Economic impact of informal caring for a person with arthritis in Australia from 2015 to 2030: a microsimulation approach using national survey data.

OBJECTIVES: To estimate the economic burden of informal caregivers not in the labour force (NILF) due to caring for a person with arthritis in Australia, with projections of these costs from 2015 to 2030. DESIGN: Static microsimulation modelling using national survey data. SETTING: Australia nationwide survey. PARTICIPANTS: Participants include respondents to the Survey of Disability, Ageing and Carers who are informal carers of a person who has arthritis as their main chronic condition and non-carers. OUTCOME MEASURES: Estimating the economic impact and national aggregated costs of informal carers NILF to care for a person with arthritis and projecting these costs from 2015 to 2030 in 5-year intervals. RESULTS: On a per-person basis, when adjusted for age, sex and highest education attained, the difference in average weekly total income between informal carers and non-carers employed in the labour force is $A1051 (95% CI: $A927 to $A1204) in 2015 and projected to increase by up to 22% by 2030. When aggregated, the total national annual loss of income to informal carers NILF is estimated at $A388.2 million (95% CI: $A324.3 to $A461.9 million) in 2015, increasing to $A576.9 million (95% CI: $A489.2 to $A681.8 million) by 2030. The national annual tax revenue lost to the government of the informal carers NILF is estimated at $A99 million (95% CI: $A77.9 to $A126.4 million) in 2015 and is projected to increase 49% by 2030. CONCLUSION: Informal carers NILF are economically worse off than employed non-carers, and the aggregated national annual costs are substantial. The future economic impact of informal carers NILF to care for a person with arthritis in Australia is projected to increase, with the estimated differences in income between informal carers and employed non-carers increasing by 22% from 2015 to 2030.

AAPM WGPE report 394: Simulated error training for the physics plan and chart review.

BACKGROUND: Simulated error training is a method to practice error detection in situations where the occurrence of error is low. Such is the case for the physics plan and chart review where a physicist may check several plans before encountering a significant problem. By simulating potentially hazardous errors, physicists can become familiar with how they manifest and learn from mistakes made during a simulated plan review. PURPOSE: The purpose of this project was to develop a series of training datasets that allows medical physicists and trainees to practice plan and chart reviews in a way that is familiar and accessible, and to provide exposure to the various failure modes (FMs) encountered in clinical scenarios. METHODS: A series of training datasets have been developed that include a variety of embedded errors based on the risk-assessment performed by American Association of Physicists in Medicine (AAPM) Task Group 275 for the physics plan and chart review. The training datasets comprise documentation, screen shots, and digital content derived from common treatment planning and radiation oncology information systems and are available via the Cloud-based platform ProKnow. RESULTS: Overall, 20 datasets have been created incorporating various software systems (Mosaiq, ARIA, Eclipse, RayStation, Pinnacle) and delivery techniques. A total of 110 errors representing 50 different FMs were embedded with the 20 datasets. The project was piloted at the 2021 AAPM Annual Meeting in a workshop where participants had the opportunity to review cases and answer survey questions related to errors they detected and their perception of the project's efficacy. In general, attendees detected higher-priority FMs at a higher rate, though no correlation was found between detection rate and the detectability of the FMs. Familiarity with a given system appeared to play a role in detecting errors, specifically when related to missing information at different locations within a given software system. Overall, 96% of respondents either agreed or strongly agreed that the ProKnow portal and training datasets were effective as a training tool, and 75% of respondents agreed or strongly agreed that they planned to use the tool at their local institution. CONCLUSIONS: The datasets and digital platform provide a standardized and accessible tool for training, performance assessment, and continuing education regarding the physics plan and chart review. Work is ongoing to expand the project to include more modalities, radiation oncology treatment planning and information systems, and FMs based on emerging techniques such as auto-contouring and auto-planning.

The Healthcare and Societal Costs of Familial Intellectual Disability.

Most of the studies on the cost of intellectual disability are limited to a healthcare perspective or cohorts composed of individuals where the etiology of the condition is a mixture of genetic and non-genetic factors. When used in policy development, these can impact the decisions made on the optimal allocation of resources. In our study, we have developed a static microsimulation model to estimate the healthcare, societal, and lifetime cost of individuals with familial intellectual disability, an inheritable form of the condition, to families and government. The results from our modeling show that the societal costs outweighed the health costs (approximately 89.2% and 10.8%, respectively). The lifetime cost of familial intellectual disability is approximately AUD 7 million per person and AUD 10.8 million per household. The lifetime costs to families are second to those of the Australian Commonwealth government (AUD 4.2 million and AUD 9.3 million per household, respectively). These findings suggest that familial intellectual disability is a very expensive condition, representing a significant cost to families and government. Understanding the drivers of familial intellectual disability, especially societal, can assist us in the development of policies aimed at improving health outcomes and greater access to social care for affected individuals and their families.

Productivity outcomes from chronic pain management interventions in the working age population; a systematic review.

ABSTRACT: Productivity loss because of chronic pain in the working age population is a widespread concern internationally. Interventions for chronic pain in working age adults might be expected to achieve enhanced productivity in terms of reduced costs of workers' compensation insurance, reduced disability support, and improved rates of return to work for injured workers. This would require the use of measures of productivity in the evaluation of chronic pain management interventions. The aim of this review was to identify and interpret the productivity outcomes of randomised controlled trials reported by studies that conducted economic evaluations (eg, cost-effectiveness and cost-utility) of chronic pain management interventions in the working age population published from database inception to March 2023. Econlit, Embase, and Pubmed electronic databases were searched, yielding 12 studies that met the selection criteria. All 12 studies used absenteeism to measure productivity, translating return to work measures into indirect costs. Only one study included return to work as a primary outcome. Ten studies found no statistically significant improvements in productivity-related costs. Despite evidence for reduced pain-related disability after pain management interventions, this review suggests that the use of measures for assessing productivity gains is lacking. Including such measures would greatly assist administrators and payers when considering the broader societal benefits of such interventions.

Narrowing the diagnostic gap: Genomes, episignatures, long-read sequencing, and health economic analyses in an exome-negative intellectual disability cohort.

PURPOSE: Genome sequencing (GS)-specific diagnostic rates in prospective tightly ascertained exome sequencing (ES)-negative intellectual disability (ID) cohorts have not been reported extensively. METHODS: ES, GS, epigenetic signatures, and long-read sequencing diagnoses were assessed in 74 trios with at least moderate ID. RESULTS: The ES diagnostic yield was 42 of 74 (57%). GS diagnoses were made in 9 of 32 (28%) ES-unresolved families. Repeated ES with a contemporary pipeline on the GS-diagnosed families identified 8 of 9 single-nucleotide variations/copy-number variations undetected in older ES, confirming a GS-unique diagnostic rate of 1 in 32 (3%). Episignatures contributed diagnostic information in 9% with GS corroboration in 1 of 32 (3%) and diagnostic clues in 2 of 32 (6%). A genetic etiology for ID was detected in 51 of 74 (69%) families. Twelve candidate disease genes were identified. Contemporary ES followed by GS cost US$4976 (95% CI: $3704; $6969) per diagnosis and first-line GS at a cost of $7062 (95% CI: $6210; $8475) per diagnosis. CONCLUSION: Performing GS only in ID trios would be cost equivalent to ES if GS were available at $2435, about a 60% reduction from current prices. This study demonstrates that first-line GS achieves higher diagnostic rate than contemporary ES but at a higher cost.

EQ-5D-5L health utility scores in Australian adults with inherited retinal diseases: A cross-sectional survey.

PURPOSE: Economic evaluations of interventions for ocular disease require utility scores that accurately represent quality of life in the target population. This study aimed to describe the distribution of EQ-5D-5L utility values among Australian adults with symptomatic inherited retinal diseases (IRDs) and to assess the relationship between these scores and vision-related quality of life. METHODS: A survey was administered predominantly online in 2021. Participants completed the EQ-5D-5L general health utility instrument, the EQ vertical visual analogue scale (EQ-VAS) and the National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25). Self-reported IRD diagnoses were classified as being associated with central or widespread retinal involvement. RESULTS: Responses from 647 participants aged 18-93 years were included, 50.1% were men and 77.6% had an IRD associated with widespread retinal involvement. The majority reported no problems with self-care and no pain/discomfort but did report anxiety/depression and problems with work, study, housework, or family/leisure activities. Most people with widespread involvement reported problems with mobility. Median EQ-5D-5L utility was 0.88 and 0.91 among people with widespread and central involvement, respectively (age and sex-adjusted p = 0.029); and median EQ-VAS was 75 and 80, respectively (adjusted p = 0.003). A moderate curvilinear correlation was observed between EQ-5D-5L and NEI-VFQ-25 composite score (Spearman's ρ 0.69), but not all people with poor vision-related quality of life had low EQ-5D-5L utility values. CONCLUSIONS: EQ-5D-5L health utility values are correlated with vision-related quality of life among adults with IRDs. However, the EQ-5D-5L may not be sensitive to the full impact of vision impairment on quality of life.

A randomized controlled trial of graded exposure treatment (GET living) for adolescents with chronic pain.

ABSTRACT: Graded exposure treatment (GET) is a theory-driven pain treatment that aims to improve functioning by exposing patients to activities previously feared and avoided. Combining key elements of GET with acceptance-based exposure, GET Living (GL) was developed for adolescents with chronic pain (GL). Based on robust treatment effects observed in our single-case experimental design pilot trial of GL (NCT01974791), we conducted a 2-arm randomized clinical trial comparing GL with multidisciplinary pain management (MPM) comprised of cognitive behavioral therapy and physical therapy for pain management (NCT03699007). A cohort of 68 youth with chronic musculoskeletal pain (M age 14.2 years; 81% female) were randomized to GL or MPM. Owing to COVID-19 restrictions, 54% of participants received zoom video delivered care. Assessments were collected at baseline, discharge, as well as at 3-month and 6-month follow-up. Primary outcomes were self-reported pain-related fear and avoidance. Secondary outcomes were child functional disability and parent protective responses to child pain. As hypothesized, GL improved in primary and secondary outcomes at 3-month follow-up. Contrary to our superiority hypothesis, there was no significant difference between GL and MPM. Patients reported both GL and MPM (in person and video) as credible and were highly satisfied with the treatment experience. Next steps will involve examining the single-case experimental design data embedded in this trial to facilitate an understanding of individual differences in treatment responses (eg, when effects occurred, what processes changed during treatment within the treatment arm). The current findings support GET Living and MPM for youth with chronic pain.

The health care and societal costs of inherited retinal diseases in Australia: a microsimulation modelling study.

OBJECTIVES: To estimate the health care and societal costs of inherited retinal diseases (IRDs) in Australia. DESIGN, SETTING, PARTICIPANTS: Microsimulation modelling study based on primary data - collected in interviews of people with IRDs who had ophthalmic or genetic consultations at the Children's Hospital at Westmead or the Save Sight Institute (both Sydney) during 1 January 2019 - 31 December 2020, and of their carers and spouses - and linked Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Schedule (PBS) data. MAIN OUTCOME MEASURES: Annual and lifetime costs for people with IRDs and for their carers and spouses, grouped by payer (Australian government, state governments, individuals, private health insurance) and type (health care costs; societal costs: social support, National Disability Insurance Scheme (NDIS), income and taxation, costs associated with caring for family members with IRDs); estimated annual national cost of IRDs. RESULTS: Ninety-four people (74 adults, 20 people under 18 years; 55 girls and women [59%]) and 30 carers completed study surveys (participation rate: adults, 66%; children, 66%; carers, 63%). Total estimated lifetime cost was $5.2 million per person with an IRD, of which 87% were societal and 13% health care costs. The three highest cost items were lost income for people with IRDs ($1.4 million), lost income for their carers and spouses ($1.1 million), and social spending by the Australian government (excluding NDIS expenses: $1.0 million). Annual costs were twice as high for people who were legally blind as for those with less impaired vision ($83 910 v $41 357 per person). The estimated total annual cost of IRDs in Australia was $781 million to $1.56 billion. CONCLUSION: As the societal costs associated with IRDs are much larger than the health care costs, both contributors should be considered when assessing the cost-effectiveness of interventions for people with IRDs. The increasing loss of income across life reflects the impact of IRDs on employment and career opportunities.

Economic analysis of patient-related effects of an interdisciplinary pain self-management program.

ABSTRACT: Active Day Patient Treatment (ADAPT) is a well-established 3 week intensive cognitive-behavioural, interdisciplinary pain management program for patients with disabling chronic pain. The aim of this analysis was to conduct an economic analysis of patient-related effects of ADAPT using hospital administrative data, specifically, to compare the costs and health outcomes for patients 1 month after participating in the program, with the preprogram period when they were receiving standard care. This retrospective cohort study included 230 patients who completed ADAPT (including follow-ups) between 2014 and 17 at the Pain Management and Research Centre at the Royal North Shore Hospital in Sydney, Australia. Data on pain-related healthcare utilization and costs before and after the program were assessed. Primary outcome measures were labour force participation for patients' average weekly earnings and cost per clinically meaningful change in Pain Self-efficacy Questionnaire, Brief Pain Inventory (BPI) Severity, and BPI interference scores (n = 224). We estimated patients, on average, earned $59 more each week at 1 month follow-up compared with baseline. The cost per clinically meaningful change in pain severity and interference score based on the BPI severity and BPI interference were AU$9452.32 (95% CI: $7031.76-$12,930.40) and AU$3446.62 (95% CI: $2851.67-$4126.46), respectively. The cost per point improvement and per clinically meaningful change in the Pain Self-efficacy Questionnaire were $483 (95% CI: $411.289-$568.606) and $3381.02, respectively. Our analysis showed a better health outcome, reduced healthcare services' cost, and reduced number of medications taken 1 month after participating in ADAPT.

Healthcare resource utilization of patients with mitochondrial disease in an outpatient hospital setting.

BACKGROUND AND OBJECTIVES: Mitochondrial diseases present as multi-system disorders requiring a comprehensive multidisciplinary approach. The data on healthcare resource utilization associated with mitochondrial diseases and the clinical drivers of these costs are limited including for the out-patient setting where the majority of the clinical care for mitochondrial disease patients occurs. We performed a cross-sectional retrospective study of out-patient healthcare resource utilization and costs for patients with a confirmed diagnosis of mitochondrial disease. METHODS: We recruited participants from the Mitochondrial Disease Clinic in Sydney and stratified them into three groups: those with mitochondrial DNA (mtDNA) mutations (Group 1), those with nuclear DNA (nDNA) mutations and the predominant phenotype of chronic progressive external ophthalmoplegia (CPEO) or optic atrophy (Group 2) and those without a confirmed genetic diagnosis but clinical criteria and muscle biopsy findings supportive of a diagnosis of mitochondrial disease (Group 3). Data was collected through retrospective chart review and out-patient costs were calculated using the Medicare Benefits Schedule. RESULTS: We analyzed the data from 91 participants and found that Group 1 had the greatest average out-patient costs per person per annum ($838.02; SD 809.72). Neurological investigations were the largest driver of outpatient healthcare costs in all groups (average costs per person per annum:-Group 1: $364.11; SD 340.93, Group 2: $247.83; SD 113.86 and Group 3: $239.57; SD 145.69) consistent with the high frequency (94.5%) of neurological symptoms. Gastroenterological and cardiac-related out-patient costs were also major contributors to out-patient healthcare resource utilization in Groups 1 and 3. In Group 2, ophthalmology was the second-most resource intensive specialty ($136.85; SD 173.35). The Group 3 had the greatest average healthcare resource utilization per person over the entire duration of out-patient clinic care ($5815.86; SD 3520.40) most likely due to the lack of a molecular diagnosis and a less customized management approach. CONCLUSION: The drivers of healthcare resource utilization are dependent on the phenotype-genotype characteristics. Neurological, cardiac, and gastroenterological costs were the top three drivers in the out-patient clinics unless the patient had nDNA mutations with predominant phenotype of CPEO and/or optic atrophy wherein ophthalmological-related costs were the second most resource intensive driver.

AAPM task group report 275.S: Survey strategy and results on plan review and chart check practices in US and Canada.

BACKGROUND: AAPM Task Group (TG) 275 was charged with developing practical, evidence-based recommendations for physics plan and chart review clinical processes for radiation therapy. As part of this charge, and to characterize practices and clinical processes, a survey of the medical physics community was developed and conducted. Detailed analyses and trends based on the survey that exceeded TG report length constraints are presented herein. AIMS: The design, development, and detailed results of the TG- 275 survey as well as statistical analysis and trends are described in detail. This is complementary material to the TG 275 report. METHODS AND MATERIALS: The survey consisted of 100 multiple-choice questions divided into four main sections: 1) Demographics, 2) Initial Plan Check, 3) On-Treatment, and 4) End-of-Treatment Chart Check. The survey was released to all AAPM members who self-reported working in the radiation oncology field, and it was kept open for 7 weeks. Results were summarized using descriptive statistics. To study practice differences, tests of association were performed using data grouped by four demographic questions: 1) Institution Type, 2) Average number of patients treated daily, 3) Radiation Oncology Electronic Medical Record, and 4) Perceived Culture of Safety. RESULTS: The survey captured 1370 non-duplicate entries from the United States and Canada. Differences across practices were grouped and presented based on Process-Based and Check-Specific questions. A risk-based summary was created to show differences amongst the four demographic questions for checks associated with the highest risk failure modes identified by TG-275. CONCLUSION: The TG-275 survey captured a baseline of practices on initial plan, on-treatment, and end-of-treatment checks across a wide variety of clinics and institutions. The results of test of association showed practice heterogeneities as a function of demographic characteristics. Survey data were successfully used to inform TG-275 recommendations.

Economic evaluation of population-based, expanded reproductive carrier screening for genetic diseases in Australia.

PURPOSE: This study aimed to evaluate the cost effectiveness of population-based, expanded reproductive carrier screening (RCS) for a 300 recessive gene panel from health service and societal perspectives. METHODS: A microsimulation model (PreConMod) was developed using 2016 Australian Census data as the base population. Epidemiologic, health, and indirect cost data were based on literature review. The study assessed the incremental cost effectiveness ratio of expanded RCS compared with (1) no population screening and (2) 3-condition screening for cystic fibrosis, spinal muscular atrophy, and fragile X syndrome in a single birth cohort. Averted affected births and health service savings with expanded RCS were projected to year 2061. Both one-way and probability sensitivity analyses were conducted to assess the uncertainty of the parameter inputs. RESULTS: Expanded RCS was cost saving compared with no population screening and cost effective compared with the 3-condition screening (incremental cost effectiveness ratio of Australian dollar [AUD] 6287 per quality-adjusted life year gained) at an uptake rate of 50% for RCS, 59% for in vitro fertilization and preimplantation genetic testing, 90% for prenatal diagnosis testing, and 50% for elective termination of affected pregnancies and a cost of AUD595 per couple screened. Our model predicts that expanded RCS would avert one-third of affected births in a single birth cohort and reduce lifetime health service spending by AUD632.0 million. Expanded RCS was estimated to be cost saving from the societal perspective. CONCLUSION: Expanded RCS is cost effective from health service and societal perspectives. Expanded RCS is projected to avert significantly more affected births and result in health service saving beyond those expected from 3-condition screening or no population screening.

Effectiveness of a New Service Delivery Model for Management of Knee Osteoarthritis in Primary Care: A Cluster Randomized Controlled Trial.

OBJECTIVE: To evaluate the effectiveness and health costs of a new primary care service delivery model (the Optimising Primary Care Management of Knee Osteoarthritis [PARTNER] model) to improve health outcomes for patients with knee osteoarthritis (OA) compared to usual care. METHODS: This study was a 2-arm, cluster, superiority, randomized controlled trial with randomization at the general practice level, undertaken in Victoria and New South Wales, Australia. We aimed to recruit 44 practices and 572 patients age ≥45 years with knee pain for >3 months. Professional development opportunities on best practice OA care were provided to intervention group general practitioners (GPs). All recruited patients had an initial GP visit to confirm knee OA diagnosis. Control patients continued usual GP care, and intervention patients were referred to a centralized care support team (CST) for 12-months. Via telehealth, the CST provided OA education and an agreed OA action plan focused on muscle strengthening, physical activity, and weight management. Primary outcomes were patient self-reported change in knee pain (Numerical Rating Scale [range 0-10; higher score = worse]) and physical function (Knee Injury and Osteoarthritis Outcome Score activities of daily living subscale [range 0-100; higher score = better] at 12 months. Health care cost outcomes included costs of medical visits and prescription medications over the 12-month period. RESULTS: Recruitment targets were not reached. A total of 38 practices and 217 patients were recruited. The intervention improved pain by 0.8 of 10 points (95% confidence interval [95% CI] 0.2, 1.4) and function by 6.5 of 100 points (95% CI 2.3, 10.7), more than usual care at 12 months. Total costs of medical visits and prescriptions were $3,940 (Australian) for the intervention group versus $4,161 for usual care. This difference was not statistically significant. CONCLUSION: The PARTNER model improved knee pain and function more than usual GP care. The magnitude of improvement is unlikely to be clinically meaningful for pain but is uncertain for function.

Patient-Reported Health-Related Quality of Life in Individuals with Inherited Retinal Diseases.

Purpose: To evaluate the impact of inherited retinal diseases (IRDs) on quality of life (QoL) using multiattributable health utilities derived from primary patient data. Design: Cross-sectional observational study. Participants: Seventy adult patients (mean age, 42.7 years) with IRD recruited from state-wide services in Australia. Methods: Health utility values were calculated from the Assessment of Quality of Life 8-Dimension (AQoL-8D). Linear regressions were used to analyze the relationship between the 25-item and 39-item National Eye Institute Visual Function Questionnaires (NEI-VFQ-25 and NEI-VFQ-39, respectively) and health utilities from the AQoL-8D. Main Outcome Measures: The AQoL-8D utility values were compared between the IRD cohort and population norms. Regressions were used to determine explanatory power of the NEI-VFQ-25 and NEI-VFQ-39 for health utilities from the AQoL-8D. Results: Average health-related utility for patients with IRD was 0.58, significantly lower than population norms of 0.80. The IRD patient scores were significantly lower than population norms for all 8 domains of the AQoL-8D. Regressions showed a statistically significant relationship between the NEI-VFQ-39 and AQoL-8D, with the NEI-VFQ-39 and other clinical data explaining up to 73% of the variation in AQoL-8D values and 69% of the variation in the NEI-VFQ-25 values. Conclusions: Patients with IRD have significantly lower utility values across all dimensions of QoL, with the largest differences in independent living, senses, and relationships. The NEI-VFQ-25 and NEI-VFQ-39 are highly correlated with overall AQoL-8D utilities and, combined with other data, can reasonably estimate QoL utilities required for cost-effectiveness studies.

Whole exome and genome sequencing in mendelian disorders: a diagnostic and health economic analysis.

Whole genome sequencing (WGS) improves Mendelian disorder diagnosis over whole exome sequencing (WES); however, additional diagnostic yields and costs remain undefined. We investigated differences between diagnostic and cost outcomes of WGS and WES in a cohort with suspected Mendelian disorders. WGS was performed in 38 WES-negative families derived from a 64 family Mendelian cohort that previously underwent WES. For new WGS diagnoses, contemporary WES reanalysis determined whether variants were diagnosable by original WES or unique to WGS. Diagnostic rates were estimated for WES and WGS to simulate outcomes if both had been applied to the 64 families. Diagnostic costs were calculated for various genomic testing scenarios. WGS diagnosed 34% (13/38) of WES-negative families. However, contemporary WES reanalysis on average 2 years later would have diagnosed 18% (7/38 families) resulting in a WGS-specific diagnostic yield of 19% (6/31 remaining families). In WES-negative families, the incremental cost per additional diagnosis using WGS following WES reanalysis was AU$36,710 (£19,407;US$23,727) and WGS alone was AU$41,916 (£22,159;US$27,093) compared to WES-reanalysis. When we simulated the use of WGS alone as an initial genomic test, the incremental cost for each additional diagnosis was AU$29,708 (£15,705;US$19,201) whereas contemporary WES followed by WGS was AU$36,710 (£19,407;US$23,727) compared to contemporary WES. Our findings confirm that WGS is the optimal genomic test choice for maximal diagnosis in Mendelian disorders. However, accepting a small reduction in diagnostic yield, WES with subsequent reanalysis confers the lowest costs. Whether WES or WGS is utilised will depend on clinical scenario and local resourcing and availability.

Individual and national financial impacts of informal caring for people with mental illness in Australia, projected to 2030.

BACKGROUND: Mental illness has a significant impact not only on patients, but also on their carers' capacity to work. AIMS: To estimate the costs associated with lost labour force participation due to the provision of informal care for people with mental illness in Australia, such as income loss for carers and lost tax revenue and increased welfare payments for government, from 2015 to 2030. METHOD: The output data of a microsimulation model Care&WorkMOD were analysed to project the financial costs of informal care for people with mental illness, from 2015 to 2030. Care&WorkMOD is a population-representative microsimulation model of the Australian population aged between 15 and 64 years, built using the Australian Bureau of Statistics Surveys of Disability, Ageing and Carers data and the data from other population-representative microsimulation models. RESULTS: The total annual national loss of income for all carers due to caring for someone with mental illness was projected to rise from AU$451 million (£219.6 million) in 2015 to AU$645 million (£314 million) in 2030 in real terms. For the government, the total annual lost tax revenue was projected to rise from AU$121 million (£58.9 million) in 2015 to AU$170 million (£82.8 million) in 2030 and welfare payments to increase from AU$170 million (£82.8 million) to AU$220 million (£107 million) in 2030. CONCLUSIONS: The costs associated with lost labour force participation due to the provision of informal care for people with mental illness are projected to increase for both carers and government, with a widening income gap between informal carers and employed non-carers, putting carers at risk of increased inequality.

Health, social and economic implications of adolescent risk behaviours/states: protocol for Raine Study Gen2 cohort data linkage study.

Background: Risk-taking behaviours are a major contributor to youth morbidity and mortality. Vulnerability to these negative outcomes is constructed from individual behaviour including risk-taking, and from social context, ecological determinants, early life experience, developmental capacity and mental health, contributing to a state of higher risk. However, although risk-taking is part of normal adolescent development, there is no systematic way to distinguish young people with a high probability of serious adverse outcomes, hindering the capacity to screen and intervene. This study aims to explore the association between risk behaviours/states in adolescence and negative health, social and economic outcomes through young adulthood. Methods: The Raine Study is a prospective cohort study which recruited pregnant women in 1989-91, in Perth, Western Australia. The offspring cohort (N = 2,868) was followed up at regular intervals from 1 to 27 years of age. These data will be linked to State government health and welfare administrative data. We will empirically examine relationships across multiple domains of risk (for example, substance use, sexual behaviour, driving) with health and social outcomes (for instance, road-crash injury, educational underachievement). Microsimulation models will measure the impact of risk-taking on educational attainment and labour force outcomes. Discussion: Comprehensive preventive child health programmes and policy prioritise a healthy start to life. This is the first linkage study focusing on adolescence to adopt a multi-domain approach, and to integrate health economic modelling. This approach captures a more complete picture of health and social impacts of risk behaviour/​states in adolescence and young adulthood.

An economic analysis of the cost of survival of micro preemies: A systematic review.

OBJECTIVE: This study aimed to systematically review the current literature on the economic costs of micro preemie as well as evidence on the cost-effectiveness of interventions to improve outcomes for micro preemie babies with a birth weight of ≤500 g. METHOD: We searched MEDLINE, CINAHL, Scopus, ECONLIT, Business Source Premier and Cochrane Library for studies reporting costs of micro preemie from January 2000. Costs were inflated to 2019 United States dollars (US$). All full-text articles were assessed for eligibility and a quality assessment of included articles was conducted using the Drummond and the Larg and Moss checklists. RESULTS: The search identified three studies that met the inclusion criteria; two cost-of-illness studies and one cost-effectiveness study. Across studies, the mean healthcare spending per micro preemie survivor (in 2019 US$) ranged from US$61,310 (birth admission) to US$263,958 (inpatient and outpatient for the first six months of life). One modelling study reported exclusive human milk diet for micro preemies at birth was more cost-effective compared to the standard approach with cow milk diet from the third-party payer and societal perspectives. CONCLUSION: Despite significant advances in perinatal care and expanded access to life-saving equipment to improve survival outcomes of micro preemie, there remains a paucity of research on economic costs associated with these babies. No study has utilised quality-adjusted life-years as an outcome measure. Given the chronic conditions and long-term neurologic disability associated with micro preemie survivors, an estimate of the lifetime cost to the individual, healthcare providers and society would provide a benchmark of the potential cost-savings that could accrue from cost-effective interventions to improve the survival rate of micro preemies.

Use of Whole-Genome Sequencing for Mitochondrial Disease Diagnosis.

BACKGROUND AND OBJECTIVES: Mitochondrial diseases (MDs) are the commonest group of heritable metabolic disorders. Phenotypic diversity can make molecular diagnosis challenging, and causative genetic variants may reside in either mitochondrial or nuclear DNA. A single comprehensive genetic diagnostic test would be highly useful and transform the field. We applied whole-genome sequencing (WGS) to evaluate the variant detection rate and diagnostic capacity of this technology with a view to simplifying and improving the MD diagnostic pathway. METHODS: Adult patients presenting to a specialist MD clinic in Sydney, Australia, were recruited to the study if they satisfied clinical MD (Nijmegen) criteria. WGS was performed on blood DNA, followed by clinical genetic analysis for known pathogenic MD-associated variants and MD mimics. RESULTS: Of the 242 consecutive patients recruited, 62 participants had "definite," 108 had "probable," and 72 had "possible" MD classification by the Nijmegen criteria. Disease-causing variants were identified for 130 participants, regardless of the location of the causative genetic variants, giving an overall diagnostic rate of 53.7% (130 of 242). Identification of causative genetic variants informed precise treatment, restored reproductive confidence, and optimized clinical management of MD. DISCUSSION: Comprehensive bigenomic sequencing accurately detects causative genetic variants in affected MD patients, simplifying diagnosis, enabling early treatment, and informing the risk of genetic transmission.

From the United Kingdom to Australia-Adapting a Web-Based Self-management Education Program to Support the Management of Type 2 Diabetes: Tutorial.

Diabetes self-management education and support can improve outcomes in people with diabetes. Providing health interventions via digital modes of delivery can extend the reach of programs delivered through traditional means. The web-based version of the Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (MyDESMOND) is a digital diabetes education and support program for people with type 2 diabetes. The program was originally developed in the United Kingdom and is evidence-based, grounded in behavioral theory, and designed through a rigorous process of intervention mapping. As such, MyDESMOND was considered an ideal candidate for adaptation to the Australian setting. Program content and the digital platform were modified to suit the local context to increase the likelihood that the revised version of MyDESMOND will deliver similar outcomes to the original program. The aim of this paper is to describe the systematic processes undertaken to adapt the digital MyDESMOND diabetes education and support program for people with type 2 diabetes to the Australian setting. The adaptation involved a multidisciplinary group with a diverse range of skills and expertise-a governance structure was established, a skilled project team was appointed, and stakeholder engagement was strategically planned. The adaptation of the program content included modifications to the clinical recommendations, the inclusion of local resources, practical changes, and revisions to optimize readability. A 2-stage independent review of the modified content was enacted. Digital adaptations were informed by relevant standards, local legislative requirements, and considerations of data sovereignty. The digital platform was extensively tested before deployment to the production setting. MyDESMOND is the first evidence-based digital diabetes education and support program for Australians with type 2 diabetes. This paper provides a road map for the adaptation of digital health interventions to new contexts.