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Background: The residual effects of cancer and its treatment can profoundly affect women's quality of life. This paper presents results from a multisite randomized controlled trial that evaluated the clinical benefits of an e-health enabled health promotion intervention (the Women's Wellness after Cancer Program or WWACP) on the health-related quality of life of women recovering from cancer treatment.Methods: Overall, 351 women previously treated for breast, blood or gynaecological cancers were randomly allocated to the intervention (WWACP) or usual care arms. The WWACP comprised a structured 12-week program that included online coaching and an interactive iBook that targeted physical activity, healthy diet, stress and menopause management, sexual wellbeing, smoking cessation, alcohol intake and sleep hygiene. Data were collected via a self-completed electronic survey at baseline (t0), 12 weeks (post-intervention, t1) and 24 weeks (to assess sustained behaviour change, t2). The primary outcome, health-related quality of life (HRQoL), was measured using the Short Form Health Survey (SF-36).Results: Following the 12-week lifestyle program, intervention group participants reported statistically significant improvements in general health, bodily pain, vitality, and global physical and mental health scores. Improvements were also noted in the control group across several HRQoL domains, though the magnitude of change was less.Conclusions: The WWACP was associated with improved HRQoL in women previously treated for blood, breast, and gynaecological cancers. Given how the synergy of different lifestyle factors influence health behaviour, interventions accounting for the reciprocity of multiple health behaviours like the WWACP, have real potential for immediate and sustainable change.Trial Registration: The protocol for this randomised controlled trial was submitted to the Australian and New Zealand Clinical Trials Registry on 15/07/2014 and approved on 28/07/2014 ( ACTRN12614000800628 ). [ABSTRACT FROM AUTHOR]

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Objective: Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals.Methods: Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work.Results: Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals.Conclusions: The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals. [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]

Background: Employment status and working conditions are strong determinants of male health, and are therefore an important focus in the Australian Longitudinal Study on Male Health (Ten to Men). In this paper, we describe key work variables included in Ten to Men, and present analyses relating psychosocial job quality to mental health and subjective wellbeing at baseline.Methods: A national sample of males aged 10 to 55 years residing in private dwellings was drawn using a stratified multi-stage cluster random sample design. Data were collected between October 2013 and July 2014 for a cohort of 15,988 males, representing a response fraction of 35 %. This analysis was restricted to 18-55 year old working age participants (n = 13,456). Work-related measures included employment status, and, for those who were employed, a number of working conditions including an ordinal scale of psychosocial job quality (presence of low job control, high demand and complexity, high job insecurity, and low fairness of pay), and working time-related stressors such as long working hours and night shift work. Associations between psychosocial job quality and two outcome measures, mental ill-health and subjective wellbeing, were assessed using multiple linear regression.Results: The majority of participants aged 18-55 years were employed at baseline (85.6 %), with 8.4 % unemployed and looking for work, and 6.1 % not in the labour force. Among employed participants, there was a high prevalence of long working hours (49.9 % reported working more than 40 h/week) and night shift work (23.4 %). Psychosocial job quality (exposure to 0/1/2/3+ job stressors) prevalence was 36 %/ 37 %/ 20 %/ and 7 % of the working respondents. There was a dose-response relationship between psychosocial job quality and each of the two outcome measures of mental health and subjective wellbeing after adjusting for potential confounders, with higher magnitude associations between psychosocial job quality and subjective wellbeing.Conclusions: These results extend the study of psychosocial job quality to demonstrate associations with a global measure of subjective wellbeing. Ten to Men represents a valuable new resource for the longitudinal and life course study of work and health in the Australian male population. [ABSTRACT FROM AUTHOR]

Background: Waiting lists for treatment are common in outpatient and community services, Existing methods for managing access and triage to these services can lead to inequities in service delivery, inefficiencies and divert resources from frontline care. Evidence from two controlled studies indicates that an alternative to the traditional "waitlist and triage" model known as STAT (Specific Timely Appointments for Triage) may be successful in reducing waiting times without adversely affecting other aspects of patient care. This trial aims to test whether the model is cost effective in reducing waiting time across multiple services, and to measure the impact on service provision, health-related quality of life and patient satisfaction.Methods/design: A stepped wedge cluster randomised controlled trial has been designed to evaluate the impact of the STAT model in 8 community health and outpatient services. The primary outcome will be waiting time from referral to first appointment. Secondary outcomes will be nature and quantity of service received (collected from all patients attending the service during the study period and health-related quality of life (AQOL-8D), patient satisfaction, health care utilisation and cost data (collected from a subgroup of patients at initial assessment and after 12 weeks). Data will be analysed with a multiple multi-level random-effects regression model that allows for cluster effects. An economic evaluation will be undertaken alongside the clinical trial.Discussion: This paper outlines the study protocol for a fully powered prospective stepped wedge cluster randomised controlled trial (SWCRCT) to establish whether the STAT model of access and triage can reduce waiting times applied across multiple settings, without increasing health service costs or adversely impacting on other aspects of patient care. If successful, it will provide evidence for the effectiveness of a practical model of access that can substantially reduce waiting time for outpatient and community services with subsequent benefits for both efficiency of health systems and patient care.Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615001016527 . Approved 15/9/2015. [ABSTRACT FROM AUTHOR]

Background: Minimally adequate treatment (MAT) is intended to represent treatment minimally sufficient for common mental health problems. For children, MAT has been defined over a twelve-month period as either eight or more mental health visits, or four to seven visits plus relevant medication. MAT is used to identify those missing out on adequate care, but it is unknown whether MAT improves children's outcomes.Methods: This paper examines whether MAT is associated with improved outcomes for children. It uses survey data from the nationally representative Longitudinal Study of Australian children on 596 children with mental health problems based on the Strengths and Difficulties Questionnaire at ages 8-15 years, linked to health service administrative data from 2012 to 2016. Statistical analysis examines the association of MAT with later quality of life (Pediatric Quality of Life Inventory), using a lagged dependent variable model to account for time-varying unobserved confounding.Results: Compared to children with lower levels of treatment, those who received MAT between baseline and follow up had no statistically significant improvement in either quality of life or mental health symptoms.Limitations: The observational data provide insight into real-world practice but require statistical methods to account for selection into treatment.Conclusions: While clinical trials show mental health treatments can be efficacious, this study shows no evidence that children receiving MAT in routine practice have better outcomes. These findings demonstrate the need for better understanding of the nature and impact of children's mental health care as it is delivered and received in routine practice. [ABSTRACT FROM AUTHOR]

Background: The utilisation of massed therapy for treating posttraumatic stress disorder (PTSD) is gaining strength, especially prolonged exposure. However, it is unknown whether massed prolonged exposure (MPE) is non-inferior to standard prolonged exposure (SPE) protocols in the long term. The current study aimed to assess whether MPE was non-inferior to SPE at 12 months post-treatment, and to ascertain changes in secondary measure outcomes. Methods: A multi-site non-inferiority randomised controlled trial (RCT) compared SPE with MPE in 12 clinics. The primary outcome was PTSD symptom severity (CAPS-5) at 12 months post-treatment commencement. Secondary outcome measures included symptoms of depression, anxiety, anger, disability, and quality of life at 12 weeks and 12 months post-treatment commencement. Outcome assessors were blinded to treatment allocation. The intention-to-treat sample included 138 Australian military members and veterans and data were analysed for 134 participants (SPE = 71, MPE = 63). Results: Reductions in PTSD severity were maintained at 12 months and MPE remained non-inferior to SPE. Both treatment groups experienced a reduction in depression, anxiety, anger, and improvements in quality of life at 12 weeks and 12 months post-treatment commencement. Treatment effects for self-reported disability in the SPE group at 12 weeks were not maintained, with neither group registering significant effects at 12 months. Conclusions: The emergence of massed protocols for PTSD is an important advancement. The current study provides RCT evidence for the longevity of MPE treatment gains at 12 months post-treatment commencement and demonstrated non-inferiority to SPE. Promisingly, both treatments also significantly reduced the severity of comorbid symptoms commonly occurring alongside PTSD. [ABSTRACT FROM AUTHOR]

Background: Childhood obesity is a serious public health concern worldwide. Community-based obesity prevention interventions offer promise due to their focus on the broader social, cultural and environmental contexts rather than individual behaviour change and their potential for sustainability and scalability. This paper aims to determine the effectiveness of a South Australian community-based, multi-setting, multi-strategy intervention, OPAL (Obesity Prevention and Lifestyle), in increasing healthy weight prevalence in 9 to 11-year-olds.Methods: A quasi-experimental repeated cross-sectional design was employed. This paper reports on the anthropometric, health-related quality of life (HRQoL) and behaviour outcomes of primary school children (9-11 years) after 2-3 years of intervention delivery. Consenting children from primary schools (20 intervention communities, INT; 20 matched comparison communities, COMP) completed self-report questionnaires on diet, activity and screen time behaviours. HRQoL was measured using the Child Health Utility 9D. Body Mass Index (BMI) z-score and weight status were determined from children's measured height and weight. A multilevel mixed-effects model, accounting for clustering in schools, was implemented to determine intervention effect. Sequential Bonferroni adjustment was used to allow for multiple comparisons of the secondary outcomes.Results: At baseline and final, respectively, 2611 and 1873 children completed questionnaires and 2353 and 1760 had anthropometric measures taken. The prevalence of children with healthy weight did not significantly change over time in INT (OR 1.11, 95%CI 0.92-1.35, p = 0.27) or COMP (OR 0.85, 95%CI 0.68-1.06, p = 0.14). Although changes in the likelihood of obesity, BMI z-score and HRQoL favoured the INT group, the differences were not significant after Bonferroni adjustment. There were also no significant differences between groups at final for behavioural outcomes.Conclusions: OPAL did not have a significant impact on the proportion of 9 to 11-year-olds in the healthy weight range, nor children's BMI z-score, HRQoL and behaviours. Long-term, flexible community-based program evaluation approaches are required .Trial Registration: ACTRN12616000477426 (12th April 2016, retrospectively registered). [ABSTRACT FROM AUTHOR]

Introduction: The global nursing workforce is predominantly female, with a large proportion working in the 45–55 age group. Menopause is a transition for all women, and; therefore needs recognition as it can impact work performance and consequently staff turnover. Background: Women will go through the menopause, but not all women are affected. The menopause transition presents a range of signs and symptoms both physical and psychological which can impact the quality of life and individuals' work/life balance. The nursing workforce is predominantly women that will work through the menopause transition. Objectives: The study explored perspectives on digital health interventions as strategies to support menopausal women and to understand the requirements for designing health interventions for support in the workplace. Design: A qualitative explorative design. Settings: Nurses working in a range of clinical settings in England, Finland, Denmark, New Zealand, Australia and USA. Methods: Nurses (n = 48) participated in focus groups from six different countries from February 2020–June 2022 during the pandemic from a range of acute, primary care and education settings. Nurses were invited to participate to share their experiences. Thematic analysis was used. Results: All participants were able to describe the physical symptoms of menopause, with some cultural and possible hemisphere differences; more noticeable was the psychological burden of menopause and fatigue that is not always recognized. Four themes were identified: Managing symptoms in the workplace; Recognition in the workplace; Menopause interventions; and Expectation versus the invisible reality. These themes revealed information that can be translated for implementation into digital health interventions. Conclusions: Managers of nursing female staff in the menopausal age range need greater awareness, and menopause education should involve everyone. Finally, our results demonstrate design attributes suitable for inclusion in digital health strategies that are aligned with likely alleviation of some of the discomforts of menopause. Patient or public contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Introduction and Aims: The Australian Treatment Outcomes Profile (ATOP) is a brief instrument that assesses a range of substance use, health and well-being measures over the past 28 days. Previously, it has been validated in general adult Australian alcohol and other drug (AOD) treatment populations. However, the increasing number of older-aged clients attending AOD treatment warrants the instrument to be validated for this population. The aim of this study was to validate the ATOP for use in older AOD populations, by comparing it with validated 'gold standard' measures used in older populations.Design and Methods: A convenience sample of 99 participants aged ≥50 attending specialist AOD services in Sydney, Australia were administered the ATOP by a researcher, along with alcohol use (AUDIT) and health questionnaires [Physical Health Questionnaire-15, 12-item short-form Health Survey (SF-12) and Geriatric Depression Scale].Results: The ATOP items had strong agreement with the comparison instruments. The highest correlation was between the 28 days alcohol use and the AUDIT. ATOP psychological health scores highly correlated with the SF-12 mental health subscale and the Geriatric Depression Scale, and ATOP physical health scores significantly correlated with the SF-12 physical health subscale and the Physical Health Questionnaire-15. The ATOP Quality of Life score significantly correlated with all health measures. Discussion and Conclusions The ATOP has good concurrent validity with other validated substance use and health measures in an older population. Comparison with general older populations demonstrated the poorer health of this group of older AOD clients in particular.[Lintzeris N, Monds L A, Rivas G, Leung S, Withall A, Draper B. The Australian Treatment Outcomes Profile instrument as a clinical tool for older alcohol and other drug clients: A validation study. Drug Alcohol Rev 2016;35:673-677]. [ABSTRACT FROM AUTHOR]

Background: Adequate dietary protein intake is recommended for older adults to optimise muscle health and function, and support recovery from illness, however, its effect on health-related quality of life (HRQoL) is unclear. The aim of this study was to examine the association between total protein intake and different sources of dietary protein and HRQoL in Australians aged 60 years and older over a 12-year period.Methods: This study used data from the Australian Diabetes, Obesity and Lifestyle study (AusDiab), a 12-year population-based prospective study. The sample included 752 (386 females) adults aged 60 years and older. Protein intake was estimated at baseline (1999/2000) from a 74-item Food Frequency Questionnaire, and HRQoL using the 36-item Short-form Health Survey assessed at baseline (1999/2000) and after 12 years (2011/12). The association between protein intake and change in HRQoL was evaluated using multivariate regression analysis adjusted for relevant confounders. The difference in change in HRQoL between participants with total protein intakes of < 1.0 g/kg/day, intakes of between 1.0-1.2 g/kg/day and intakes of > 1.2 g/kg/day were assessed using one-way ANCOVA.Results: Total protein intake at baseline was not associated with 12-year changes in physical component summary (PCS) or mental component summary (MCS) scores of HRQoL. Higher animal, red meat and processed animal protein intakes were associated with deteriorations in PCS scores after adjusting for relevant confounders (β = - 0.04; 95% CI: - 0.07, -0.01 ; p = 0.009; β = - 0.05; 95% CI: - 0.08, - 0.01; p = 0.018; β = - 0.17; 95% CI: - 0.31, - 0.02; p = 0.027 respectively). Higher red meat protein intake was associated with deteriorations in MCS scores after adjusting for relevant confounders (β = - 0.04; 95% CI: - 0.08, - 0.01; p = 0.011). There was no difference in 12-year changes in PCS or MCS between participants consuming total protein of < 1.0 g/kg/day, 1.0-1.2 g/kg/day and intakes of > 1.2 g/kg/day.Conclusion: There was no relationship between total dietary protein intake and HRQoL, but higher protein intakes from animal, red meat and processed animal sources were associated with a deterioration in HRQoL scores over 12 years. Due to the number of associations examined and high drop out of older less healthy participants, further research is required to confirm the associations detected in healthy and less healthy participants, with a view to making protein intake recommendations for older adults. [ABSTRACT FROM AUTHOR]

Background: To estimate the short term (5 years) and long term (30 years) economic burden of stroke among younger adults (18-64 years), and to calculate the loss of health-related quality of life in these individuals, in Australia.Methods: A Markov microsimulation model was built to simulate incidence of stroke among younger adults in Australia. Younger adults with stroke commenced in the model via health states defined by the modified Rankin Scale at 12 months from the AVERT study (A Very Early Rehabilitation Trial), and transitioned through these health states. Costs in Australian dollars (AUD) were measured from a societal perspective for a 2018 reference year and categorised into medical, non-medical and indirect costs. Probabilistic sensitivity analyses were performed to test the robustness around the cost of illness estimates. The loss of health-related quality of life due to stroke among younger adults was calculated by determining the difference in estimated quality-adjusted life years (QALYs) between the stroke population and the general population. This was determined by multiplying the predicted remaining life years for the modelled stroke cohort and the age-matched general population, by their corresponding age-dependent utilities.Results: The economic burden of stroke among younger adults was estimated to be AUD2.0 billion over 5 years, corresponding to a mean of $149,180 per stroke patient. Over 30 years, the economic impact was AUD3.4 billion, equating to a mean of $249,780 per case. Probabilistic sensitivity analyses revealed a mean cost per patient of $153,410 in the short term, and a mean cost per patient of $273,496 in the long term. Compared to the age-matched general population, younger adults with stroke experienced a loss of 4.58 life years and 9.21 QALYs.Conclusions: The results of our study suggests high economic and health burden of stroke among younger adults and highlights the need for preventive interventions targeting this age group.Trial Registration: ACTRN12606000185561 , retrospectively registered. [ABSTRACT FROM AUTHOR]

Background: Serious injuries and fatalities among vulnerable road users on two wheeled motorised vehicles have increased across Australia and internationally in the past decade yet fallen for motor vehicle occupants. Almost half of all reported motorcycle injury crashes cause serious injury or death, nearly double that of motor vehicle police-reported crashes. This study explores associations with sociodemographic and pre-injury health characteristics and health outcomes after a road traffic injury; aiming to compare motorcyclists with other road users and inform recovery care.Methods: An inception cohort study recruited 1854 individuals aged > 17 years, injured following land-transport crashes in New South Wales, Australia (July 2013-November 2016). Interviews conducted at baseline, 6-and 12-months post-injury elicited demographic, socioeconomic, and self-reported health conditions.Results: Primary analysis involved 1854 participants who were recruited at baseline as three distinct road user groups; 628 (33.9%) motorcyclists, 927 (50%) vehicle occupants and 299 (16.1%) bicyclists. At baseline, injury patterns differed significantly between road user groups; motorcyclists were more than twice as likely to sustain lower extremity injury (p < 0.001); to have more severe injury severity scores (p < 0.001) and longer hospital stays versus vs vehicle occupants and bicyclists (< 0.001) across these measures. Injured motorcyclists were predominantly male (88.1%, p < 0.001), were younger on average (38 years) than bicyclists (41.5 years), had lower income and education levels, and poorer pre-injury physical health than other road user groups. Despite these differences, at 12 months post-injury motorcyclists had better physical health (SF12-PCS 2.07 (0.77, 3.36), p = 0.002) and reported lower pain scores (- 0.51 (- 0.83, - 0.2), p < 0.001) than vehicle occupants. Motorcyclists displayed less evidence of psychological distress than vehicle occupants, but more than bicyclists across several measures used.Conclusions: Road user types differ in important characteristics, including pre-injury health status and recovery after injury. As vulnerable road users experiencing transport crash and considering their higher initial injury severity, the degree of recovery among motorcyclists compared with other user types is remarkable and unexplained. Health and recovery outcomes after land-transport crashes is least favourable among vehicle occupants despite their higher levels of protection in a crash. This information is valuable for targeting early intervention strategies by road user type during the post-crash care phase, to improve long-term recovery. [ABSTRACT FROM AUTHOR]

Aim: To examine associations between patterns of language use and early adolescent well-being.Methods: Participants were 1763 Australian 11- to 12-year-olds in the Child Health CheckPoint. Six patterns of language use were identified from a writing activity using Linguistic Inquiry and Word Count and factor analysis: Acting in the present and future, Positive emotion, Gender and relationships, Self-aware, Inquisitive and time focused, and Confident. Well-being measures represented a spectrum from negatively to positively framed psychosocial health. Associations between language use and well-being were estimated using linear regression adjusted for age, sex and social disadvantage.Results: Positive emotion (high emotional tone, positive emotion) was associated with better general well-being (standardised regression coefficient (SRC) 0.05; 95% confidence interval 0.00 to 0.11; p = 0.04), life satisfaction (0.06; 0.01 to 0.11; p = 0.03), psychosocial health (0.07; 0.02 to 0.12; p = 0.01) and quality of life (QoL) (0.06; 0.01 to 0.11; p = 0.02). Similarly, Self-aware (high first person singular pronouns, authentic, low clout) was associated with better general well-being, life satisfaction and psychosocial health (SRC 0.05, 0.09, 0.08), but Confident (high clout, first person plural pronouns, affiliation) was associated with worse life satisfaction, psychosocial health and QoL (SRC -0.06, -0.09, -0.06).Conclusion: If replicated in 'real-world' settings (e.g., social media), language patterns could provide naturalistic insights into early adolescents' well-being. [ABSTRACT FROM AUTHOR]

Aims: To compare the acceptability, reliability and validity of five contemporary diabetes‐specific quality of life (QoL) scales among adults with type 1 diabetes in the United Kingdom and Australia. Methods: Adults with type 1 diabetes (UK = 1139, Australia = 439) completed a cross‐sectional, online survey including ADDQoL‐19, DCP, DIDP, DSQOLS and Diabetes QoL‐Q, presented in randomised order. After completing each scale, participants rated it for clarity, relevance, ease of completion, length and comprehensiveness. We examined scale acceptability (scale completion and user ratings), response patterns, structure (exploratory and confirmatory factor analyses) and validity (convergent, concurrent, divergent and known groups). To assess cross‐country reproducibility, analyses conducted on the UK dataset were replicated in the Australian dataset. Results: Findings were largely consistent between countries. All scales were acceptable to participants: ≥90% completing all items, and ≥80% positive user ratings, except for DSQOLS' length. Scale structure was not supported for the DCP. Overall, in terms of acceptability and psychometric evaluation, the DIDP was the strongest performing scale while the ADDQoL‐19 and Diabetes QoL‐Q scales also performed well. Conclusions: These findings suggest that the recently developed brief (7 items), neutrally worded DIDP scale is acceptable to adults with type 1 diabetes and has the strongest psychometric performance. However, questionnaire selection should always be considered in the context of the research aims, study design and population, as well as the wider published evidence regarding both the development and responsiveness of the scales. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to investigate oral health-related factors affecting the self-assessed psychological well-being (PW) and depressive symptoms of independent-living Australians aged 79 years and over living in the community in metropolitan Melbourne.Methods: The Melbourne Longitudinal Studies on Healthy Aging (MELSHA) program was used as the data source in this study and includes data on the health and well-being of older participants. The MELSHA baseline data collection occurred in 1994, the current study used data from the 2008 data collection and included 201 participants, who remained in the study. Data were analyzed using multiple linear regression (MLR) analysis with a stepwise procedure to identify the variables that accounted for a significant proportion of the variance in the participants' PW scores.Results: Present findings indicate that oral health may play a significant mediating role in PW through maintaining a presentable and acceptable physical appearance. Some 16.4 percent of participants reported feeling concerned about their dental appearance, either "Sometimes," "Often," or "Very often." Multivariate analysis showed significantly influences on PW positive and negative affect scores (P < 0.0001); and depressive symptoms (P < 0.0001) by participants' dentition status, enjoyment of meals, self-reported feeling of concern about the appearance of the mouth, social activity and self-assessment of general health. Final models explained 17.8, 20.1, and 24.6 percent of the variance of PW positive, negative affect scores, and depressive symptoms, respectively.Conclusions: Oral health, specifically the appearance of the mouth and dentition, plays a significant role in the PW of older Melbournians. Future cross-sectional and longitudinal studies are indicated to raise awareness on the changes required to improve the quality of life of the older population. [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]

Background: There are limited management options available for people with Type III intestinal failure (IF), with home parenteral nutrition (HPN) being the main treatment option. The aim of this research is to compare patient preferences in managing Type III IF using time trade-off (TTO) methodology and to determine which factors have the greatest impact on health-related quality of life (HRQoL).Methods: An interviewer-administered telephone survey was conducted on a cross-sectional cohort of 19 HPN participants. The survey was designed to measure HRQoL using a TTO methodology. Four different treatment options were presented, and participants decided how many years of life they would trade to have access to the treatment and hence a different health state. The 4 scenarios included reduction in line infections, optimization of care, small bowel growth (teduglutide), and intestinal transplantation. Health state utility scores were calculated.Results: The median health utility score for optimization of care and small bowel growth (teduglutide) were lowest (0.5; range 0-1) meaning a greater desire for this treatment. Intestinal transplant had the highest median utility score (1.0; range 0-1) indicating less willingness for this treatment option.Conclusions: This is the first known study to use TTO methodology assessing treatment options in people with IF requiring HPN. Results indicate people requiring HPN make careful decisions when considering treatment options. Facilities providing HPN services should focus on optimization of current care, which is highly valued by their patients. [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: This study evaluated the associations between oral and general health behaviours, self-reported health and quality of life of adults aged 75 years or older living independently in South Australia.Methods: A cross sectional study based on a self-report mailed questionnaire was conducted in 590 independently living adults aged 75 years or older. Self-ratings of oral health and general health were assessed using single-item global ratings. Quality of life was measured using the Oral Health Impact Profile and the EuroQol instrument for health utility.Results: The overall response rate was 78%. The current analyses were restricted to 354 dentate older adults. Increasing age and being female were negatively associated with EuroQol scores. Good self-rated oral and general health were more prevalent in participants with higher social status who also had lower oral health impact and higher EuroQol scores. Good self-rated oral and general health were less prevalent while oral health impact was greater in participants who ate few fruits, vegetables or dairy products.Conclusions: Self-rated health and quality of life were poor in older adults with inadequate fruit/vegetables/dairy intake and lower social status. These findings suggest that nutrition and socioeconomic factors may be important to the oral and general health of adults aged 75 years or older. [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]

Background: Lung cancer is one of the most commonly diagnosed cancers, and is a leading cause of cancer mortality world-wide. Due to lack of early specific symptoms, the majority of patients present with advanced, inoperable disease and five-year relative survival across all stages of non-small cell lung cancer (NSCLC) is 14%. People with lung cancer also report higher levels of symptom distress than those with other forms of cancer. Several benefits for survival and patient reported outcomes are reported from physical activity and exercise in other tumour groups. We report the protocol for a study investigating the benefits of exercise, behaviour change and symptom self-management for patients with recently diagnosed, inoperable, NSCLC.Methods: This multi-site, parallel-group, assessor-blinded randomised controlled trial, powered for superiority, aims to assess functional and patient-reported outcomes of a multi-disciplinary, home-based exercise and supportive care program for people commencing treatment. Ninety-two participants are being recruited from three tertiary-care hospitals in Melbourne, Australia. Following baseline testing, participants are randomised using concealed allocation, to receive either: a) 8 weeks of home-based exercise (comprising an individualised endurance and resistance exercise program and behaviour change coaching) and nurse-delivered symptom self-management intervention or b) usual care. The primary outcome is the between-group difference in the change in functional exercise capacity (six-minute walk distance) from baseline to post-program assessment. Secondary outcomes include: objective and self-reported physical activity levels, physical activity self-efficacy, behavioural regulation of motivation to exercise and resilience, muscle strength (quadriceps and grip), health-related quality of life, anxiety and depression and symptom interference.Discussion: There is a lack of evidence regarding the benefit of exercise intervention for people with NSCLC, particularly in those with inoperable disease receiving treatment. This trial will contribute to evidence currently being generated in national and international trials by implementing and evaluating a home-based program including three components not yet combined in previous research, for people with inoperable NSCLC receiving active treatment and involving longer-term follow-up of outcomes. This trial is ongoing and currently recruiting.Trial Registration: This trial was prospectively registered on the Australian New Zealand Clinical Trials Registry ( ACTRN12614001268639 : (4/12/14). [ABSTRACT FROM AUTHOR]

Background: IQ deficits are linked to even mild obstructive sleep apnoea (OSA) in children. Although OSA is commonly first diagnosed in the pre-school age group, a randomised trial is still needed to assess IQ outcomes after adenotonsillectomy in the pre-school age-group. This randomised control trial (RCT) will primarily determine whether adenotonsillectomy improves IQ compared to no adenotonsillectomy after 12 months, in preschool (3-5 year-old) children with mild to moderate OSA.Methods: This protocol is for an ongoing multi-centred RCT with a recruitment target of 210 subjects (105 in each arm). Children age 3-5 years with symptoms of OSA, are recruited through doctor referral, at the point of referral to the Ear Nose and Throat (ENT) services. Screening is initially with a questionnaire (Paediatric Sleep Questionnaire, PSQ) for symptoms of obstructive sleep apnoea (OSA). Where questionnaires are positive (suggestive of OSA) and ENT surgeons recommend them for adenotonsillectomy, they are invited to participate in POSTA. Baseline testing includes neurocognitive testing (IQ and psychometric evaluation with the neuropsychologist blinded to randomisation) and overnight polysomnography (PSG). Where the Obstructive Apnoea-Hypopnea Index (OAHI) from the PSG is <10/h per hour, consent for randomisation is sought; children with severe OSA (OAHI ≥ 10/h) are sent for immediate treatment and excluded from the study. After consent is obtained, participants are randomised to early surgery (within 2 months) or to surgery after a usual wait time of 12 months. Follow-up studies include repeat neurocognitive testing and PSG at 12 (with the waiting list group studied before their surgery) and 24 months after randomisation. Analysis will be by intention to treat. The primary outcome is IQ at 12 months' follow-up.Discussion: If IQ deficits associated with OSA are reversible 12 months after adenotonsillectomy compared to controls, future clinical practice advise would be to undertake early surgery in young children with OSA. The study could provide data on whether a window of opportunity exists for reversing IQ deficits linked to OSA in the pre-school age-group.Trial Registration: Australian and New Zealand Clinical Trials Registration Number ACTRN12611000021976 . [ABSTRACT FROM AUTHOR]

Background: The 2013 Global Burden of Disease Study demonstrated the increasing burden of diabetes and the challenge it poses to the health systems of all countries. The chronic and complex nature of diabetes requires active self-management by patients in addition to clinical management in order to achieve optimal glycaemic control and appropriate use of available clinical services. This study is an evaluation of a "real world" peer support program aimed at improving the control and management of type 2 diabetes (T2DM) in Australia.Methods: The trial used a randomised cluster design with a peer support intervention and routine care control arms and 12-month follow up. Participants in both arms received a standardised session of self-management education at baseline. The intervention program comprised monthly community-based group meetings over 12 months led by trained peer supporters and active encouragement to use primary health care and other community resources and supports related to diabetes. Clinical, behavioural and other measures were collected at baseline, 6 and 12 months. The primary outcome was the predicted 5 year cardiovascular disease risk using the United Kingdom Prospective Diabetes Study (UKPDS) Risk Equation at 12 months. Secondary outcomes included clinical measures, quality of life, measures of support, psychosocial functioning and lifestyle measures.Results: Eleven of 12 planned groups were successfully implemented in the intervention arm. Both the usual care and the intervention arms demonstrated a small reduction in 5 year UKPDS risk and the mean values for biochemical and anthropometric outcomes were close to target at 12 months. There were some small positive changes in self-management behaviours.Conclusions: The positive changes in self-management behaviours among intervention participants were not sufficient to reduce cardiovascular risk, possibly because approximately half of the study participants already had quite well controlled T2DM at baseline. Future research needs to address how to enhance community based programs so that they reach and benefit those most in need of resources and supports to improve metabolic control and associated clinical outcomes.Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12609000469213 . Registered 16 June 2009. [ABSTRACT FROM AUTHOR]

Background: Hepatitis C virus (HCV) compromises Health-related Quality of Life (HRQL) with detriments to Physical, Mental and Social health domains. Treatment with interferon and ribavirin is associated with side effects which further impair HRQL. New treatments appear potent, effective and tolerable. However, Patient Reported Outcomes instruments that capture the impact on HRQL for people with hepatitis C are largely non-specific and will be needed in the new treatment era. Therefore, we developed a conceptually valid multidimensional model of HCV-specific quality of life and pilot survey instrument, the Patient Reported Outcome Quality of Life survey for HCV (PROQOL-HCV).Methods: HCV patients from France (n = 30), Brazil (n = 20) and Australia (n = 20) were interviewed to investigate HCV-HRQL issues raised in the scientific literature and by treatment specialists. Interviews were recorded, transcribed and translated into English and French.Results: Fifteen content dimensions were derived from the qualitative analysis, refined and fitted to four domains: (1) Physical Health included: fatigue, pain, sleep, sexual impairment and physical activity; (2) Mental Health: psychological distress, psychosocial impact, and cognition; (3) Social Health: support, stigma, social activity, substance use; (4) TREATMENT: management, side effects, and fear of treatment failure. The impact of some dimensions extended beyond their primary domain including: physical activity, cognition, sleep, sexual impairment, and the three treatment dimensions. A bank of 300 items was constructed to reflect patient reports and, following expert review, reduced to a 72-item pilot questionnaire.Conclusion: We present a conceptually valid multidimensional model of HCV-specific quality of life and the pilot survey instrument, PROQOL-HCV. The model is widely inclusive of the experience of hepatitis C and the first to include the treatment dimension. [ABSTRACT FROM AUTHOR]

Background: Pulmonary rehabilitation (PR) is an effective intervention for the management of people with chronic obstructive pulmonary disease (COPD). However, available resources are often limited, and many patients bear with poor availability of programmes. Sustaining PR benefits and regular exercise over the long term is difficult without any exercise maintenance strategy. In contrast to traditional centre-based PR programmes, telerehabilitation may promote more effective integration of exercise routines into daily life over the longer term and broaden its applicability and availability. A few studies showed promising results for telerehabilitation, but mostly with short-term interventions. The aim of this study is to compare long-term telerehabilitation with unsupervised exercise training at home and with standard care.Methods/design: An international multicentre randomised controlled trial conducted across sites in three countries will recruit 120 patients with COPD. Participants will be randomly assigned to telerehabilitation, treadmill and control, and followed up for 2 years. The telerehabilitation intervention consists of individualised exercise training at home on a treadmill, telemonitoring by a physiotherapist via videoconferencing using a tablet computer, and self-management via a customised website. Patients in the treadmill arm are provided with a treadmill only to perform unsupervised exercise training at home. Patients in the control arm are offered standard care. The primary outcome is the combined number of hospitalisations and emergency department presentations. Secondary outcomes include changes in health status, quality of life, anxiety and depression, self-efficacy, subjective impression of change, physical performance, level of physical activity, and personal experiences in telerehabilitation.Discussion: This trial will provide evidence on whether long-term telerehabilitation represents a cost-effective strategy for the follow-up of patients with COPD. The delivery of telerehabilitation services will also broaden the availability of PR and maintenance strategies, especially to those living in remote areas and with no access to centre-based exercise programmes.Trial Registration: ClinicalTrials.gov: NCT02258646 . [ABSTRACT FROM AUTHOR]

Background: Improving vitamin D (25-OHD) status may be an important modifiable factor that could reduce disability severity, fall-rates and mortality associated after hip fracture surgery. Providing a loading-dose post-surgery may overcome limitations in adherence to daily supplementation.Method: In this randomized, double-blind, placebo-controlled trial, 218 adults, aged 65-years or older, requiring hip fracture surgery were assigned to receive a single loading-dose of cholecalciferol (250,000 IU vitamin-D3, the REVITAHIP - Replenishment of Vitamin D in Hip Fracture strategy) or placebo, both receiving daily vitamin-D(800 IU) and calcium (500 mg) for 26-weeks. Outcome measures were 2.4 m gait-velocity, falls, fractures, death (Week-4), 25-OHD levels, quality-of-life measure (EuroQoL) and mortality at weeks-2, 4 and 26.Results: Mean age of 218 participants was 83.9(7.2) years and 77.1 % were women. Baseline mean 25-OHD was 52.7(23.5)nmol/L, with higher levels at Week-2 (73 vs 66 nmol/L; p = .019) and Week-4 (83 vs 75 nmol/L; p = .030) in the Active-group, but not at Week-26. At week-4, there were no differences in 2.4 m gait-velocity (0.42 m/s vs 0.39 m/s, p = .490), fractures (2.7 % vs 2.8 %, p = .964) but Active participants reported less falls (6.3 % vs 21.1 %, χ(2) = 4.327; p = 0.024), with no significant reduction in deaths at week-4 (1 vs 3, p = 0.295), higher percentage reporting 'no pain or discomfort' (96.4 % vs 88.8 %, p = 0.037), and trended for higher EuroQoL-scores (p = 0.092) at week-26. One case of hypercalcemia at week-2 normalised by week-4.Conclusion: Among older people after hip fracture surgery, the REVITAHIP strategy is a safe and low cost method of improving vitamin-D levels, reducing falls and pain levels.Trial Registration: The protocol for this study is registered with the Australian New Zealand Clinical Trials Registry ANZCTRN ACTRN12610000392066 (Date of registration: 14/05/2010). [ABSTRACT FROM AUTHOR]

Objectives: Psychosocial factors are important determinants of an individual's health. This study examines the association between health scores and social network factors on mental health across different life stages.Methods: Data were drawn from the Household Income and Labour Dynamics in Australia survey for adolescents (n = 1739), adults (n = 10,309) and seniors (n = 2287). Hierarchical regression modelling was applied to examine effects within and across age groups. All the variables were derived from the self-completion questionnaire.Results: The social network factors were statistically significant predictors of mental health outcomes for all three life stages. For adolescents, the three social network factors were statistically significant with social isolation having the largest impact (β = -.284, p < .001), followed by social connection (β = .084, p < .001) and social trust having a similar effect (β = .073, p < .001). For adults social isolation had the highest impact (β = -.203, p < .001), followed by social connection (β = .110, p < .001) and social trust (β = .087, p < .001).The results for seniors were social isolation (β = -.188, p < .001), social connection (β = .147, p < .001) and social trust (β = .032, p < .05).Conclusions: After adding the social network factors, the models improved significantly with social isolation playing the most significant role across all life stages, whereas the other social network factors played a differentiated role depending upon the life stage. These findings have practical implications in the design of mental health interventions across different life stages. [ABSTRACT FROM AUTHOR]

Background: Action research (AR) and randomized controlled trials (RCTs) are usually considered to be theoretically and practically incompatible. However, we argue that their respective strengths and weaknesses can be complementary. We illustrate our argument from a recent study assessing the effect of telemonitoring on health-related quality of life, self-care, hospital use, costs and the experiences of patients, informal carers and health care professionals in two urban hospital services and one remote rural primary care service in New Zealand.Methods: Data came from authors' observations and field notes of discussions with three groups: the healthcare providers and healthcare consumers who participated in the research, and a group of 17 researchers and collaborators. The consumers had heart failure (Site A, urban), airways disease (Site B, urban), and diabetes (Site C, rural). The research ran from 2008 (project inception) until 2012 (project close-off). Researchers came from a wide range of disciplines. Both RCT and AR methods were recognised from early in the process but often worked in parallel rather than together. In retrospect, we have mapped our observed research processes to the AR cycle characteristics (creation of communicative space, democracy and participation, iterative learning and improvement, emergence, and accommodation of different ways of knowing).Results: We describe the context, conduct and outcomes of the telemonitoring trial, framing the overall process in the language of AR. Although not fully articulated at the time, AR processes made the RCT sensitive to important context, e.g. clinical processes. They resulted in substantive changes to the design and conduct of the RCT, and to interpretation and uptake of findings, e.g. a simpler technology procurement process emerged. Creating a communicative space enabled co-design between the researcher group and collaborators from the provider participant group, and a stronger RCT design.Conclusions: It appears possible to enhance the utility of RCTs by explicitly embedding them in an AR framework to shape stronger RCT design. The AR process and characteristics may enable researchers to evaluate telehealth while enhancing rather than compromising the quality of an RCT, where research results are returned to practice as part of the research process.Trial Registration: Australian New Zealand Clinical Trials Registry, reference ACTRN12610000269033 . [ABSTRACT FROM AUTHOR]

Background: Limited evidence exists regarding the relationship between health literacy and health-related quality of life (HRQoL) in Australian patients from primary care. The objective of this study was to investigate the impact of health literacy on HRQoL in a large sample of patients without known vascular disease or diabetes and to examine whether the difference in HRQoL between low and high health literacy groups was clinically significant.Methods: This was a cross-sectional study of baseline data from a cluster randomised trial. The study included 739 patients from 30 general practices across four Australian states conducted in 2012 and 2013 using the standard Short Form Health Survey (SF-12) version 2. SF-12 physical component score (PCS-12) and mental component score (MCS-12) are derived using the standard US algorithm. Health literacy was measured using the Health Literacy Management Scale (HeLMS). Multilevel regression analysis (patients at level 1 and general practices at level 2) was applied to relate PCS-12 and MCS-12 to patient reported life style risk behaviours including health literacy and demographic factors.Results: Low health literacy patients were more likely to be smokers (12 % vs 6 %, P = 0.005), do insufficient physical activity (63 % vs 47 %, P < 0.001), be overweight (68 % vs 52 %, P < 0.001), and have lower physical health and lower mental health with large clinically significant effect sizes of 0.56 (B (regression coefficient) = -5.4, P < 0.001) and 0.78(B = -6.4, P < 0.001) respectively after adjustment for confounding factors. Patients with insufficient physical activity were likely to have a lower physical health score (effect size = 0.42, B = -3.1, P < 0.001) and lower mental health (effect size = 0.37, B = -2.6, P < 0.001). Being overweight tended to be related to a lower PCS-12 (effect size = 0.41, B = -1.8, P < 0.05). Less well-educated, unemployed and smoking patients with low health literacy reported worse physical health. Health literacy accounted for 45 and 70 % of the total between patient variance explained in PCS-12 and MCS-12 respectively.Conclusions: Addressing health literacy related barriers to preventive care may help reduce some of the disparities in HRQoL. Recognising and tailoring health related communication to those with low health literacy may improve health outcomes including HRQoL in general practice. [ABSTRACT FROM AUTHOR]

Background: Aromatase inhibitor induced musculoskeletal syndrome is experienced by approximately half of women taking aromatase inhibitors, impairing quality of life and leading some to discontinue treatment. Evidence for effective treatments is lacking. We aimed to understand the manifestations and impact of this syndrome in the Australian breast cancer community, and strategies used for its management.Methods: A survey invitation was sent to 2390 members of the Breast Cancer Network Australia Review and Survey Group in April 2014. The online questionnaire included 45 questions covering demographics, aromatase inhibitor use, clinical manifestations and risk factors for the aromatase inhibitor musculoskeletal syndrome, reasons for treatment discontinuation and efficacy of interventions used.Results: Aromatase inhibitor induced musculoskeletal syndrome was reported by 302 (82 %) of 370 respondents. Twenty-seven percent had discontinued treatment for any reason and of these, 68 % discontinued because of the musculoskeletal syndrome. Eighty-one percent had used at least one intervention from the following three categories to manage the syndrome: doctor prescribed medications, over-the-counter/complementary medicines or alternative/non-drug therapies. Anti-inflammatories, paracetamol (acetaminophen) and yoga were most successful in relieving symptoms in each of the respective categories. Almost a third of respondents reported that one or more interventions helped prevent aromatase inhibitor discontinuation. However, approximately 20 % of respondents found no intervention effective in any category.Conclusion: We conclude that aromatase inhibitor induced musculoskeletal syndrome is a significant issue for Australian women and is an important reason for treatment discontinuation. Women use a variety of interventions to manage this syndrome; however, their efficacy appears limited. [ABSTRACT FROM AUTHOR]

Background: In Australia, 61.5 % of children aged 3-4 attend Early Childhood Education and Care (ECEC) programs. Children's experiences within these programs vary widely and impact directly on educational wellbeing and social development. Research has shown that higher quality programs enhance children's learning and developmental outcomes, foster social participation and have long-lasting effects on their productivity as adults. Quality matters, yet we do not know what components of ECEC result in a quality program. Effective Early Educational Experiences (E4Kids) is a 5-year longitudinal study designed to identify and assess the impact of mainstream ECEC programs and program components on children's learning, development, social inclusion and well-being. E4Kids sets out to measure quality ECEC; identify components that add value and positively impact children's outcomes; evaluate the effects of child, family, community and environment characteristics on programs; and provide evidence on how best to invest in ECEC.Methods/design: E4Kids follows a sample of 2,494 children who have experienced a variety of approved care programs (long day care, kindergarten, family day care and occasional care), as well as 157 children who have not accessed such programs. Children are tracked to the first point of National Assessment Program - Literacy and Numeracy (NAPLAN) testing at Year 3. The study presents a multi-level design in which ECEC programs were sampled from two states - Queensland and Victoria - then randomly sampled from two greater metropolitan regions and two regional and remote locations. Parents, centre directors, educators and carers complete questionnaires to provide information on demographics and children's progress. Data collected also include the make-up and organisation of ECEC programs and schools children attended. The quality of adult-child interactions is directly assessed using the Classroom Assessment Scoring System (CLASS) and direct testing of children's cognitive abilities and achievements is undertaken over 3 years and linked with NAPLAN scores.Discussion: Findings from the E4Kids study have the potential to influence the quality of ECEC available in Australia by providing up-to-date evidence on the impact of ECEC programs and program components to inform future policy decisions and research. [ABSTRACT FROM AUTHOR]

Objective: Deciding on public funding for pharmaceuticals on the basis of value for money is now widespread. We suggest that evidence-based assessment of value has restricted the availability of medicines in Australia in a way that reflects the relative bargaining power of government and the pharmaceutical industry. We propose a simple informal game-theoretic model of bargaining between the funding agency and industry and test its predictions using a logistic multiple regression model of past funding decisions made by the Pharmaceutical Benefits Advisory Committee in Australia.Method: The model estimates the probability of a drug being recommended for subsidy as a function of incremental cost per quality-adjusted life-year (QALY), as well as other drug and market characteristics. Data are major submissions or resubmissions from 1993 to 2009 where there was a claim of superiority and evidence of a difference in quality of life. Independent variables measure the incremental cost per QALY, the cost to the public budget, the strength and quality of the clinical and economic evidence, need as measured by severity of illness and the availability of alternative treatments, whether or not a resubmission, and newspaper reports as a measure of public pressure. We report the odds ratio for each variable and calculate the ratio of the marginal effect of each variable to the marginal effect of the cost per QALY as a measure of the revealed willingness to pay for each of the variables that influence the decision.Results: The results are consistent with a bargaining model where a 10,000 Australian dollar ($A) fall in value (increase in cost per QALY) reduces the average probability of public funding from 37 to 33% (95% CI 34-32). If the condition is life threatening or the drug has no active comparator, then the odds of a positive recommendation are 3.18 (95% CI 1.00-10.11) and 2.14 (95% CI 0.95-4.83) greater, equivalent to a $A33,000 and a $A21,000 increase in value (fall in cost per QALY). If both conditions are met, the odds are increased by 4.41 (95% CI 1.28-15.24) times, equivalent to an increase in value of $A46,000. Funding is more likely as time elapses and price falls, but we did not find clear evidence that public or corporate pressure influences decisions.Conclusion: Evidence from Australia suggests that the determinants of public funding and pricing decisions for medicines reflect the relative bargaining power of government and drug companies. Value for money depends on the quality of evidence, timing, patient need, perceived benefit and opportunity cost; these factors reflect the potential gains from striking a bargain and the risk of loss from not doing so. [ABSTRACT FROM AUTHOR]

Background: Identifying the housing preferences of people with complex disabilities is a much needed, but under-developed area of practice and scholarship. Despite the recognition that housing is a social determinant of health and quality of life, there is an absence of empirical methodologies that can practically and systematically involve consumers in this complex service delivery and housing design market. A rigorous process for making effective and consistent development decisions is needed to ensure resources are used effectively and the needs of consumers with complex disability are properly met.Methods/design: This 3-year project aims to identify how the public and private housing market in Australia can better respond to the needs of people with complex disabilities whilst simultaneously achieving key corporate objectives. First, using the Customer Relationship Management framework, qualitative (Nominal Group Technique) and quantitative (Discrete Choice Experiment) methods will be used to quantify the housing preferences of consumers and their carers. A systematic mixed-method, quasi-experimental design will then be used to quantify the development priorities of other key stakeholders (e.g., architects, developers, Government housing services etc.) in relation to inclusive housing for people with complex disabilities. Stakeholders randomly assigned to Group 1 (experimental group) will participate in a series of focus groups employing Analytical Hierarchical Process (AHP) methodology. Stakeholders randomly assigned to Group 2 (control group) will participate in focus groups employing existing decision making processes to inclusive housing development (e.g., Risk, Opportunity, Cost, Benefit considerations). Using comparative stakeholder analysis, this research design will enable the AHP methodology (a proposed tool to guide inclusive housing development decisions) to be tested.Discussion: It is anticipated that the findings of this study will enable stakeholders to incorporate consumer housing preferences into commercial decisions. Housing designers and developers will benefit from the creation of a parsimonious set of consumer-led housing preferences by which to make informed investments in future housing and contribute to future housing policy. The research design has not been applied in the Australian research context or elsewhere, and will provide a much needed blueprint for market investment to develop viable, consumer directed inclusive housing options for people with complex disability. [ABSTRACT FROM AUTHOR]

Introduction: We tested the ability of the Assessment of New Radiation Oncology Technology and Treatments framework to determine the clinical efficacy and safety of intensity-modulated radiation therapy (IMRT) compared with 3-dimensional radiation therapy (3DCRT) for post-prostatectomy radiation therapy (PPRT) to support its timely health economic evaluation.Methods: Treatment plans produced using FROGG guidelines provided dosimetry parameters for both techniques at 64 Gy and 70 Gy and were also used to model early and late outcome probabilities. Clinical parameters were derived from early toxicity and quality of life patient data, systematic literature review and expert opinion. Dosimetry parameters were correlated with the measures of clinical efficacy and safety.Results: Data from two patient cohorts (29 and 27 respectively) were collected within the project timeframe, providing evidence for acute toxicity and quality of life, and dosimetric comparisons. Relative rates of tumour control probability (TCP) and normal tissue control probability (NTCP) modelling were readily derived from the planning exercise and demonstrated advantages in uncomplicated TCP for IMRT over 3DCRT, predominantly due to normal tissue sparing. The safety of IMRT delivery was demonstrated with TCP uncompromised by IMRT protocol violations, which achieved rectal sparing only by reducing minimum target dose and coverage.Conclusion: Sources of desk-top and patient-based evidence were successfully used to demonstrate potential improved clinical efficacy and safety of applying dose escalation using IMRT instead of 3DCRT in PPRT. [ABSTRACT FROM AUTHOR]

Background: Meaning in life is a key indicator of subjective well-being and quality of life. Further developments in understanding and enhancing the construct will depend inter alia on the sound measurement thereof. This study is at the forefront of applying modern psychometric techniques to the Meaning in Life Questionnaire, a scale widely used to assess meaning in life.Method: The Rasch rating scale model was applied to the Presence and Search subscales of the Meaning in Life Questionnaire using a sample of 601 adults from South Africa, Australia, and New Zealand.Results: The Presence subscale was insensitive at high levels of presence of meaning while the majority of the respondents fell in that range. Removal of item 9 ("My life has no clear purpose") and collapsing the response categories indicative of low and medium levels of the latent construct significantly improved the subscale's targeting and fit to the Rasch model, resulting in a subscale that exhibited differential item functioning on items 1 ("I understand my life's meaning"), 4 ("My life has a clear sense of purpose"), and 5 ("I have a good sense of what makes my life meaningful") for country, but none for gender, age group, or education level. The Search subscale yielded disordered category threshold calibrations, but after collapsing some of the response categories representing low and medium levels of the target construct, a subscale that demonstrated good fit to the Rasch model, good targeting, and no differential item functioning resulted.Conclusions: In terms of this particular scale, adaptation of the rating scale and removal of item 9 is recommended. Country-level parameter estimates may be needed for items that exhibited differential item functioning. The study also has significant implications for the theory, measurement, and practice of meaning in and quality of life in general. Reasons for and the far-reaching implications of the insensitivity of the Presence subscale for high levels of presence of meaning on, for example, the correlation between meaning in life and indicators of health are contemplated. Further investigation of the construct's nature and measurement, especially at high levels, is indicated. [ABSTRACT FROM AUTHOR]

Aims: Disease-specific knowledge may influence disease outcome and quality of life in children with inflammatory bowel disease (IBD). This prospective study aimed to define IBD-related knowledge in a group of Australian children with IBD and their parents using a validated measure of disease-specific knowledge, the Inflammatory Bowel Disease Knowledge Inventory Device (IBD-KID).Methods: Children (less than 18 years) diagnosed with IBD who were members of the Australian patient support organisation were identified. Each family was sent copies of the IBD-KID. Children aged 10-18 years and all parents were asked to complete the IBD-KID and to also provide demographic details and disease characteristics.Results: Replies were received from 196 families: 262 parents and 128 children completed questionnaires. Most children had a diagnosis of Crohn disease (65%) and 51% were male. Children diagnosed in the preceding 6 years scored higher than those with longer time since diagnosis. Parents had better scores in the IBD-KID than the children (P < 0.0001). Overall, parents and children had poor understanding of key management issues for IBD (such as side effects of steroids), important outcomes (e.g. growth) and the use of complementary therapies.Conclusions: Consistent patterns of IBD-related knowledge were noted in this large group of Australian children with IBD and their parents. Measurement of disease-related knowledge with the IBD-KID can identify gaps in understanding, thereby permitting focused educational activities. Although these knowledge gaps may impact upon outcomes, further prospective studies are now required to elucidate the relationships between enhanced knowledge and specific outcomes. [ABSTRACT FROM AUTHOR]

Background: Physical activity and consuming a healthy diet have clear benefits to the physical and psychosocial health of cancer survivors, with guidelines recognising the importance of these behaviors for cancer survivors. Interventions to promote physical activity and improve dietary behaviors among cancer survivors and carers are needed. The aim of this study was to determine the effects of a group-based, face-to-face multiple health behavior change intervention on behavioral outcomes among cancer survivors of mixed diagnoses and carers.Methods: The Exercise and Nutrition Routine Improving Cancer Health (ENRICH) intervention was evaluated using a two-group pragmatic randomized controlled trial. Cancer survivors and carers (n = 174) were randomly allocated to the face-to-face, group-based intervention (six, theory-based two-hour sessions delivered over 8 weeks targeting healthy eating and physical activity [PA]) or wait-list control (after completion of 20-week data collection). Assessment of the primary outcome (pedometer-assessed mean daily step counts) and secondary outcomes (diet and alcohol intake [Food Frequency Questionnaire], self-reported PA, weight, body mass index, and waist circumference) were assessed at baseline, 8-and 20-weeks.Results: There was a significant difference between the change over time in the intervention group and the control group. At 20 weeks, the intervention group had increased by 478 steps, and the control group had decreased by 1282 steps; this represented an adjusted mean difference of 1761 steps (184 to 3337; P = 0.0028). Significant intervention effects for secondary outcomes, included a half serving increase in vegetable intake (difference 39 g/day; 95 % CI: 12 to 67; P = 0.02), weight loss (kg) (difference -1.5 kg; 95 % CI, -2.6 to -0.3; P = 0.014) and change in body mass index (kg/m(2)) (difference -0.55 kg/m(2); 95 % CI, -0.97 to -0.13; P = 0.012). No significant intervention effects were found for self-reported PA, total sitting time, waist circumference, fruit, energy, fibre, alcohol, meat, or fat consumption.Conclusions: The ENRICH intervention was effective for improving PA, weight, body mass index, and vegetable consumption even with the inclusion of multiple cancer types and carers. As an example of successful research translation, the Cancer Council NSW has subsequently adopted ENRICH as a state-wide program.Trial Registration: Australian New Zealand Clinical Trials Register identifier: ANZCTRN1260901086257. [ABSTRACT FROM AUTHOR]