelopmental disorders (NDDs), such as autism and ADHD, are behaviorally defined adaptive functioning difficulties arising from variations, alterations and atypical maturation of the brain. While it is widely agreed that NDDs are complex conditions with their presentation and functional impact underpinned by diverse genetic and environmental factors, contemporary and polarizing debate has focused on the appropriateness of the biomedical as opposed to the neurodiverse paradigm in framing conceptions of these conditions. Despite being largely overlooked by both research and practice, the International Classification of Functioning Disability and Health (ICF) endorsed by the World Health Organization in 2001 views functioning dynamically, offering a framework for investigating, assessing and treating NDDs holistically. Exemplified by autism and ADHD, we argue that the ICF provides not only a multitude of opportunities in accounting for the environmental determinants in researching and clinically managing NDDs, but opportunities for harmonizing the seemingly irreconcilable biomedical and neurodiverse paradigms. Also see the video abstract here: https://youtu.be/YwuWPDUOs5k.

Sociocultural factors associated with detection of autism among culturally and linguistically diverse communities in Australia.

BACKGROUND: The age at which parents or caregivers first develop concerns about their child's development has significant implications on formal diagnosis and intervention. This study aims to determine the sociocultural factors that are associated with the age and type of first concern reported by parents of autistic children among culturally and linguistically diverse (CALD) communities in Australia. We also assessed whether sociocultural factors predict autism traits measured in terms of social affect (SA), restricted and repetitive behaviours (RRB), and calibrated severity scores (CSS). METHODS: This study is a secondary data analysis of the data collected from six Autism Specific Early Learning and Care Centres (ASELCCs) as part of the Autism Co-operative Research Centre (CRC) program between 2015 and 2019. Data analysed in this study included a family history questionnaire with sociodemographic and sociocultural information, parent-reported age and type of first concern, and clinician/researcher administered Autism Diagnostic Observation Schedule - Second Edition (ADOS-2) which includes standardised domain-wise scores of social affect (SA) and restricted and repetitive behaviours (RRB) as well as calibrated severity scores (CSS), a measure of severity of autism. Primary analysis included multivariable linear regression models to examine the predictive influence of sociodemographic and sociocultural factors on the dependant variables of age of concern (AOC) and the autism traits (SA, RRB, and CSS). RESULTS: The mean AOC in the sample was 18.18 months and the most common concerns were speech/language delay, limited social interaction, and hyperactivity/behavioural changes. The multivariable linear regression models showed factors such as increase in age of child, those from a CALD background, annual family income, sibling's autism diagnosis, and developmental concerns to be significantly associated with parental AOC. Additionally, we also found that increase in child's age and CALD status to be significant predictors of autism trait (RRB) and severity measured in terms of the CSS score. Further, females (compared to males) were associated with higher difficulties with social communication and interaction skills. CONCLUSION: Understanding key factors that contribute to early identification of autism can help tailor awareness programs for parents and caregivers, whilst also informing the development of services focused on serving all CALD communities.

Preventing suicide in post-secondary students: a scoping review of suicide prevention programs.

Suicide among students enrolled in post-secondary education, including university or college, is a major public health concern. Previous research has examined the effectiveness of suicide prevention programs for this population. However, the effective elements of these interventions remain unknown. This study reviewed the literature on suicide prevention programs for post-secondary students, exploring and identifying those elements likely contributing to their effectiveness. A scoping review process was undertaken exploring suicide prevention programs for post-secondary students. Methodological quality of the articles was assessed, and content analysis was used to explore the programs and their effective elements. Twenty seven articles were included in this review, covering a variety of approaches. Gatekeeper training programs were the most common type of suicide prevention program. Programs for post-secondary students may be effective in improving student rates of engagement with mental health services and were associated with greater knowledge, and help-seeking attitudes and behaviors, and gatekeeper-related outcomes. While evidence was found supporting the effectiveness of some interventions such as gatekeeper programs to influence suicide-related knowledge, attitudes and behaviour, further and more rigorous research surrounding suicide prevention programs for post-secondary students is required, with a particular emphasis on student outcomes.

The efficacy of the "Talk-to-Me" suicide prevention and mental health education program for tertiary students: a crossover randomised control trial.

Despite suicide ideation being one of the most frequently reported health issues impacting tertiary students, there is a paucity of research evaluating the efficacy of preventive interventions aimed at improving mental health outcomes for students studying at two tertiary institutes. The current study evaluated the efficacy of the "Talk-to-Me" Mass Open Online Course (MOOC) in improving tertiary students' abilities to support the mental health of themselves and their peers via a randomised controlled trial design, comparing them to a waitlist control group. Overall, 129 tertiary students (M = 25.22 years, SD = 7.43; 80% female) undertaking a health science or education course at two Western Australian universities were randomly allocated to either "Talk-to-Me" (n = 66) or waitlist control (n = 63) groups. The participants' responses to suicidal statements (primary outcome), knowledge of mental health, generalised self-efficacy, coping skills, and overall utility of the program (secondary outcomes) were collected at three timepoints (baseline 10-weeks and 24-weeks from baseline). Assessment time and group interaction were explored using a random-effects regression model, examining changes in the primary and secondary outcomes. Intention-to-treat analysis (N = 129) at 10-weeks demonstrated a significant improvement in generalised self-efficacy for "Talk-to-Me" compared to the control group (ES = 0.36, p = .04), with only the "Talk-to-Me" participants reporting increased knowledge in responding to suicidal ideation (primary outcome). This change was sustained for 24 weeks. Findings provide preliminary evidence suggesting that the "Talk-to-Me" MOOC can effectively improve tertiary students' mental health and knowledge of how to support themselves and others in distress. ACTRN12619000630112, registered 18-03-2019, anzctr.org.au.

Exploration of caregiver experiences of reported first signs of autism.

AIM: This study explored caregiver-reported first signs of autism and caregiver experiences of reporting these signs to health professionals using a multiple methods approach. BACKGROUND: Within the Australian context, children who have been diagnosed with autism represent a significant proportion of individuals requiring access to disability services. Due to the importance of accessing early intervention services to support future outcomes, it is vital that first signs are noticed, reported, and the diagnosis process begun as soon as possible. METHOD: Phase 1 of the study included a secondary analysis of a survey of caregivers, while phase 2 consisted of focus groups of caregivers of children on the autism spectrum. RESULTS: Survey data indicated that most children were aged 12-18 months when first signs were noticed, with first signs noticed earlier in females than males. Children were age 2-6 years when caregivers sought advice and received a diagnosis. Uncertainty and a lack of information often left caregivers feeling frustrated and under-supported when seeking advice and diagnosis. Despite first signs being recognised early by caregivers, barriers to information and seeking help and support resulted in significant delays in receiving a diagnosis. CONCLUSIONS: The study provides valuable consideration of the caregiver perspective regarding reported first signs of autism and the additional challenges faced by caregivers living in regional and rural areas. By being more informed of what caregivers first notice, health professionals may also be able to provide better support and advice to caregivers in regard to access to diagnosis and early intervention services.

Assessing functioning for individuals with neurodevelopmental conditions: Current clinical practice in Australia.

BACKGROUND: In the disability sector globally, and specifically in Australia, assessments of functioning have become key to diagnostic processes, and accessing therapy and funding. Over half of all individuals accessing support through Australia's National Disability Insurance Scheme have a neurodevelopmental condition diagnosis. Little is known about assessments of functioning for this population. METHODS: A mixed methods online survey was designed to understand the current assessment of functioning practices (including clinical contexts, concepts being assessed, and assessment methods) and barriers and facilitators to clinicians using best practice. Results were analysed descriptively, and differences between professions calculated where possible. Content analysis was used to explore qualitative comments. RESULTS: Clinicians from various medical and allied health backgrounds completed the survey (n = 93), with varying ranges of age, experience, and education. Clinicians reported that they assessed functioning across age, setting, sector, funding body, and individuals with a wide variety of diagnoses. Missing from current practice is a clear transdisciplinary conceptualisation of functioning. The largest barriers to best practice were limited time, large caseloads, availability of appropriate tools, and lack of clarity from funding bodies. CONCLUSIONS: Missing from current practice is a clear transdisciplinary conceptualisation of functioning.These results will help inform steps forward to improve assessment of functioning practices to ensure that all individuals receive appropriate and sufficient support.

KONTAKT® social skills group training for Australian adolescents with autism spectrum disorder: a randomized controlled trial.

While there is a large body of evidence drawn from randomised controlled trials supporting the efficacy of SSGT in autistic adolescents, the control arms of these studies are almost exclusively treated either as usual or waitlist. Addressing this limitation, 90 verbal autistic adolescents (70% male) aged 12-17 years (M = 13.77, SD = 1.6) with IQ > 70 participated in this pragmatic two-armed randomised controlled trial design study evaluating the efficacy of sixteen 90-min sessions of SSGT KONTAKT® (n = 46) in comparison to a manualised interactive group cooking programme (n = 44) of equal dosage controlling for the potentially confounding effects of exposure to a social group context. The primary outcome was the adolescents' progress towards achieving their personally meaningful social goals at follow-up. Secondary outcomes were changes in autistic traits, quality of life, facial emotion recognition skills, social anxiety, and loneliness. Assessments were conducted at baseline, post intervention and 12-week follow-up. The interaction between time point and group allocation was investigated through a random-effects regression model (linear mixed model) to examine changes in the dependent outcomes. While intention-to-treat analysis (N = 90) demonstrated that both SSGT (ES = 1.36, p < .001) and active control (ES = 1.10, p < .001) groups made progress towards their personally meaningful social goals at follow-up, KONTAKT® participants demonstrated greater progress in social goal attainment than their peers in the active control group (ES = 0.35, p = .04). Findings suggest that KONTAKT® is efficacious in supporting autistic adolescents to achieve their personally meaningful social goals compared to other prosocial group activities.Trial registration: (1) Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12617001117303, registered 31 July 2017, anzctr.org.au; (2) ClinicalTrials.gov: NCT03294668 registered 22 September 2017, https://clinicaltrials.gov .

Construct validity, reliability, and responsiveness of the Wrist Position Sense Test for use in children with hemiplegic cerebral palsy.

INTRODUCTION: We investigate the construct validity, test re-test reliability, and responsiveness of the Wrist Position Sense Test (WPST) for children with hemiplegic cerebral palsy (CP). METHODS: Twenty-eight children with spastic hemiplegic CP [mean age 10.8 years; SD 2.4 years] and 39 typically developing (TD) children [mean age 11 years; SD 2.9 years] participated in a cross-sectional study to investigate construct validity and association with an upper limb activity measure, the Box and Block Test (BBT). Twenty-two TD children were tested at a second time-point to examine reliability. Test responsiveness was determined by random allocation of 17 children with CP to a treatment (n = 10) or control (n = 7) group with assessments completed at four time-points. RESULTS: Significantly greater differences were observed in mean error of indicated wrist position (p < 0.01) in children with CP at baseline (M = 21.6°, SD = 21.6°) than in TD children (M = 12.8°, SD = 11.0°). Larger WPST errors were associated with poorer performance on the BBT (p < 0.01) indicating a substantial association, and there were no consistent differences between time-points indicating test re-test reliability within a TD population. The WPST demonstrated responsiveness to intervention with a statistically significant reduction in mean error following treatment (p < 0.001), not seen in the control group (p = 0.28). CONCLUSION: The WPST demonstrated construct validity in this preliminary study. Scores were associated with an upper limb activity measure, and scores changed significantly following somatosensory training. These findings support further research and future psychometric investigation of the WPST in children with CP. KEY POINTS FOR OCCUPATIONAL THERAPY: This study provides psychometric knowledge about the WPST tool The WPST shows promise as a discriminative measure with preliminary evidence of responsiveness and intra-rater reliability Until further testing, the WPST can be used cautiously in future research studies to measure wrist position sense.

The Power of Playgroups: Key components of supported and therapeutic playgroups from the perspective of parents.

INTRODUCTION: Playgroups are community-based programs for children and families aiming to improve child outcomes, enhance family and community networks and increase parenting capacity. Despite the prevalence of playgroups in Australian communities there is a lack of research clearly articulating the key components of playgroups, specifically from the perspective of parents attending these groups. This study aimed to identify the key components of supported and therapeutic playgroups impacting on perceived effectiveness from the perspective of parents with a child with a developmental delay and/or disability. METHODS: This study explored the experiences of 23 parents attending supported or therapeutic playgroups using a qualitative interpretive phenomenological approach. Data were collected through three focus groups and seven individual interviews and analysed using Colaizzi's (1978) qualitative method of data analysis. RESULTS: Findings indicated playgroup components that most strongly impacted on perceived effectiveness were feeling accepted; providing opportunities for child development, socialisation and enjoyment; and enhancing parental knowledge and skills. Findings reinforced the importance of family centred practice and facilitating peer support for families of children with developmental delay and/or disability. CONCLUSION: Supported and therapeutic playgroups emerged as a valuable model for parents of children with developmental delays and/or disabilities but require an interplay of specific facilitator, parent and child characteristics to be effective. This study contributes to the understanding of key components of successful supported and therapeutic playgroup models, highlighting the importance of engaging consumers in developing evidence-based meaningful interventions for children with developmental delay and/or disabilities and their families.

The contribution of environmental exposure to the etiology of autism spectrum disorder.

Autism spectrum disorder (ASD) is a neurodevelopmental condition of heterogeneous etiology. While it is widely recognized that genetic and environmental factors and their interactions contribute to autism phenotypes, their precise causal mechanisms remain poorly understood. This article reviews our current understanding of environmental risk factors of ASD and their presumed adverse physiological mechanisms. It comprehensively maps the significance of parental age, teratogenic compounds, perinatal risks, medication, smoking and alcohol use, nutrition, vaccination, toxic exposures, as well as the role of extreme psychosocial factors. Further, we consider the role of potential protective factors such as folate and fatty acid intake. Evidence indicates an increased offspring vulnerability to ASD through advanced maternal and paternal age, valproate intake, toxic chemical exposure, maternal diabetes, enhanced steroidogenic activity, immune activation, and possibly altered zinc-copper cycles and treatment with selective serotonin reuptake inhibitors. Epidemiological studies demonstrate no evidence for vaccination posing an autism risk. It is concluded that future research needs to consider categorical autism, broader autism phenotypes, as well as autistic traits, and examine more homogenous autism variants by subgroup stratification. Our understanding of autism etiology could be advanced by research aimed at disentangling the causal and non-causal environmental effects, both founding and moderating, and gene-environment interplay using twin studies, longitudinal and experimental designs. The specificity of many environmental risks for ASD remains unknown and control of multiple confounders has been limited. Further understanding of the critical windows of neurodevelopmental vulnerability and investigating the fit of multiple hit and cumulative risk models are likely promising approaches in enhancing the understanding of role of environmental factors in the etiology of ASD.

Haptic Exploratory Procedures of Children and Youth with and without Cerebral Palsy.

Aims: Compare haptic exploratory procedures (EPs) and exploratory movements (EMs) of children. This study also tested the interrater reliability of a novel digital recording method. Methods: Participants were 31 children with typical development (TD) (aged 6 years 1 month to 15 years 9 months; 14 male) and 23 children with spastic unilateral cerebral palsy (CP) (aged 6 years to 15 years 5 months; 13 males; right hemiplegia, n = 12). Results: There were no statistically significant differences between groups for expected EP (p = .15), additional EPs (p = .78), or EMs (p = .69) but there was for mean duration of exploration (p < .001) and accuracy (p < .001). This suggests that although children with CP performed similar haptic EPs for each object as children with TD, they took more time and were less accurate in their identification. There was substantial agreement between the two raters' observations of expected EP, κ = .64, p < .0005. Conclusion: Children with CP performed similar haptic EPs as their TD peers. However, despite similarities, the results indicate that for children with CP manual ability was not the primary determinant of accuracy or speed of identification. This study provides evidence for a reliable method of recording haptic EPs.

What is the current practice of therapists in the measurement of somatosensation in children with cerebral palsy and other neurological disorders?

BACKGROUND/AIM: Somatosensation is the ability to detect and recognise body sensations such as touch, vibration, pressure, pain, temperature and proprioception. Cerebral palsy is a neurological disorder that is often accompanied by impairments in somatosensation. Current somatosensory assessments have limited psychometrics established for use with these children. The aim of this study was to identify therapists' current practice and perspectives related to the assessment of somatosensation in children with neurological disorders. METHODS: A cross-sectional questionnaire was used to identify the somatosensory assessments currently used in clinical practice, time allocated to assessment, and therapists' satisfaction and confidence using the available assessments of somatosensation. The questionnaire was adapted from a previously utilised questionnaire that identified therapists' use of somatosensory assessments with adults post-stroke. RESULTS: A total of 135 therapists responded to the questionnaire. Seventy-nine (92%) occupational therapists and 44 (89.7%) physiotherapists indicated that they currently assessed or treated children with somatosensory deficits. Sixty-four (82.1%) occupational therapists and 38 (86.3%) physiotherapists regarded assessment of somatosensation in children with neurological disorders as important to very important. However, only seven (8.8%) occupational therapists and seven (15.9%) physiotherapists reported confidence in their ability to do so. The methods with which therapists detect and measure somatosensory impairment in children with neurological disorders are variable, with non-standardised and/or informal assessments most frequently used. CONCLUSION: Despite there being recommendations of best practice for the assessment of specific domains of somatosensation in children with cerebral palsy, current practice does not yet mirror these recommendations. Additionally, therapists have low satisfaction and confidence with what they are currently using, highlighting the need for a comprehensive and standardised assessment of somatosensation for use in children with neurological disorders.

Construct validity and responsiveness of the functional Tactile Object Recognition Test for children with cerebral palsy.

BACKGROUND/AIM: The functional Tactile Object Recognition Test (fTORT) is a measure of haptic object recognition capacity recently adapted for use with children with neurological impairment. The current study aimed to investigate preliminary evidence of construct validity and responsiveness of the fTORT and its association with a measure of upper limb activity. METHODS: A cross-sectional study of 28 children with spastic hemiplegic cerebral palsy (CP) (mean age 10 years 8 months; SD two years four months; 16 male) and 39 typically developing (TD) children (mean age 11 years; SD two years nine months; 19 male) was utilised to investigate construct validity and association between measures. Sixteen children with CP (mean age 10 years 10 months; SD two years 8 months; 9 male) who were randomly allocated to either a treatment (n = 6) or control group (n = 10) were assessed at four time points to assess test responsiveness. RESULTS: There was a very significant difference (P value <0.0001) indicating greater haptic object recognition ability for the TD group (n = 39; median: 40; range: 33-42) than the group with CP (n = 28; median: 32.5; range: 3-41). fTORT scores demonstrated a significant association with scores on the activity measure (Pearson's r: 0.68; P = 0.0001). There were no significant changes over time in fTORT scores (P = 0.22) and no significant difference between the treatment and control groups (P = 0.47). CONCLUSION: The fTORT demonstrated preliminary construct validity, and was positively associated with an upper limb activity measure but scores did not change significantly following somatosensory training. This preliminary paper supports further research and future psychometric knowledge about the tool.

Clinical acceptability of the sense_assess© kids: Children and youth perspectives.

BACKGROUND: The sense_assess© kids is a standardised, norm-referenced assessment designed to measure the functional somatosensation capacity of the upper limb of children with cerebral palsy. The objective of the current study was to determine if the sense_assess© kids was clinically acceptable to children and youth. METHODS: A questionnaire was completed by participants following administration of the sense_assess© kids by a trained occupational therapist. Twenty-six children with spastic hemiplegic cerebral palsy (aged 6-15 years six months; mean 10 years eight months; 16 boys) were recruited. Participants responded to questions regarding the administration and level of difficulty of the sense_assess© kids using a Q-Sort of 'like' and 'dislike', Likert scales and short answers. Content analysis was applied. RESULTS: Twenty-one of twenty-six children, indicated that they were 'very happy' or 'happy' with the administration process of the sense_assess© kids. Most participants indicated that they liked the sensation they felt in the hand when tested. CONCLUSION: This study has demonstrated the acceptability of sense_assess© kids for the population for whom it is intended.

Median nerve mobilization techniques in the treatment of carpal tunnel syndrome: A systematic review.

STUDY DESIGN: Systematic review. INTRODUCTION: Median nerve mobilization is one of the interventions used in the treatment of carpal tunnel syndrome (CTS). However, it is uncertain how many types of mobilization techniques are described in the current literature or the relative effectiveness of these techniques in treating CTS. PURPOSE OF THE STUDY: The aim of this review was to describe the types and effectiveness of median nerve mobilization techniques studied in the CTS literature. METHODS: Electronic searches of 5 databases and manual searches of references lists located randomized controlled trials studies published between 2000 and April 2015. Quality appraisal for each study was conducted using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields by 2 independent reviewers. RESULTS: Nine randomized controlled trial studies describing various median nerve mobilization techniques used in the treatment of CTS were included. All studies were rated as of "adequate", "good", or "strong" quality for the Standard Quality Assessment Criteria. Three techniques of median nerve mobilization were described. Treatment outcomes included measures of electrodiagnostic testing, functional performance, pain, physical examination, sensation, and strength. Standardized mean differences for the treatment outcomes ranged from very small to large (0.05-1.71). CONCLUSION: The findings are inconclusive regarding the effectiveness of each mobilization technique due to methodological limitations in the current body of research. Therefore, there is a clear need for high-quality controlled studies to examine various approaches to median nerve mobilization techniques in the treatment of CTS. LEVEL OF EVIDENCE: 2a.

'We didn't have to dance around it': opt-out HIV testing among homeless and marginalised patients.

This study explored opt-out HIV testing in an Australian general practice. The aims were to: (1) determine the effect of the opt-out approach on the number of HIV tests performed; and (2) explore the acceptability of opt-out HIV testing from the healthcare providers' perspective. A prospective mixed-methods study of opt-out HIV testing over a 2-year period (March 2014-March 2016) was conducted. Implementation was based on a theoretical framework that was developed specifically for this study. The setting was Homeless Healthcare, a health service in Perth, Western Australia. The number of HIV tests conducted during the control year (usual practice) was compared with the intervention year (opt-out testing). After the intervention, the healthcare providers (n=8) were interviewed about their experiences with opt-out HIV testing. Directed content analysis was used to explore the qualitative data. HIV testing rates were low during both the control year and the intervention year (315 HIV tests (12% of the patient cohort) and 344 HIV tests (10%) respectively). Opt-out HIV testing was feasible and acceptable to the participating healthcare providers. Other health services could consider opt-out HIV testing for their patients to identify people with undiagnosed infections and sustain Australia's low HIV prevalence.

The Positive Outlook Study: A Randomised Controlled Trial Evaluating Online Self-Management for HIV Positive Gay Men.

The aim of this paper was to evaluate the effectiveness of an online self-management program in improving health outcomes and well-being for gay men living with HIV in Australia. The online Positive Outlook Program was based on self-efficacy theory and used a self-management approach to enhance HIV-positive gay men's skills, confidence and abilities to manage the psychosocial issues associated with HIV in daily life. The 7-week program was delivered in closed groups and comprised information modules, action-planning activities, moderated discussion boards, and weekly peer-facilitated 'live chats'. A randomised controlled trial was conducted to establish the effectiveness of the Positive Outlook program compared to a 'usual care' control. Participants were HIV-positive gay men 18 years or older living in Australia. Primary outcomes were evaluated at three time-points (baseline, post-intervention and 12-week's post-intervention follow-up) and included HIV-related quality of life (PROQOL-HIV), outcomes of health education (HeiQ) and HIV specific self-efficacy (Positive Outlook Self-Efficacy Scale). A total of 132 gay men with HIV in Australia were randomly allocated to the intervention (n = 68) or usual care control (n = 64) groups. Maximum likelihood marginal-linear modelling indicated significant improvement in the intervention group on the PROQOL-HIV subscales of body change (p = 0.036), social relationships (p = 0.035) and emotional distress (p = 0.031); the HeiQ subscales of health-directed activity (p = 0.048); constructive attitudes and approaches (p = 0.015); skill and technique acquisition (p = 0.046) and health service navigation (p = 0.008); and the Positive Outlook Self-Efficacy Scale on the subscales of relationships (p = 0.019); social participation (p = 0.006); and emotions (p = 0.041). Online delivery of self-management programs is feasible and has the potential to improve quality of life, self-management skills and domain specific self-efficacy for gay men with HIV.

Aspects of speech-language abilities are influenced by MECP2 mutation type in girls with Rett syndrome.

This study investigates relationships between methyl-CpG-binding protein 2 gene (MECP2) mutation type and speech-language abilities in girls with Rett syndrome. Cross-sectional data on 766 girls, aged 15 years and under, with genetically confirmed Rett syndrome was obtained from the Australian Rett Syndrome Database (ARSD) (n = 244) and the International Rett Syndrome Phenotype Database (InterRett) (n = 522). Relationships between MECP2 mutation type and age of regression in speech-language abilities, and the level of speech-language abilities before and after this regression were investigated. The females had a median age of 4.95 years in the ARSD and 5.25 years in InterRett. The majority (89%, 685/766) acquired speech-language abilities in the form of babble or words at some point in time. Of those who acquired babble or words, 85% (581/685) experienced a regression in these abilities. Those with a p.Arg133Cys mutation were the most likely to use one or more words, prior to (RRR = 3.45; 95% CI 1.15-10.41) and after (RRR = 5.99; 95% CI 2.00-17.92), speech-language regression. Girls with Rett syndrome vary in their use of speech and language, and in their experience of speech-language regression and these variations are partly explained by genotype.