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Purpose: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. Methods: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. Results: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. Conclusion: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers. [ABSTRACT FROM AUTHOR]

The comparative analysis of artifact assemblages is simultaneously enticing and daunting. New research questions can potentially be addressed but a number of limiting factors can hinder the process. The first section of this paper will examine these limitations; the remainder of the paper proposes a model for conducting comparative research via archaeological biography, data mining, and tracing material and quality-of-life trajectories. The model was developed for the Gold Rush Lives project, which seeks to trace how everyday people faired in gold-rush era cities in Victoria, Australia. Drawing from the comparison of two households in Little Lon, Melbourne, the paper will make the case for comparing material trajectories rather than data. [ABSTRACT FROM AUTHOR]

This study was designed to understand the interaction between Christian faith and gender incongruence. An anonymous online survey was advertised to the Australian Christian community. Individuals with first-hand experience of transgender issues were eligible to participate. There were 122 eligible responses. This paper describes the experience of the 30 participants experiencing gender incongruence. Persons in the church experiencing gender incongruence desired to hold onto faith. As a result, they experienced a tension between the desire to remain in the church, and the desire to live congruously with their gender, which could lead to expulsion. Strategies to reconcile these two factors varied. [ABSTRACT FROM AUTHOR]

This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of 'best interests' but these have not yet been adopted. In particular, although courts have discounted assessment of 'quality of life' as a legitimate component of determination of 'best interests,' this remains a prominent component of clinical guidelines. In addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective. [ABSTRACT FROM AUTHOR]

The economic and social contribution young people make to society is increasingly important as the population ages. Yet a substantial number of young people face economic and social challenges that have an impact on their current and future well-being. Independent indicators are often used to describe what we know about how young people are faring, but these fail to show how young people are doing holistically, across their whole life. If we are to better understand and improve young people's well-being and their lives more generally, it is critical that research establishes the connections and interactions between life domains. This paper uses a well-being framework and secondary analysis of national statistics to begin to understand how young people are faring when we cross economic outcomes with other social indicators. It argues that some Australian young people fare poorly across a large number of other social indicators and thus may be walking a tightrope in regard to their well-being and well-becoming. This paper also aims to generate a dialogue about using a well-being framework for future research with and about young people. [ABSTRACT FROM AUTHOR]

This paper discusses two key strategies detailing how "relationship-focused" and "trauma-informed" intervention practices, which form the basis of an Australian therapeutic program called Treatment and Care for Kids (TrACK), made a difference in the lives of highly traumatised children. The TrACK program fosters highly traumatised children who, due to the complexity of their trauma needs, cannot be placed in traditional generalist foster care. Case files of 48 children were reviewed. Children were either current or former clients over a period of 18 years since the program was initiated. In analysing the data, we noticed that children who were once highly dysregulated in the domains of foster care placement, education, arousal regulation and peer relationships were now enjoying an enhanced level of stability in their lives. [ABSTRACT FROM AUTHOR]

Objectives: Patient reported experience measures (PREMs) are tools often utilised in hospitals to support quality improvements and to provide objective feedback on care experiences. Less commonly PREMs can be used to support consumers choices in their hospital care. Little is known about the experience and views of the Australian consumer regarding PREMs nor the considerations these consumers have when they need to make decisions about attending hospital. This study aimed to explore consumer awareness of PREMs, consumer attitudes towards PREMs and the utility of PREMs as a decision-making tool in accessing hospital care. Methods: Qualitative study involving semi-structured interviews conducted over the phone. Participants (n = 40) were recruited from across Australia and purposively sampled according to key characteristics: holding private health insurance, > 30-years of age, may have accessed private hospital care in the past year, variety of educational and cultural backgrounds, and if urban or rural residing. Interviews were audio-recorded, transcribed, and analysed thematically. Results: Four overarching themes and six subthemes were identified from the data. Major findings were that prior awareness of PREMs was limited; however, many had filled in a PREM either for themselves or for someone they cared for following a hospital stay. Most respondents preferred to listen to experience of self or family/friends or the recommendation of their physician when choosing a hospital to attend. Participants appeared to be more interested in the treating clinician than the hospital with this clinician often dictating the hospital or hospital options. If provided choice in hospital, issues of additional costs, timeliness of treatment and location were important factors. Conclusion: While PREMs were considered a possible tool to assist in hospital decision-making process, previous hospital experiences, the doctor and knowing up-front cost are an overriding consideration for consumers when choosing their hospital. Consideration to format and presentation of PREMs data is needed to facilitate understanding and allow meaningful comparisons. Future research could examine the considerations of those consumers who primarily access public healthcare facilities and how to improve the utility of PREMs. [ABSTRACT FROM AUTHOR]

Caregivers of children with neurodiverse needs are known to experience challenges and hardship due to the increased needs of the child and the lack of support available. This study aimed to explore the support needs and well-being of caregivers of children with neurodiverse needs in Australia. Sixty-six caregivers participated in an online survey asking questions about support needs. The results highlighted five main themes that caregivers commonly experienced including: barriers to community engagement, impact on close relationships, negative impact on mental health and identity, financial hardship, and identified support needs. Findings identified multiple unmet needs existing amongst caregivers and further emphasises the importance of addressing these needs to improve the quality of life of caregivers of children with neurodiverse needs. [ABSTRACT FROM AUTHOR]

Background: Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report. Objectives: To assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC). Methods: A cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores. Results: Sixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective. Conclusion: Regardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care. [ABSTRACT FROM AUTHOR]

Background: The Pediatric Quality of Life Inventory™ 4.0 Short Form 15 Generic Core Scales (hereafter the PedsQL) and the Child Health Utility-9 Dimensions (CHU9D) are two generic instruments designed to measure health-related quality of life in children and adolescents in the general population and paediatric patient groups living with specific health conditions. Although the PedsQL is widely used among paediatric patient populations, presently it is not possible to directly use the scores from the instrument to calculate quality-adjusted life-years (QALYs) for application in economic evaluation because it produces summary scores which are not preference-based.Objective: This paper examines different econometric mapping techniques for estimating CHU9D utility scores from the PedsQL for the purpose of calculating QALYs for cost-utility analysis.Methods: The PedsQL and the CHU9D were completed by a community sample of 755 Australian adolescents aged 15-17 years. Seven regression models were estimated: ordinary least squares estimator, generalised linear model, robust MM estimator, multivariate factorial polynomial estimator, beta-binomial estimator, finite mixture model and multinomial logistic model. The mean absolute error (MAE) and the mean squared error (MSE) were used to assess predictive ability of the models.Results: The MM estimator with stepwise-selected PedsQL dimension scores as explanatory variables had the best predictive accuracy using MAE and the equivalent beta-binomial model had the best predictive accuracy using MSE.Conclusions: Our mapping algorithm facilitates the estimation of health-state utilities for use within economic evaluations where only PedsQL data is available and is suitable for use in community-based adolescents aged 15-17 years. Applicability of the algorithm in younger populations should be assessed in further research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: The health inequalities experienced by Aboriginal and Torres Strait Islander Australians are well documented but there are few empirical data outlining the burden, consequences, experience and expression of depressive illness. This paper seeks to address the lack of accessible, culturally specific measures of psychosocial stress, depression or quality of life developed for, and validated within, this population.Methods: Building on an extensive qualitative phase of research, a psychosocial questionnaire comprising novel and adapted scales was developed and piloted with 189 Aboriginal men across urban and remote settings in central Australia. With a view to refining this tool for future use, its underlying structure was assessed using exploratory factor analysis, and the predictive ability of the emergent psychosocial constructs assessed with respect to depressive symptomatology.Results: The latent structure of the psychosocial questionnaire was conceptually aligned with the components of the a priori model on which the questionnaire was based. Regression modelling indicated that depressive symptoms were driven by a sense of injury and chronic stress and had a non-linear association with socioeconomic position.Conclusions: This represents the first community-based survey of psychosocial stress and depression in Aboriginal men. It provides both knowledge of, and an appropriate process for, the further development of psychometric tools, including quality of life, in this population. Further research with larger and more diverse samples of Aboriginal people is required to refine the measurement of key constructs such as chronic stress, socioeconomic position, social support and connectedness. The further refinement, validation against criterion-based methods and incorporation within primary care services is essential. [ABSTRACT FROM AUTHOR]

Introduction: Australia's population is steadily growing older, with older persons expected to make up over 20% of the population by 2066. Ageing is strongly associated with a significant drop in cognitive ability, ranging from mild cognitive impairment to severe cognitive impairment (dementia). This study examined the association between cognitive impairment and health-related quality of life (HRQoL) in older Australians. Methods: Two waves of longitudinal data from the nationally representative Household, Income and Labour Dynamics in Australia (HILDA) survey were utilised, with the age cut-off for older Australians defined as above 50. The final analysis included 10,737 person-year observations from 6892 unique individuals between 2012 and 2016. This study utilised the Backwards Digit Span (BDS) test and Symbol Digit Modalities test (SDMT) to assess cognitive function. HRQoL was measured using the physical and mental component summary scores of the SF-36 Health Survey (PCS and MCS). Additionally, HRQoL was measured using health state utility values (SF-6D score). A longitudinal random-effects GLS regression model was used to analyse the association between cognitive impairment and HRQoL. Results: This study found that approximately 89% of Australian adults aged 50 or older had no cognitive impairment, 10.16% had moderate cognitive impairment, and 0.72% had severe cognitive impairment. This study also found that moderate and severe cognitive impairment were both negatively associated with HRQoL. Older Australians with moderate cognitive impairment scored worse on the PCS (β = − 1.765, SE = 0.317), MCS (β = − 1.612, SE = 0.326), and SF-6D (β = − 0.024, SE = 0.004) than peers without cognitive impairment given other covariates reference categories remain constant. Older adults experiencing severe cognitive had lower PCS (β = − 3.560, SE = 1.103), and SF-6D (β = − 0.034, SE = 0.012) scores compared to their counterparts with no cognitive impairment given other covariates reference categories remain constant. Conclusion: We found evidence that HRQoL is negatively associated with cognitive impairment. Our findings will be beneficial for the future cost-effectiveness intervention targeted at reducing cognitive impairment since it provides information on the disutility associated with moderate and severe cognitive impairment. [ABSTRACT FROM AUTHOR]

Summary: The quality of life during the first 4 months after fracture was estimated in 2,808 fractured patients from 11 countries. Analysis showed that there were significant differences in the quality of life (QoL) loss between countries. Other factors such as QoL prior fracture and hospitalisation also had a significant impact on the QoL loss. Introduction: The International Costs and Utilities Related to Osteoporotic Fractures Study (ICUROS) was initiated in 2007 with the objective of estimating costs and quality of life related to fractures in several countries worldwide. The ICUROS is ongoing and enrols patients in 11 countries (Australia, Austria, Estonia, France, Italy, Lithuania, Mexico, Russia, Spain, UK and the USA). The objective of this paper is to outline the study design of ICUROS and present results regarding the QoL (measured using the EQ-5D) during the first 4 months after fracture based on the patients that have been thus far enrolled ICUROS. Methods: ICUROS uses a prospective study design where data (costs and quality of life) are collected in four phases over 18 months after fracture. All countries use the same core case report forms. Quality of life was collected using the EQ-5D instrument and a time trade-off questionnaire. Results: The total sample for the analysis was 2,808 patients (1,273 hip, 987 distal forearm and 548 vertebral fracture). For all fracture types and countries, the QoL was reduced significantly after fracture compared to pre-fracture QoL. A regression analysis showed that there were significant differences in the QoL loss between countries. Also, a higher level of QoL prior to the fracture significantly increased the QoL loss and patients who were hospitalised for their fracture also had a significantly higher loss compared to those who were not. Conclusions: The findings in this study indicate that there appear to be important variations in the QoL decrements related to fracture between countries. [ABSTRACT FROM AUTHOR]

By almost all measures of objective life quality, Indigenous Australians are disadvantaged relative to the general population. However, no measures of their Subjective Wellbeing (SWB) have been published. This paper presents the first such data, norm-referenced to the general Australian population. A total of 519 Indigenous adolescents, aged between 12 and 19 years, were administered the Personal Wellbeing Index-School Children, which measures SWB. This scale is a parallel form of the Personal Wellbeing-Adult. The PWI-SC exhibited adequate psychometric properties. Moreover, consistent with SWB Homeostasis theory, participants' mean SWB was within the Australian adult normative range. However, female SWB was lower than males. These results suggest that Indigenous adolescents are resilient. [ABSTRACT FROM AUTHOR]

We estimate the cost of droughts by matching rainfall data with individual life satisfaction. Our context is Australia over the period 2001 to 2004, which included a particularly severe drought. Using fixed-effect models, we find that a drought in spring has a detrimental effect on life satisfaction equivalent to an annual reduction in income of A$18,000. This effect, however, is only found for individuals living in rural areas. Using our estimates, we calculate that the predicted doubling of the frequency of spring droughts will lead to the equivalent loss in life satisfaction of just over 1% of GDP annually. [ABSTRACT FROM AUTHOR]

Few studies have investigated how older people themselves conceptualize and talk about what they do with their time. Even fewer have addressed such issues from the perspective of older people whose living arrangements and lifestyles diverge from majority, middle-class pathways. This paper draws on in-depth interview data from the Ageing Men's Health Project, a three-year ethnographic study of the health, housing, and service use of low income, single, non-homeowning men aged 50 years and over, living in the inner city of Sydney, Australia. Among other topics, the men were asked to describe an average day and otherwise elaborate on the everyday circumstances of their lives. Findings highlight the extent to which the men's everyday lives are constrained and curtailed by economic disadvantage and health deficits. At the same time, the men invest their activities with a range of sociocultural meanings that do not always match professionally constructed categories and understandings. In particular, social relationships with other men appear to be central to the meanings they confer on everyday life. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures (PROMs) provide a measure of self-perceived health status or health-related quality of life. They have been used to support provider-patient decisions, healthcare delivery, and value-based healthcare models. A barrier to routine collection of PROMs is the perception that PROMs lack clinical utility. As such, it is important to establish clinicians' acceptability of the PROM prior to large-scale implementation. This study explored the acceptability of the routine use and collection of a generic PROM in healthcare services from the perspective of healthcare staff. Methods: Individual semi-structured interviews were completed from September 2020 to March 2021 with 26 staff from two multi-disciplinary community healthcare services in Melbourne, Australia. Interviews explored their experiences of using the EQ-5D-5L in their routine care. Interviews were recorded and transcribed verbatim. Data were analysed according to a framework approach, using inductive and deductive techniques. Results: Participants discussed the acceptability of the EQ-5D-5L with reference to four themes: practicalities of use; holistic nature; influence on client care; and influence on health service. Participants found the EQ-5D-5L quick and easy to administer, and appreciated that it measured multiple domains of health that were relevant to their clients' care. They believed the EQ-5D-5L helped to identify client problems, and inform service delivery. They also reported features that were less acceptable, including a lack of item specificity to some healthcare disciplines. Participants reported the challenge of managing conflict between their assessment of the client's health and the client's perspective of their own health, leading some to question whether the client could provide an accurate reflection of their own health. Conclusions: The EQ-5D-5L has several features that healthcare staff viewed as acceptable for routine collection and use in healthcare. Training on the validity of the patient reported perspective and broadening the scope of PROMs collection beyond the EQ-5D-5L should be considered to facilitate large-scale implementation. [ABSTRACT FROM AUTHOR]

Objectives: To assess whether consumption of lean red meat on three exercise training days per week can promote greater improvements than exercise alone in health-related quality of life (HR-QoL) in community-dwelling older adults. Design: This study is a secondary analysis from a 6 month, two-arm, parallel randomized controlled trial conducted in 2014 and 2015. Setting: Community-dwelling older adults living in metropolitan Melbourne, Australia. Participants: One hundred and fifty-four men and women aged ≥65 years. Intervention: All participants were enrolled in a multi-component, resistance-based exercise program (3 d/week) and randomly allocated to either a group asked to consume lean red meat (2x80g cooked servings/day) on each of the three training days (Ex+Meat, n=77) or a control group asked to consume one serving of carbohydrates (1/2 cup rice/pasta or 1 medium potato; Ex+C, n=77). Measurements: HR-QoL was assessed using the Short-Form (SF)-36 health survey. Results: Overall 62% of the participants were female, the mean age was 70.7 years (range 65 to 84 years), approximately 67% of participants were classified as either overweight or obese, and the average number of chronic conditions was two. A total of 145 participants (94%) completed the study. Mean baseline HR-QoL scores were comparable to the mean for the Australian population [Global HR-QoL (mean ± SD): Ex+Meat, 49.99 ± 6.57; Ex+C, 50.49 ± 5.27]. General Linear Mixed Models examining within and between group changes over time revealed that after 6 months, there were no within-group changes in either Ex+Meat or Ex+C nor any between-group differences for any measure of HR-QoL, with the exception that the mental health subscale improved in Ex+C versus Ex+Meat [net difference for change, −2.32 (95% CI), −4.73, 0.09, P=0.048] after adjusting for relevant covariates and the physical function subscale improved in Ex+Meat relative to baseline [mean change (95% CI), 1.88 (0.37, 3.39), P=0.011]. Conclusion: A multi-component resistance-based training program performed with and without the provision of lean red meat in line with current Australian dietary guidelines on each of the three training days, did not improve HR-QoL in healthy community-dwelling older adults. [ABSTRACT FROM AUTHOR]

Summary: This study identified that an 18-month community-based, multifaceted, exercise program consisting of resistance, weight-bearing impact, and balance/mobility training combined with osteoporosis education and behavioural support can improve health-related quality of life (HRQoL) and osteoporosis knowledge in older adults at risk of fracture, but only for those adherent to the exercise regime. Purpose: To evaluate the effects of an 18-month community-based exercise, osteoporosis education and behaviour change program (Osteo-cise: Strong Bones for Life) on HRQoL, osteoporosis knowledge and osteoporosis health beliefs. Methods: This was a secondary analysis of an 18-month randomised controlled trial in which 162 older adults aged ≥ 60 years with osteopenia or increased falls/fracture risk were randomized to the Osteo-cise program (n = 81) or control group (n = 81). The program consisted of progressive resistance, weight-bearing impact and balance training (3 days/week); osteoporosis education to facilitate self-management of musculoskeletal health and behavioural support to enhance adherence to exercise. HRQoL, osteoporosis knowledge and osteoporosis health beliefs were assessed using the EuroQoL questionnaire (EQ-5D-3L), Osteoporosis Knowledge Assessment Tool and Osteoporosis Health Belief Scale, respectively. Results: Overall, 148 participants (91%) completed the trial. Mean exercise adherence was 55% and mean attendance for the three osteoporosis educational sessions ranged from 63-82%. After 12 and 18 months, there were no significant effects of the Osteo-cise program on HRQoL, osteoporosis knowledge or health beliefs relative to controls. Per protocol analyses (≥ 66% exercise adherence; n = 41) revealed a significant net benefit in EQ-5D-3L utility for the Osteo-cise group relative to controls after 12 months (P = 0.024) and 18 months (P = 0.029) and a significant net improvement in osteoporosis knowledge scores at 18 months (P = 0.014). Conclusion: This study supports the importance of adherence to exercise regimes, as adherence to the Osteo-cise: Strong Bones for Life program was associated with improvements in HRQoL and osteoporosis knowledge in older adults at increased risk for falls and fractures. Trial registration number: ACTRN12609000100291. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis (MS) is an inflammatory, neurodegenerative disease of the central nervous system which results in disability over time and reduced quality of life. To increase the sensitivity of the EQ-5D-5L for psychosocial health, four bolt-on items from the AQoL-8D were used to create the nine-item EQ-5D-5L-Psychosocial. We aimed to externally validate the EQ-5D-5L-Psychosocial in a large cohort of people with MS (pwMS) and explore the discriminatory power of the new instrument with EQ-5D-5L/AQoL-8D. Methods: A large representative sample from the Australian MS Longitudinal Study completed the AQoL-8D and EQ-5D-5L (including EQ VAS) and both instruments health state utilities (HSUs) were scored using Australian tariffs. Sociodemographic/clinical data were also collected. External validity of EQ-5D-5L-Psychosocial scoring algorithm was assessed with mean absolute errors (MAE) and Spearman's correlation coefficient. Discriminatory sensitivity was assessed with an examination of ceiling/floor effects, and disability severity classifications. Results: Among 1683 participants (mean age: 58.6 years; 80% female), over half (55%) had moderate or severe disability. MAE (0.063) and the distribution of the prediction error were similar to the original development study. Mean (± standard deviation) HSUs were EQ-5D-5L: 0.58 ± 0.32, EQ-5D-5L-Psychosocial 0.62 ± 0.29, and AQoL-8D: 0.63 ± 0.20. N = 157 (10%) scored perfect health (i.e. HSU = 1.0) on the EQ-5D-5L, but reported a mean HSU of 0.90 on the alternative instruments. The Sleep bolt-on dimension was particularly important for pwMS. Conclusions: The EQ-5D-5L-Psychosocial is more sensitive than the EQ-5D-5L in pwMS whose HSUs approach those reflecting full health. When respondent burden is taken into account, the EQ-5D-5L-Psychosocial is preferential to the AQoL-8D. We suggest a larger confirmatory study comparing all prevalent multi-attribute utility instruments for pwMS. [ABSTRACT FROM AUTHOR]

The objectives of this study are to assess the association between childhood bullying and preference-based health-related quality of life (QoL) in Australian school children and their parents and estimate quality-adjusted life years (QALYs) associated with bullying chronicity. Children aged 8–10 years completed the child health utilities (CHU-9D), while parents completed the Australian quality of life (AQoL-8D). Children were grouped into four categories of bullying involvement (no bullying, victim, perpetrator, or both perpetrator and victim) based on the Revised Olweus Bully/Victim Questionnaire. Parental data were compared across two bullying involvement groups (bullying vs. no bullying). QALYs were calculated for children over two years and comparisons made based on the number of assessments where bullying was reported (baseline, 1- and 2-year follow up). Children who were involved in bullying (victims and/or perpetrators) reported statistically significantly lower mean utility scores compared to children who were not involved in bullying. Parents whose child was involved in bullying had significantly lower mean utility scores compared to parents of children not involved with bullying. There appeared to be a dose–response relationship, with higher QALY losses associated with increasing frequency of reported bullying. Bullying among Australian school children was associated with significantly lower preference-based QoL for themselves and their parents. This study also confirmed the significant burden of disease for bullying among children measured by an incremental decrease in QALY with an increasing chronicity of bullying over time. [ABSTRACT FROM AUTHOR]

A succession of interconnected environmental factors is believed to contribute substantially to the development of autism spectrum disorder (ASD). This exploratory study therefore aims to identify potential risk factors for ASD that are associated with pregnancy, birth and infant feeding. Demographic and health-related data on children aged 3–13 years (N = 4306) was collected through an online survey completed by biological mothers. A fitted logistic regression model identified advanced maternal age, prenatal bleeding, pre-eclampsia, perinatal pethidine usage, foetal distress before birth and male sex of child as associated with an increased risk of ASD, whereas longer gestational duration demonstrated a protective effect. These findings highlight potential risk factors and predictor interrelationships which may contribute to overall ASD risk. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: This study aims to investigate the effect of physical violence and serious injury on health-related quality of life in the Australian adult population.Methods: This study utilised panel data from the Household, Income and Labour Dynamics in Australia (HILDA) Survey. HRQoL was measured through the physical component summary (PCS), mental component summary (MCS), and short-form six-dimension utility index (SF-6D) of the 36-item Short-Form Health Survey (SF-36). Longitudinal fixed-effect regression models were fitted using 19 waves of the HILDA Survey spanning from 2002 to 2020.Results: This study found a negative effect of physical violence and serious injury on health-related quality of life. More specifically, Australian adults exposed to physical violence and serious injury exhibited lower levels of health-related quality of life. Who experienced physical violence only had lower MCS (β = -2.786, 95% CI: -3.091, -2.481) and SF-6D (β = -0.0214, 95% CI: -0.0248, -0.0181) scores if switches from not experiencing physical violence and serious injury. Exposed to serious injury had lower PCS (β = -5.103, 95% CI: -5.203, -5.004), MCS (β = -2.363, 95% CI: -2.480, -2.247), and SF-6D (β = -0.0585, 95% CI: -0.0598, -0.0572) score if the adults not experiencing physical violence and serious injury. Further, individuals exposed to both violence and injury had substantially lower PCS (β = -3.60, 95% CI: -4.086, -3.114), MCS (β = -6.027, 95% CI: -6.596, -5.459), and SF-6D (β = -0.0716, 95% CI: -0.0779, -0.0652) scores relative to when the individuals exposed to none.Conclusion: Our findings indicate that interventions to improve Australian adults' quality of life should pay particular attention to those who have experienced physical violence and serious injury. Our findings suggest unmet mental health needs for victims of physical violence and serious injuries, which calls for proactive policy interventions that provide psychological and emotional therapy. [ABSTRACT FROM AUTHOR]

Background: Health-related quality of life (HRQoL) is an important outcome measure when considering medical treatment; however, the impact of polypharmacy on trajectories of HRQoL over time is unknown. This study aimed to investigate the association between polypharmacy status and trajectories of HRQoL in older adults. Methods: A longitudinal cohort study of 2181 community-dwelling adults, 65 years and older, who participated in the 2013 to 2017 waves of the Household Income and Labour Dynamics in Australia (HILDA) Survey. Polypharmacy was defined as the regular use of ≥ 5 prescription medications. Polypharmacy status was categorised into no polypharmacy, in 2013 only (baseline only polypharmacy), in 2017 only (incident polypharmacy) or at both time points (persistent polypharmacy). HRQoL was assessed through the SF-36 questionnaire generating two summary scores: physical component summary (PCS) and mental component summary (MCS). Linear mixed-effects models stratified according to polypharmacy status and change in comorbidities were used to assess trajectories of HRQoL. Results: Older adults with persistent polypharmacy had lowest scores for HRQoL measures from 2013 to 2017. After adjusting for all covariates, those with incident polypharmacy had the steepest annual decline in both the PCS and MCS: − 0.86 in PCS and − 0.76 in MCS for those with decreasing or stable comorbidities, and − 1.20 in PCS and − 0.75 in MCS for those with increasing comorbidities. Conclusions: Polypharmacy was associated with poorer HRQoL, even after adjusting for confounders. Incident polypharmacy was found to be associated with a clinically important decline in HRQoL and this should be considered when prescribing additional medication to older adults. [ABSTRACT FROM AUTHOR]

Measuring and valuing health-related quality of life (HRQOL) in children can be challenging but is an important component for providing decision makers with accurate information to fund new interventions, including medicines and vaccines for public subsidy. We review funding submissions of medicines made to the Pharmaceutical Benefits Advisory Committee contained in public summary documents to examine the use of child-specific HRQOL measures in decision making in Australia. A sample frame of medicines used by children was derived from four sources. Public summary documents relating to these medicines were searched in the Pharmaceutical Benefits Advisory Committee web resources for whether they related to children (aged under 18 years) and contained HRQOL information and/or cost-utility analyses. Data about the use of utilities in decision making were extracted and analysed. Of the 1889 public summary documents available, 62 public summary documents (29 medicines) contained information pertaining to children and utilities. Of these, four public summary documents included child-specific HRQOL measures, 16 included adult HRQOL measures, 11 included direct elicitation and the HRQOL source was not defined in 31 documents. Excluding documents using child-specific HRQOL measures, we considered that in 85% of medicines, decision making uncertainty might have been reduced by using child-specific HRQOL measures. Despite the growing literature on economic analysis in paediatric populations, the use of child-specific HRQOL measures in submissions to the Pharmaceutical Benefits Advisory Committee was minimal. Submissions involved inconsistent approaches, use of adult measures and weights, and substantial gaps in evidence. We recommend the consistent use of child-specific measures to improve the evidence base for decisions about medicines for children in Australia. [ABSTRACT FROM AUTHOR]

One of the major tasks of the United Nations Permanent Forum on Indigenous Issues (UNPFII) following its establishment in 2000 has been to establish statistical profiles of the world’s Indigenous peoples. As part of this broad task, it has recommended that the Millennium Development Goals and other global reporting frameworks should be assessed with a view to incorporating greater recognition of Indigenous concerns, interests, and interpretations of development and well-being. This article reviews the conceptual basis for this recommendation and compares the activities of the UNPFII towards the development of appropriate indicators with the practices of the Australian government in measuring disadvantage among Indigenous peoples in that country. Indigenous peoples’ own perceptions and understandings of well-being are seen to extend beyond and sometimes conflict with conventional reporting frameworks with the latter constructed more around processes of governmentality than Indigenous priorities. [ABSTRACT FROM AUTHOR]

The Personal Wellbeing Index (PWI) is being developed for the cross-cultural measurement of subjective wellbeing (SWB). This paper reports the findings of its utility with the Hong Kong Chinese and Australian populations. An item on affect, ‘satisfaction with own happiness’ was also investigated to determine whether it should be added to the index. Three-hundred and sixty participants (180 per country), with equal representation from groups aged 18–35, 35–64 and 65 years and above, were recruited from each country. The PWI demonstrated good psychometric performance in terms of its reliability, validity and sensitivity, which are comparable in both countries. The item ‘satisfaction with own happiness’ was found to contribute significantly to the scale’s psychometric performance in Australia but not in Hong Kong. Cultural differences in the perception of the concepts ‘satisfaction’ and ‘happiness’ were suggested as an explanation for this finding. The PWI data are also consistent with homeostasis theory, which proposes that each person’s SWB level is maintained within a limited positive range. For the Australian population, their mean SWB level fell within the established Western range of 70–80, on a scale from 0 to 100. The Hong Kong population, however, fell below this range. Cultural response bias was identified as a plausible explanation for the differences between the Hong Kong and Australian samples. [ABSTRACT FROM AUTHOR]

Purpose: Headspace services provide treatment options to young people seeking mental healthcare. To obtain a better understanding of needs and characteristics of this population, and effectively evaluate services, we require novel youth-specific outcome measures. As part of our broad research program to establish such measures, a sample of young people were recruited and assessed. The study describes (i) methodology used to obtain clinical, functioning, and substance use characteristics of young people presenting to headspace services; and (ii) an overview of these characteristics.Methods: Young people presenting to headspace centres were recruited. Multidimensional information was obtained relating to clinical and functional outcomes, demographic information, and lifestyle factors.Results: 1107 young help-seeking individuals were recruited. Participants were most likely young adults aged M = 18.1 years, SD = 3.3, with diagnoses of depression and/or anxiety (76.6%, n = 801), engaged in work and study (84.9%, n = 890), and living with parent(s) (68.9%, n = 736). Impairments in functioning were moderate as indicated by the Social and Occupational Functioning Assessment Scale (M = 65.2, SD = 9.5), substance use was common (alcohol 62.7%, n = 665; illicit substances 30.5%, n = 324), and current suicidal ideation was reported by a third (33.6%, n = 358).Conclusions: A broad dataset was obtained providing an insight into key clinical, functional and quality of life characteristics of these individuals. We observed that young people present with complex problems, comorbid diagnoses, moderate levels of symptomatology, impairments in functioning, substance use, and suicidal ideation. This work provides the foundation for our broader research program aiming to develop novel, relevant and youth-specific, change and outcome measures. [ABSTRACT FROM AUTHOR]

Background: Headache disorders are highly prevalent worldwide, but not well investigated in adolescents. Few studies have included representative nationwide samples. This study aimed to present the prevalence and burden of recurrent headache in Australian adolescents. Methods: The prevalence of recurrent headache, headache characteristics (severity and frequency) and burden on health-related quality of life in Australian children aged 10–17 years were presented, using nationally representative data from the Longitudinal Study of Australian children (LSAC). The LSAC, commencing in 2004, collects data every 2 years from a sample of Australian children of two different age cohorts: B 'baby' cohort, aged 0–1 years and K 'kindergarten' cohort, aged 4–5 years at the commencement of the study. Face-to-face interviews and self-complete questionnaires have been conducted with the study child and parents of the study child (carer-reported data) at each data collection wave, with seven waves of data available at the time of the current study. Wave 7 of the LSAC was conducted in 2016, with B cohort children aged 12–13 years and K cohort children aged 16–17 years. For the current study, data were accessed for four out of seven waves of available data (Wave 4–7) and presented cross-sectionally for the two cohorts of Australian children, for the included age groups (10–11 years, 12–13 years, 14–15 years and 16–17 years). All available carer-reported questionnaire data pertaining to headache prevalence, severity and frequency, general health and health-related quality of life, for the two cohorts, were included in the study, and presented for male and female adolescents. Carer-reported general health status of the study child and health-related quality of life scores, using the parent proxy-report of the Paediatric Quality of Life Inventory™ 4.0, were compared for male and female adolescents with recurrent headache and compared with a healthy group. Finally, health-related quality of life scores were compared based on headache frequency and severity. Results: The LSAC study initially recruited 10,090 Australian children (B cohort n = 5107, K cohort n = 4983), and 64.1% of the initial sample responded at wave 7. Attrition rates across the included waves ranged from 26.3% to 33.8% (wave 6 and 7) for the B cohort, and 16.3% to 38.0% (wave 4–7) for the K cohort. Recurrent headache was more common in females, increasing from 6.6% in 10–11 years old females to 13.2% in 16–17 years old females. The prevalence of headache in males ranged from 4.3% to 6.4% across the age groups. Health-related quality of life scores were lower for all functional domains in adolescents with recurrent headache, for both sexes. Headache frequency, but not severity, was significantly associated with lower health-related quality of life scores, in both males and females. Conclusions: Recurrent headache was common among Australian adolescents and increased in prevalence for females, across the age groups. Frequent recurrent headache is burdensome for both male and female adolescents. This study provides information regarding the prevalence and burden of recurrent headache in the adolescent population based on findings from the Longitudinal Study of Australian Children. [ABSTRACT FROM AUTHOR]

Social prescribing, also known as "community referral", is a means of referring individuals living in the community to existing local non-clinical health, welfare, and social support services. International evidence demonstrates that social prescribing improves biopsychosocial quality of life, and burden on health services. Australia's first social prescribing pilot program for individuals with mental illness (mood and psychotic spectrum disorders) was implemented in Sydney in 2016/2017; this study evaluates that program. Participants included 13 adults who were assessed at baseline and six-month follow-up. Outcomes included self-perceived quality of life, welfare needs, health status, loneliness, social participation, and economic participation. Results indicate significant improvements in quality of life and health status. This pilot program demonstrates that social prescribing may improve participant outcomes. It fits well within Australian health policy and funding models which focus on bolstering community care, and may be scalable, particularly in geographically isolated communities. [ABSTRACT FROM AUTHOR]

This study investigated the feasibility and cultural validity of KONTAKT©, a manualised social skills group training, in improving the social functioning of adolescents with autism spectrum disorder (ASD). KONTAKT© was delivered to 17 adolescents (mage = 14.09, SDage = 1.43; 70% male) with ASD over sixteen 90 min sessions. A pre-test post-test design evaluated changes in personally meaningful social goals, symptom severity, quality of life, interpersonal efficacy, social anxiety, loneliness, and facial emotion recognition at pre, post and 3 months follow-up. Focus groups were conducted post intervention. Findings indicate that KONTAKT© may support Australian adolescents with ASD in achieving their personally meaningful social goals. This study resulted in finalisation of KONTAKT© in preparation for evaluation of its efficacy in a randomised controlled trial (Australian New Zealand Clinical Registry (ANZCTR): ACTRN12617001117303, ClinicalTrials.gov: NCT03294668). [ABSTRACT FROM AUTHOR]

Background: The use of complementary and alternative medicines (CAM) has been reported to be frequent and increasing in the general population and among cancer survivors. Very few studies have investigated the use of CAM among long-term endometrial cancer survivors. To address this gap in evidence, this qualitative study aimed to understand the use of CAM and factors motivating the use among long-term survivors of endometrial cancer.Methods: Semi-structured qualitative interviews were conducted with 17 women diagnosed with endometrial cancer 7-10 years previously, to understand their CAM use and its impact on their wellbeing. Thematic analysis was performed by two researchers to extract the most relevant quotes related to CAM products, practices, and practitioners.Results: All 17 women interviewed used some type of CAM practices, practitioners, or products, specifically 94% concentrated on their diet, 88% focused on their exercise, 59% used a CAM product, 53% visited a CAM practitioner, and 18% used a CAM psychological approach. The main motivators for CAM use included to reduce physical and psychological symptoms, and to stop or reduce medications. Women reported a lack of lifestyle advice from their traditional medical healthcare team which they therefore tried to obtain from other sources.Conclusions: Our findings suggest CAM practices, practitioners, or products form an important part of women's healthcare options and are commonly used by long-term endometrial cancer survivors. Our data can be of importance to health care professionals and hospitals, as it reflects an unfulfilled need among cancer survivors that does not currently appear to be met by their traditional healthcare team. [ABSTRACT FROM AUTHOR]

Purpose: To examine the prospective associations between body mass index (BMI) and health-related quality of life (HRQoL).Methods: Data were extracted from a longitudinal, nationally representative sample of 9916 men and women aged 18 years and over who were followed annually between 2006 and 2016 in the Household, Income and Labour Dynamics in Australia (HILDA) survey. HRQoL was assessed using the self-administered SF-36 questionnaire annually between 2006 (baseline) and 2016. BMI was calculated from self-reported height and weight and was classified into the following four categories of baseline BMI: underweight (< 18.5 kg/m2), normal weight (18.5-24.9 kg/m2), overweight (25-29.9 kg/m2) and obese (≥ 30 kg/m2). We used linear mixed-effects regression models to investigate the associations between change in BMI (kg/m2) and concurrent changes in HRQoL scores over 11 years.Results: BMI gain was associated with deterioration of Physical Component Summary (PCS) (P < 0.001), but not with change in Mental component summary (MCS) over the 11-year period. BMI gain was inversely associated (P < 0.001) with five of the eight HRQoL domains (physical functioning, role physical, bodily pain, general health and vitality) with a significant graded association according to baseline BMI category. Over the 11-year study period, every unit increase in PCS was associated with a decrease of 0.02 (P < 0.001), 0.03 (P < 0.001) and 0.04 (P < 0.001) BMI units per year among participants who were normal, overweight and obese at baseline, respectively. Five of the eight domains of HRQoL (physical functioning, role physical, bodily pain, general health and vitality) were inversely associated with BMI (P < 0.001) with a significant graded association according to baseline BMI category.Conclusions: Weight gain was not only associated with deterioration of HRQoL, and vice versa. The bi-directional association was stronger for physical than mental domains of HRQoL. [ABSTRACT FROM AUTHOR]

Background: The measurement and valuation of health-related quality of life for and by young people are increasingly important, yet research on the impact of study perspective and validity of preferences obtained from young populations remains limited.Objective: The objective of this study was to evaluate the feasibility and validity of collecting EQ-5D Youth version (EQ-5D-Y) preferences from adolescents, adults, and adults from a child perspective.Methods: A profile case best-worst scaling (BWS) online survey was administered to representative Australian and Spanish adult (age ≥ 18 years) and child (age 11-17 years) samples. Adults were told to either answer from their own perspective or for a hypothetical 10-year-old child. Marginal best- and worst-choice frequencies, analysis of dominant choices, self-reported difficulty completing the tasks, and time to complete tasks were used to determine the validity of responses.Results: In Australia, 2134 adults and 1010 adolescents completed the survey. In Spain, 2007 adults and 1000 adolescents completed it. Analysis of marginal choice frequencies and dominant choices indicated that the pattern of responses between adolescents and adults was similar. For Australian respondents, having no mobility problems was rated as best by adolescents, while adults rated having no pain and discomfort as 'best'. In Spain, both adults and adolescents rated no pain or discomfort as 'best'. Australian adolescents rated very worried, sad or unhappy as 'worst', while Spanish adolescents, Spanish adults and Australian adults rated a lot of pain and discomfort as 'worst'.Conclusions: Results suggest preferences from adolescents using direct BWS are valid. Our descriptive analysis also suggest that there are age-related and country-specific differences in elicitation values for the EQ-5D-Y. [ABSTRACT FROM AUTHOR]

Introduction: Capturing the patient experience of living with a rare disease such as X-linked hypophosphataemia (XLH) is critical for a holistic understanding of the burden of a disease. The complexity of the disease coupled with the limited population makes elicitation of the patient burden methodologically challenging. This study used qualitative information direct from patient and caregiver statements to assess the burden of XLH.Methods: A thematic analysis was conducted on statements received during a National Institute for Health and Care Excellence (NICE) online public open consultation from 15 June to 6 July 2018. Researchers and clinical experts generated themes and codes based on expected aspects of XLH burden. Statements were independently coded by two reviewers, adding additional codes as required, and analysed by frequency and co-reporting across age groups.Results: The majority of responses were submitted from UK-based patients with some from the USA and Australia, and the statements related to children, adolescents and adults. The findings suggest that the greatest burden experienced by children is associated with conventional therapy, co-reported with dosing regimen, adherence, distress and pain. During adolescence, the burden becomes increasingly complex and multi-factorial, with an increasing psychological burden. In adults, conventional therapy co-reported with bone deformity and orthopaedic surgery, as well as pain, mobility, fatigue and dental problems, featured highly.Discussion: Whilst our study was opportunistic in nature, it has highlighted the clear and distinctive evolution of the burden of XLH, transitioning from being therapy-oriented in childhood to multi-factorial in adolescence, and finally to adulthood with its high impact on need for other interventions, function and mobility. This qualitative thematic analysis enhances the understanding of the symptom and treatment burden of XLH. [ABSTRACT FROM AUTHOR]

Purpose: Head-to-head comparison of reliability, validity and responsiveness of four patient-reported outcome measures (PROMS) suitable for assessing health-related quality of life (HRQOL) in palliative care settings: EORTC QLQ-C15-PAL, FACT-G7, FACIT-Pal and short-form FACIT-Pal-14.Methods: Secondary analysis of two phase III randomised trials: ketamine for chronic cancer pain, octreotide for vomiting in inoperable malignant bowel obstruction. Sub-groups were defined by Australia-modified Karnofsky performance status (AKPS) and participants' global impression of change (GIC). Two aspects of reliability were assessed: internal consistency (Cronbach alpha, α); test-retest reliability (intra-class correlation coefficient (ICC)) of patients with stable AKPS and those who self-reported 'no change' on GIC. Construct validity was assessed via pre-determined hypotheses about sensitivity of PROM scores to AKPS groups and responsiveness of PROM change scores to GIC groups using analysis of variance.Results: FACIT-Pal had better internal consistency (α ranged 0.59-0.80, 15/18 ≥ 0.70) than QLQ-C15-PAL (0.51-0.85, 4/8 ≥ 0.70) and FACT-G7 (0.54-0.64, 0/2 ≥ 0.70). FACIT scales had better test-retest reliability (FACIT-Pal 11/27 ICCs ≥ 0.70, FACT-G7 2/3 ICCs ≥ 0.70) than QLQ-C15-PAL (2/30 ICCs ≥ 0.70, 18/30 ≤ 0.5). Four scales demonstrated sensitivity to AKPS: QLQ-PAL-15 Physical Functioning and Global QOL, FACT-G Functional Wellbeing and FACIT-Pal Trial Outcome Index (TOI). Nine scales demonstrated responsiveness: three in the ketamine trial population (QLQ-C15-PAL Pain, FACIT-Pal-14, FACT-G7), six in the octreotide trial population (QLQ-C15-PAL Fatigue; FACIT-Pal PalCare, TOI, Total; FACT-G Physical Wellbeing and Total).Conclusions: No PROM was clearly superior, confirming that choosing the best PROM requires careful consideration of the research goals, patient population and the domains of HRQOL targeted by the intervention being investigated. [ABSTRACT FROM AUTHOR]

Background: Mapping algorithms have been indicated as a second-best solution for estimating health state utilities for the calculation of quality-adjusted life-years within cost-utility analysis when no generic preference-based measure is incorporated into the study. However, the predictive performance of these algorithms may be variable and hence it is important to assess their external validity before application in different settings.Objective: The aim of this study was to assess the external validity and generalisability of existing mapping algorithms for predicting preference-based Child Health Utility 9D (CHU9D) utilities from non-preference-based Pediatric Quality of Life Inventory (PedsQL) scores among children and adolescents living with or without disabilities or health conditions.Methods: Five existing mapping algorithms, three developed using data from an Australian community population and two using data from a UK population with one or more self-reported health conditions, were externally validated on data from the Longitudinal Study of Australian Children (n = 6623). The predictive accuracy of each mapping algorithm was assessed using the mean absolute error (MAE) and the mean squared error (MSE).Results: Values for the MAE (0.0741-0.2302) for all validations were within the range of published estimates. In general, across all ages, the algorithms amongst children and adolescents with disabilities/health conditions (Australia MAE: 0.2085-0.2302; UK MAE: 0.0854-0.1162) performed worse relative to those amongst children and adolescents without disabilities/health conditions (Australia MAE: 0.1424-0.1645; UK MAE: 0.0741-0.0931).Conclusions: The published mapping algorithms have acceptable predictive accuracy as measured by MAE and MSE. The findings of this study indicate that the choice of the most appropriate mapping algorithm to apply may vary according to the population under consideration. [ABSTRACT FROM AUTHOR]

Purpose: This study examined the mediating effects of cancer type, treatment, and distress on health-related quality of life (HRQoL) for early diagnosis cancer patients. Results were interpreted with respect to established thresholds for clinical meaningfulness.Methods: A cross-sectional design was used. Patients completed surveys collecting demographics, cancer type, treatment, comorbid conditions, distress (HADS), and HRQoL (FACT-G). Hierarchical multivariate regressions examined associations between cancer type, treatment, and distress on HRQoL. Established minimum differences were used to identify clinically meaningful changes in HRQoL.Results: Of the 1183 patients surveyed, 21% were classified as having elevated anxiety and 13% had elevated depression. Our sample reported significantly lower physical and emotional well-being compared to population norms. Patients with prostate, melanoma, gynaecological, and urological cancers had higher HRQoL scores than those with colorectal cancer. However, when effects for treatment type and distress were considered, differences between cancer types became non-significant. Anxiety and depression were associated with lower HRQoL scores as was chemotherapy. Only depression, anxiety, and chemotherapy were associated with clinically meaningful decreases in HRQoL scores.Conclusions: While statistically significant differences in HRQoL were found between different cancer types, only chemotherapy, anxiety, and depression produced clinically meaningful poorer HRQoL scores. In practice, clinically meaningful differences could promote a shift in resources toward interventions where a positive effect on patient well-being is appreciated by both the patient and health professional. [ABSTRACT FROM AUTHOR]

Purpose: To explore the relationship between sociodemographic and lifestyle variables with health-related quality of life (HRQoL) of a large cohort of 'healthy' older individuals.Methods: The sample included individuals aged 65+ years from Australia (N = 16,703) and the USA (N = 2411) enrolled in the ASPirin in Reducing Events in the Elderly (ASPREE) multicentre placebo-controlled trial study and free of cardiovascular disease, dementia, serious physical disabilities or 'fatal' illnesses. The associations with the physical (PCS) and mental component scores (MCS) of HRQoL (SF-12 questionnaire) were explored using multiple linear regression models from data collected at baseline (2010-2014).Results: The adjusted PCS mean was slightly higher in the USA (49.5 ± 9.1) than Australia (48.2 ± 11.6; p < 0.001), but MCS was similar in both samples (55.7 ± 7.5 and 55.7 ± 9.6, respectively; p = 0.603). Males, younger participants, better educated, more active individuals, or those currently drinking 1-2 alcoholic drinks/day showed a better HRQoL (results more evident for PCS than MCS), while current heavy smokers had the lowest physical HRQoL in both countries. Neither age, walking time, nor alcohol intake was associated with MCS in either cohort.Conclusions: Baseline HRQoL of ASPREE participants was higher than that reported in population-based studies of older individuals, but the associations between sociodemographic and lifestyle variables were consistent with the published literature. As the cohort ages and develops chronic diseases, ASPREE will be able to document HRQoL changes. [ABSTRACT FROM AUTHOR]

Sexual esteem is the positive regard for and confidence in an individual's capacity to experience their sexuality in a satisfying and enjoyable way. Body esteem is the overall positive or negative evaluation of one's body. Physical disability can have an adverse impact on both of these constructs. This project aimed to study the sexual esteem and body esteem in people with spinal cord damage (SCD). A comprehensive survey (August 2013-June 2014) was conducted of people with SCD (n = 154) living in the community, Australia. The survey included the Physical Disability Sexual and Body Esteem (PDSBE) scale. There were 146 participants who completed the PDSBE scale. Most were male (n = 100, 68.5%), average age of 47.9 years (SD = 13.5) and a median of 11 years (IQR 4-20) post SCD. The mean PDSBE score was 22.2 (SD = 7.9). There was a moderate correlation (r = 0.35) between the total PDSBE score and quality of life as a whole (P = .001) and a weak correlation (r = 0.22) with function (P = 0.01). There was no significant influence of gender or sexual orientation on PDSBE scores. However, people with non-traumatic SCD and paraplegia tended to have higher scores (non-traumatic SCD mean 25.8 [SD = 6.7] vs traumatic SCD mean 21.0 [SD = 8.0], P = .002; paraplegia mean 23.4 [8.1] vs tetraplegia mean 20.6 [7.5], P = 0.04). The mean PDSBE scores for the people with SCD in this study were lower than that reported for non-SCD disabled (mean 25.9, SD = 9.2). Sexual and body esteem are psychological-sexual constructs that complement existing outcomes used when evaluating the impact of SCD. [ABSTRACT FROM AUTHOR]

Background: Disease management programmes may improve quality of care, improve health outcomes and potentially reduce total healthcare costs. To date, only one very large population-based study has been undertaken and indicated reductions in hospital admissions > 10%.Objective: We sought to confirm the effectiveness of population-based disease management programmes. The objective of this study was to evaluate the relative impact on healthcare utilisation and cost of participants the Costs to Australian Private Insurance - Coaching Health (CAPICHe) trial.Design: Parallel-group randomised controlled trial, intention-to-treat analysis SETTING: Australian population PARTICIPANTS: Forty-four thousand four hundred eighteen individuals (18-90 years of age) with private health insurance and diagnosis of heart failure, chronic obstructive pulmonary disease (COPD), coronary artery disease (CAD), diabetes, or low back pain, with predicted high cost claims for the following 12 months.Intervention: Health coaching for disease management from Bupa Health Dialog, vs Usual Care.Main Outcome Measures: Total cost of claims per member to the private health insurer 1 year post-randomisation for hospital admissions, including same-day, medical and prostheses hospital claims, excluding any maternity costs. Analysis was based on the intent-to-treat population.Results: Estimated total cost 1 year post-randomisation was not significantly different (means: intervention group A$4934; 95% CI A$4823-A$5045 vs control group A$4868; 95% CI A$4680-A$5058; p = 0.524). However, the intervention group had significantly lower same-day admission costs (A$468; 95% CI A$454-A$482 vs A$508; 95% CI A$484-A$533; p = 0.002) and fewer same-day admissions per 1000 person-years (intervention group, 530; 95% CI 508-552 vs control group, 614; 95% CI 571-657; p = 0.002). Subgroup analyses indicated that the intervention group had significantly fewer admissions for patients with COPD and fewer same-day admissions for patients with diabetes.Conclusions: Chronic disease health coaching was not effective to reduce the total cost after 12 months of follow-up for higher risk individuals with a chronic condition. Statistically significant changes were found with fewer same-day admissions; however, these did not translate into cost savings from a private health insurance perspective. [ABSTRACT FROM AUTHOR]

Background: Assessing health-related quality of life (HRQOL) in people with advanced dementia is challenging but important for informed decision-making. Proxy measurement of this construct is difficult and is often rated lower than self-report. Accurate proxy rating of quality of life in dementia is related to identification of concepts important to the person themselves, as well as the sensitivity of the measures used. The main aim of this study was to compare the performance of two instruments-QUALID and EQ-5D-5L-on measuring HRQOL in people with advanced dementia.Methods: In a sub-study nested within a cluster-RCT we collected proxy(nurse)-completed EQ-5D-5L and QUALID measures at baseline, 3, 6, 9 and 12 months' follow-up for people with advanced dementia, residing in 20 nursing homes across Australia. Spearman's rank correlations, partial correlations and linear regressions were used to assess the relationship between the HRQOL instrument scores and their changes over time.Results: The mean weight from 284 people for the EQ-5D-5L and QUALID at baseline were 0.004 (95% CI - 0.026, 0.033) and 24.98 (95% CI 24.13, 25.82), respectively. At 12 months' follow-up, 115 participants remained alive. EQ-5D-5L weights and QUALID scores at baseline and at follow-up were moderately correlated (r = - 0.437; p < 0.001 at 12 months). Changes within QUALID and EQ-5D-5L across the same follow-up periods were also correlated (r = - 0.266; p = 0.005). The regression analyses support these findings.Conclusion: Whilst these quality of life instruments demonstrated moderate correlation, the EQ-5D-5L does not appear to capture all aspects of quality of life that are relevant to people with advanced dementia and we cannot recommend the use of this instrument for use within this population. The QUALID appears to be a more suitable instrument for measuring HRQOL in people with severe dementia, but is not preference-based, which limits its application in economic evaluations of dementia care. [ABSTRACT FROM AUTHOR]

Purpose: High prevalence mental disorders including depression, anxiety and substance use disorders are associated with high economic and disease burden. However, there is little information regarding the health state utility values of such disorders according to their clinical severity using comparable instruments across all disorders. This study reports utility values for high prevalence mental disorders using data from the 2007 Australian National Survey of Mental Health and Wellbeing (NSMHWB).Methods: Utility values were derived from the AQoL-4D and analysed by disorder classification (affective only (AD), anxiety-related only (ANX), substance use only (SUB) plus four comorbidity groups), severity level (mild, moderate, severe), symptom recency (reported in the past 30 days), and comorbidity (combination of disorders). The adjusted Wald test was applied to detect statistically significant differences of weighted means and the magnitude of difference between groups was presented as a modified Cohen's d.Results: In total, 1526 individuals met criteria for a 12-month mental disorder. The mean utility value was 0.67 (SD = 0.27), with lower utility values associated with higher severity levels and some comorbidities. Utility values for AD, ANX and SUB were 0.64 (SD = 0.25), 0.71 (SD = 0.25) and 0.81 (SD = 0.19), respectively. No differences in utility values were observed between disorders within disorder groups. Utility values were significantly lower among people with recent symptoms (within past 30 days) than those without; when examined by diagnostic group, this pattern held for people with SUB, but not for people with ANX or AD.Conclusions: Health state utility values of people with high prevalence mental disorders differ significantly by severity level, number of mental health comorbidities and the recency of symptoms, which provide new insights on the burden associated with high prevalence mental disorders in Australia. The derived utility values can be used to populate future economic models. [ABSTRACT FROM AUTHOR]

Vaginal birth may result in damage to the levator ani muscle (LAM) with subsequent pelvic floor dysfunction and there may be accompanying psychological problems. This study examines associations between these somatic injuries and psychological symptoms. A qualitative study using semi-structured interviews to examine the experiences of primiparous women (n = 40) with known LAM trauma was undertaken. Participants were identified from a population of 504 women retrospectively assessed by a perinatal imaging study at two obstetric units in Sydney, Australia. LAM avulsion was diagnosed by 3D/4D translabial ultrasound 3-6 months postpartum. The template consisted of open-ended questions. Main outcome measures were quality of information provided antenatally; intrapartum events; postpartum symptoms; and coping mechanisms. Thematic analysis of maternal experiences was employed to evaluate prevalence of themes. Ten statement categories were identified: (1) limited antenatal education (29/40); (2) no information provided on potential morbidities (36/40); (3) conflicting advice (35/40); (4) traumatized partners (21/40); (5) long-term sexual dysfunction/relationship issues (27/40); (6) no postnatal assessment of injuries (36/40); (7) multiple symptoms of pelvic floor dysfunction (35/40); (8) “putting up” with injuries (36/40); (9) symptoms of post-traumatic stress disorder (PTSD) (27/40); (10) dismissive staff responses (26/40). Women who sustain LAM damage after vaginal birth have reduced quality of life due to psychological and somatic morbidities. PTSD symptoms are common. Clinicians may be unaware of the severity of this damage. Women report they feel traumatized and abandoned because such morbidities were not discussed prior to birth or postpartum. [ABSTRACT FROM AUTHOR]

Purpose: We examine timing of motherhood in a longitudinal cohort of young Australian women, and its relationship with mental health-related quality of life (SF-36 MHI-5), and with sociodemographic, health behaviour and health-related variables.Methods: We analysed longitudinal self-report data from a nationally representative cohort of 10,332 Australian women born 1973-1978, surveyed 6 times between 1996 (aged 18-23) and 2012 (aged 34-39).Results: Group-based trajectory modelling identified four groups. Normative Mothers (46%, mean age at motherhood 30.5 years) made the transition to motherhood close to the Australian median age. Early Mothers (25%, 25.2 years) and Very Early Mothers (7%, 20.0 years) made this transition earlier; Not Mothers (22%) had not given birth. Generalised linear mixed models showed that all groups improved mean MHI-5 scores over time. Patterns of group differences were complex: Normative and Early Mothers scored consistently highest; Very Early Mothers scored lowest at most surveys; Not Mothers' scores increased relative to others over time. Most effects disappeared after adjustment for confounders. Early and Very Early Mothers showed multiple indicators of social disadvantage, while Not Mothers had very low rates of marriage.Conclusions: Timing of motherhood is embedded in sociodemographic and personal contexts. Women with socioeconomic advantages were characterised by higher mental health-related quality of life and later transition to motherhood, but adjustment for relative advantage attenuated differences in mental health-related quality of life. The overall findings suggest a pattern of positive adaptation to circumstances, with mental health-related quality of life improving through early adulthood regardless of timing of motherhood. [ABSTRACT FROM AUTHOR]

Background: Spending on new healthcare technologies increases net population health when the benefits of a new technology are greater than their opportunity costs-the benefits of the best alternative use of the additional resources required to fund a new technology.Objective: The objective of this study was to estimate the expected incremental cost per quality-adjusted life-year (QALY) gained of increased government health expenditure as an empirical estimate of the average opportunity costs of decisions to fund new health technologies. The estimated incremental cost-effectiveness ratio (ICER) is proposed as a reference ICER to inform value-based decision making in Australia.Methods: Empirical top-down approaches were used to estimate the QALY effects of government health expenditure with respect to reduced mortality and morbidity. Instrumental variable two-stage least-squares regression was used to estimate the elasticity of mortality-related QALY losses to a marginal change in government health expenditure. Regression analysis of longitudinal survey data representative of the general population was used to isolate the effects of increased government health expenditure on morbidity-related, QALY gains. Clinical judgement informed the duration of health-related quality-of-life improvement from the annual increase in government health expenditure.Results: The base-case reference ICER was estimated at AUD28,033 per QALY gained. Parametric uncertainty associated with the estimation of mortality- and morbidity-related QALYs generated a 95% confidence interval AUD20,758-37,667.Conclusion: Recent public summary documents suggest new technologies with ICERs above AUD40,000 per QALY gained are recommended for public funding. The empirical reference ICER reported in this article suggests more QALYs could be gained if resources were allocated to other forms of health spending. [ABSTRACT FROM AUTHOR]

Background: The EORTC QLU-C10D is a new multi-attribute utility instrument derived from the widely used cancer-specific quality-of-life (QOL) questionnaire, EORTC QLQ-C30. The QLU-C10D contains ten dimensions (Physical, Role, Social and Emotional Functioning; Pain, Fatigue, Sleep, Appetite, Nausea, Bowel Problems), each with four levels. To be used in cost-utility analysis, country-specific valuation sets are required.Objective: The aim of this study was to provide Australian utility weights for the QLU-C10D.Methods: An Australian online panel was quota-sampled to ensure population representativeness by sex and age (≥ 18 years). Participants completed a discrete choice experiment (DCE) consisting of 16 choice-pairs. Each pair comprised two QLU-C10D health states plus life expectancy. Data were analysed using conditional logistic regression, parameterised to fit the quality-adjusted life-year framework. Utility weights were calculated as the ratio of each QOL dimension-level coefficient to the coefficient on life expectancy.Results: A total of 1979 panel members opted in, 1904 (96%) completed at least one choice-pair, and 1846 (93%) completed all 16 choice-pairs. Dimension weights were generally monotonic: poorer levels within each dimension were generally associated with greater utility decrements. The dimensions that impacted most on choice were, in order, Physical Functioning, Pain, Role Functioning and Emotional Functioning. Oncology-relevant dimensions with moderate impact were Nausea and Bowel Problems. Fatigue, Trouble Sleeping and Appetite had relatively small impact. The value of the worst health state was -0.096, somewhat worse than death.Conclusions: This study provides the first country-specific value set for the QLU-C10D, which can facilitate cost-utility analyses when applied to data collected with the EORTC QLQ-C30, prospectively and retrospectively. [ABSTRACT FROM AUTHOR]

Purpose: To investigate associations between aspects of time use and health-related quality of life (HRQoL) in youth.Methods: 239 obese and healthy-weight 10- to 13-year-old Australian children completed the Pediatric Quality of Life Inventory (PedsQL™) quantifying their health-related quality of life. Time use was evaluated over four days using the Multimedia Activity Recall for Children and Adolescents (MARCA), a validated 24 h recall tool. The average number of minutes/day spent in physical activity (divided into sport, active transport and play), screen time (divided into television, videogames and computer use), and sleep were calculated. Percent fat was measured using dual-energy X-ray absorptiometry, Tanner stage by self-report, and household income by parental report. Sex-stratified analysis was conducted using Partial Least Squares regression, with percent fat, Tanner stage, household income, and use-of-time as the independent variables, and PedsQL™ total, physical and psychosocial subscale scores as the dependent variables.Results: For boys, the most important predictors of HRQoL were percent fat (negative), videogames (negative), sport (positive), and Tanner stage (negative). For girls, the significant predictors were percent fat (negative), television (negative), sport (positive), active transport (negative), and household income (positive).Conclusion: While body fat was the most significant correlate of HRQoL, sport was independently associated with better HRQoL, and television and videogames with poorer HRQoL. Thus, parents and clinicians should be mindful that not all physical activity and screen-based behaviours have equivocal relationships with children's HRQoL. Prospective research is needed to confirm causation and to inform current activity guidelines. [ABSTRACT FROM AUTHOR]