Longitudinal assessment of the health-related quality of life of children and adolescents with chronic kidney disease.

In this multi-center longitudinal cohort study conducted in Australia and New Zealand, we assessed the trajectories of health-related quality of life (HRQoL) in children with chronic kidney disease (CKD) over time. A total of 377 children (aged 6-18 years) with CKD stages 1-5 (pre-dialysis), dialysis, or transplant, were followed biennially for four years. Multi Attribute Utility (MAU) scores of HRQoL were measured at baseline and at two and four years using the McMaster Health Utilities Index Mark 3 tool, a generic multi-attribute, preference-based system. A multivariable linear mixed model was used to assess the trajectories of HRQoL over time in 199 children with CKD stage 1-5, 43 children receiving dialysis and 135 kidney transplant recipients. An interaction between CKD stage at baseline and follow-up time indicated that the slopes of the HRQoL scores differed between children by CKD stage at inception. Over half of the cohort on dialysis at baseline had received a kidney transplant by the end of year four and the MAU scores of these children increased by a meaningful amount averaging 0.05 (95% confidence interval 0.01 to 0.09) per year in comparison to those who were transplant recipients at baseline. The mean difference between baseline and year two MAU scores was 0.09 (95% confidence interval -0.05, 0.23), (Cohen's d effect size 0.31). Thus, improvement in HRQoL over time of children on dialysis at baseline was likely to have been driven by their transition from dialysis to transplantation. Additionally, children with CKD stage 1-5 and transplant recipients at baseline had no changes in their disease stage or treatment modality and experienced stable HRQoL over time.

Special health care needs during childhood and academic achievement in secondary school.

BACKGROUND: Secondary education has lifelong implications for wellbeing. We evaluated associations between the duration and timing of special health care needs (SHCN) across childhood and academic achievement in secondary school. METHODS: Cohort design. The structured modelling approach was used to evaluate life-course models for associations between the duration and timing of SHCN (measured using a two-item SHCN screener across ages 4-5, 6-7, 8-9 and 10-11 years) and Grade 7 (median age 12.5 years) reading and numeracy achievement. Linear regressions were fitted for each life-course model: four critical period models (each including SHCN exposure in one period), one sensitive period model (including SHCN exposure in all periods) and two strict accumulation models (including the duration of SHCN exposure in linear form then categorical form). Interactions of SHCN with child sex and family socio-economic status (SES) were examined. RESULTS: Of 3734 children, 1845 were female. The number of children with SHCN was 434 (11.7%), 458 (12.9%), 534 (14.7%), 551 (15.4%) at 4-5, 6-7, 8-9 and 10-11 years respectively. For both outcomes, the linear strict accumulation model fitted best, and interactions of SHCN with sex and SES were non-significant. The average decrease in school achievement z score (95% confidence interval) per period of having SHCN was 0.04 (-0.07 to -0.02) for reading and 0.08 (-0.11 to -0.05) for numeracy. CONCLUSIONS: A longer duration of SHCN from age 4-11 years has small-sized cumulative associations with poorer Grade 7 reading and numeracy achievement. Each period of SHCN between 4 and 5 and 10-11 years was associated with nearly 0.05 and 0.1 of a standard deviation reduction in Grade 7 reading and numeracy scores respectively, and these associations did not appear to differ across sex or SES. These findings suggest that children with persistent SHCN are at risk of academic deficits and should receive focused interventions.

A national harmonised data collection network for neurodevelopmental disorders: A transdiagnostic assessment protocol for neurodevelopment, mental health, functioning and well-being.

Background: Children with neurodevelopmental disorders share common phenotypes, support needs and comorbidities. Such overlap suggests the value of transdiagnostic assessment pathways that contribute to knowledge about research and clinical needs of these children and their families. Despite this, large transdiagnostic data collection networks for neurodevelopmental disorders are not well developed. This paper describes the development of a nationally supported transdiagnostic clinical and research assessment protocol across Australia. The vision is to establish a harmonised network for data collection and collaboration that promotes transdiagnostic clinical practice and research. Methods: Clinicians, researchers and community groups across Australia were consulted using surveys and national summits to identify assessment instruments and unmet needs. A national research committee was formed and, using a consensus approach, selected assessment instruments according to pre-determined criteria to form a harmonised transdiagnostic assessment protocol. Results: Identified assessment instruments were clustered into domains of transdiagnostic assessment needs, which included child functioning/quality of life, child mental health, caregiver mental health, and family background information. From this, the research committee identified a core set of nine measures and an extended set of 14 measures that capture these domains with potential for further modifications as recommended by clinicians, researchers and community members. Conclusion: The protocol proposed here was established through a strong partnership between clinicians, researchers and the community. It will enable (i) consensus driven transdiagnostic clinical assessments for children with neurodevelopmental disorders, and (ii) research studies that will inform large transdiagnostic datasets across neurodevelopmental disorders and that can be used to inform research and policy beyond narrow diagnostic groups. The long-term vision is to use this framework to facilitate collaboration across clinics to enable large-scale data collection and research. Ultimately, the transdiagnostic assessment data can be used to inform practice and improve the lives of children with neurodevelopmental disorders and their families.

Patterns and preferences for accessing health and aged care services in older Aboriginal and Torres Strait Islander Australians.

OBJECTIVES: To determine preferences for health and aged care services in Aboriginal and Torres Strait Islander Australians and explore related factors. METHODS: Mixed-method, cross-sectional study including 336 Aboriginal and Torres Strait Islander people aged 60 years and older from regional and urban areas. RESULTS: Exclusive preference for Aboriginal Community Controlled services was most common. This preference significantly increased when preferences for, and use of, aged care and disability services were considered. The likelihood of holding an exclusive preference for Aboriginal Community Controlled services was higher in regional settings compared to urban and in those reporting lower engagement in traditional activities during childhood. CONCLUSIONS: These findings suggest that the majority of older Australian Aboriginal and Torres Strait Islander people prefer aged and disability care provided by Aboriginal services. Given the anticipated increase in service demand in this population, there is a growing need for culturally safe services, particularly in regional settings.

Identifying cognitive and demographic variables that contribute to carer burden in dementia.

BACKGROUND/AIMS: Carer burden has been associated with other carer-reported factors (e.g. depression), but less is known about the influence of more independent variables. We aimed to determine the impact of cognitive deficits, demographic variables and dementia subtype on carer burden. METHODS: Patients with Alzheimer's dementia (n = 35) or frontotemporal lobar degeneration (n = 61) underwent assessment of anterograde memory, word generation, impulse control and emotion recognition. Age, sex, relationship type, disease duration and diagnosis were also considered. Carers completed the Zarit Burden Interview. RESULTS: In bivariate regression analyses, carer burden was related to age, diagnosis, memory, impulse control and emotion recognition. Stepwise multivariate regression revealed independent contributions by patient age, memory and emotion recognition, explaining 23% of the variance. CONCLUSION: The findings could help refine interventions and carer support.