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Introduction: The Australian population presenting with surgical pathology is becoming older, frailer and more comorbid. Shared decision-making is rapidly becoming the gold standard of care for patients considering high-risk surgery to ensure that appropriate, value-based healthcare decisions are made. Positive benefits around patient perception of decision-making in the immediacy of the decision are described in the literature. However, short-term and long-term holistic patient-centred outcomes and cost implications for the health service require further examination to better understand the full impact of shared decision-making in this population., Methods: We propose a novel multidisciplinary shared decision-making model of care in the perioperative period for patients considering high-risk surgery in the fields of general, vascular and head and neck surgery. We assess it in a two arm prospective randomised controlled trial. Patients are randomised to either 'standard' perioperative care, or to a multidisciplinary (surgeon, anaesthetist and end-of-life care nurse practitioner or social worker) shared decision-making consultation. The primary outcome is decisional conflict prior to any surgical procedure occurring. Secondary outcomes include the patient's treatment choice, how decisional conflict changes longitudinally over the subsequent year, patient-centred outcomes including life impact and quality of life metrics, as well as morbidity and mortality. Additionally, we will report on healthcare resource use including subsequent admissions or representations to a healthcare facility up to 1 year., Ethics and Dissemination: This study has been approved by the Hunter New England Human Research Ethics Committee (2019/ETH13349). Study findings will be presented at local and national conferences and within scientific research journals., Trial Registration Number: ACTRN12619001543178., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: This article is part of a series on methods for living guidelines, consolidating practical experiences from developing living guidelines. It focuses on methods for identification, selection, and prioritization of clinical questions for a living approach to guideline development., Study Design and Setting: Members of the Australian Living Evidence Consortium, the National Institute of Health and Care Excellence and the US Grading of Recommendations, Assessment, Development and Evaluations Network, convened a working group. All members have expertize and practical experience in the development of living guidelines. We collated methods, documents on prioritization from each organization's living guidelines, conducted interviews and held working group discussions. We consolidated these to form best practice principles which were then edited and agreed on by the working group members., Results: We developed best practice principles for (1) identification, (2) selection, and (3) prioritization, of questions for a living approach to guideline development. Several different strategies for undertaking prioritizing questions are explored., Conclusion: The article provides guidance for prioritizing questions in living guidelines. Subsequent articles in this series explore consumer involvement, search decisions, and methods decisions that are appropriate for questions with different priority levels., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: To introduce methods for living guidelines based on practical experiences by the Australian Living Evidence Consortium (ALEC), the National Institute of Health and Care Excellence (NICE), and the Infectious Diseases Society of America (IDSA), with methodological support from the US Grading of Recommendations, Assessment, Development and Evaluations (GRADE) Network., Study Design and Setting: Members of ALEC, NICE, and the US GRADE Network, convened a working group to share experiences of the methods used to develop living guidelines and outline the key differences between traditional and living guidelines methods., Results: The guidance includes the following steps: 1) deciding if the guideline is a priority for a living approach, 2) preparing for living guideline development, 3) literature surveillance and frequency of searching, 4) assessment and synthesis of the evidence, 5) publication and dissemination, and 6) transitioning recommendations out of living mode., Conclusion: This paper introduces methods for living guidelines and provides examples of the similarities and differences in approach across multiple organizations conducting living guidelines. It also introduces a series of papers exploring methods for living guidelines based on our practical experiences, including consumer involvement, selecting and prioritizing questions, search decisions, and methods decisions., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

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., (© 2023. The Author(s).)

Background: Over the last decade, the treatment landscape for moderate-severe psoriasis has rapidly evolved. The Australasian College of Dermatologists sought to review and update previously published treatment goals for moderate-severe psoriasis., Methods: A modified Delphi approach was used. Comprehensive literature review and guideline evaluation resulted in the development of statements and other questions to establish current clinical practices. Two rounds of anonymous voting were undertaken, with a collaborative meeting held in between to discuss areas of discordance. Overall, consensus was defined as achievement of ≥75% agreement in the range 7-9 on a 9-point scale (1 strongly disagree; 9 strongly agree)., Results: Consensus was achieved on 26/29 statements in round 1 and a further 20 statements in round 2. There was strong agreement to expanding the classification/definition of psoriasis severity by including a choice of metrics, incorporating quality of life measures, and widening the scope of high-impact sites. Consensus was also reached on revised treatment response criteria, which were then incorporated into a new treatment algorithm. There was discordance with the current requirement to undertake a trial with established systemic agents before accessing targeted therapy., Conclusion: The ability of new targeted treatment options to change the narrative in psoriasis patient care can only be properly realised if challenges to timely and equitable access are addressed. The proposed framework for the assessment, classification and management of moderate-severe psoriasis aligns with international recommendations. Its adoption into Australian clinical practice is hoped to improve treatment outcomes and patients' satisfaction with their care., (© 2023 The Authors. Australasian Journal of Dermatology published by John Wiley & Sons Australia, Ltd on behalf of Australasian College of Dermatologists.)

Objective: This study examined the inter-rater agreement between child-self and parental proxy health-related quality of life (HRQoL) ratings (overall and domain level) using two different generic child-specific measures, the Child Health Utility 9D (CHU9D) and the Pediatric Quality of Life Inventory (PedsQL TM ), in a community-based sample of Australian children. A secondary objective was to investigate the impact of age on child-parent agreement across the dimensions of the two measures., Methods: A total of 85 child-parent dyads (children aged 6-12 years) recruited from the community completed the self and proxy versions of the CHU9D and the PedsQL TM , respectively. The inter-rater agreement was estimated using Concordance Correlation Coefficients (CCC) and Gwet's Agreement Coefficient (AC 1 ) for the overall sample and across age-groups., Results: Agreement was low for overall HRQoL for both the CHU9D (CCC = 0.28) and the PedsQL TM (CCC = 0.39). Across the CHU9D dimensions, agreement was the highest for 'sad' (AC 1 = 0.83) and lowest for 'tired' (AC 1 = 0.31). The PedsQL TM demonstrated stronger agreement (AC 1 = 0.41-0.6) for the physical health dimension but weaker for the psychosocial dimensions (AC 1 < 0.4). Except for the 'tired' dimension, agreement was consistent across age-groups with the CHU9D, whilst the PedsQL TM showed poor agreement for most of the psychosocial health items among the older age-groups only (8-10 and 11-12 years)., Conclusion: This study highlights that the agreement between child and parent proxy reported HRQoL may be influenced by both the measure used and the age of the child. These findings may have implications for the economic evaluation of healthcare interventions and services in child populations when both child and proxy perspectives are considered in the assessment of child HRQoL., (© 2023. The Author(s).)

Background: Patient reported outcomes measures (PROMs) can provide valuable metrics in clinical trials and cancer registries. To ensure relevance, patient participation must be optimized and PROMs be highly acceptable to patients. There are few data reporting methods to maximize recruitment and a lack of consensus regarding appropriate PROMs for thyroid cancer survivors., Methods: All patients with a new diagnosis of thyroid (excluding micropapillary and anaplastic) cancer within a single Australian health district between January 2020 and December 2021 were invited to complete PROMs electronically, and self-report ease of use and comprehensiveness of each tool. Participants completed Short Form-12 (SF-12), European Organization of Research and Treatment of Cancer (EORTC-QLQ-C30), City of Hope Quality of Life-Thyroid Version (COH-TV) and Thyroid Cancer Quality of Life Survey (ThyCaQoL). Semi-structured qualitative telephone interviews explored patient priorities. An enhanced, multimodal recruitment strategy was instituted after 12 months due to low response rates., Results: Survey completion improved under enhanced recruitment (37/62, 60% versus 19/64, 30%, P = 0.0007) with no differences in demographic or clinical characteristics. Few (4%-7%) respondents rated surveys as difficult to complete. No single PROM comprehensively captured health-related quality of life, with disease-specific tools performing marginally better (54% ThyCaQoL and 52% CoH-TV) compared to generic tools (38% SF-12 and 42% EOROTC-QLQ-C30). Qualitative data suggested that concurrent diagnoses, and survey invitation prior to surgery, made surveys more difficult to complete., Conclusion: A comprehensive and representative assessment of PROMs in thyroid cancer survivors requires the use of multiple survey tools and specialized staff to maximize recruitment., (© 2023 The Authors. ANZ Journal of Surgery published by John Wiley & Sons Australia, Ltd on behalf of Royal Australasian College of Surgeons.)

Background: This study aimed to investigate prosocial behaviour-those behaviours that benefit others or enhance relationships with others-as a mediator of the associations between green space quality and child health-related outcomes (physical activity, mental health, and health-related quality of life (HRQOL))., Methods: This study involved data from 4983 children with 10-year follow-up (2004-2014) retrieved from the Longitudinal Study of Australian Children. Green space quality (the exposure), prosocial behaviour (the candidate mediator), and child health-related outcomes were assessed biennially based on caregiver reports. Causal mediation analysis was used, with four mediation models developed for each outcome., Results: Mediation by prosocial behaviour appeared in the late childhood mediation model with higher mediation proportions reported compared to models of earlier and middle childhood. Prosocial behaviour had moderate mediation consistency for the association between green space quality and physical activity enjoyment, but no mediation was evident for other physical activity variables. Prosocial behaviour had low mediation consistency for child mental health (internalising and externalising subscales). Similarly, low mediation consistency of prosocial behaviour was also evident for all HRQOL variables, such as physical, emotional, social, school functioning, psychosocial health, and total quality of life (QOL)., Conclusion: Prosocial behaviour partially mediated the association between green space quality and child health-related outcomes (physical activity enjoyment, mental health, and HRQOL). Improving the quality of neighbourhood green space that supports the development of prosocial behaviour may result in better child health-related outcomes. Other physical activity variables might not specifically relate to social interactions, and therefore, no mediation by prosocial behaviour was apparent., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany.)

Purpose: To compare health-related quality of life (HRQoL) between mothers and females who were voluntarily or involuntarily childless, across their reproductive years., Methods: 4100 females born in 1973-78 from the Australian Longitudinal Study on Women's Health were followed for 22 years. Motherhood status was defined by females' reports in Survey 8 (2018, 40-45 years) on their fertility, attempts to conceive, use of in vitro fertilization and fertility hormones, and number of children. HRQoL was assessed in each survey using the 36-Item Short Form Survey (SF-36). Linear mixed models were used to assess the associations between motherhood status and HRQoL., Results: Over 22 years, compared with females who were voluntarily childless, mothers on average had better HRQoL (shown by scores 1.5 to 3.4 points higher on five of the eight SF-36 subscales), while females who were involuntarily childless scored 2.2 to 3.0 points lower on three of eight SF-36 subscales. Compared with females who were voluntarily childless, teen mothers (age at first birth < 20 years) scored lower on role limitations due to physical problems subscale (b = -5.5, 95% CI: -9.3, -1.6), while females with either two, or three or more children scored 1.6 to 4.8 points higher on seven of eight SF-36 subscales., Conclusions: Females who were childless had poorer HRQoL than mothers. Further research is needed to understand the underlying mechanisms, which could inform policymakers on how to reduce the health disparities and improve long-term health outcomes for females., (© 2023. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Background: The prevalence of sleep-disordered breathing in children is underestimated due to impediments in detection and diagnosis. Consequently, delayed management may affect the quality of life and the growth and development of a child. Due to their patient demographic, orthodontists are optimally positioned to identify those at risk of sleep-disordered breathing and make referrals for investigation and management. This study aims to determine the prevalence of children at risk of sleep-disordered breathing in an Australian orthodontic population., Methods: A 1-year retrospective study was conducted in an urban Western Australian private orthodontic practice with two branches in similar socioeconomic demographics. The responses of new patients to a modified paediatric sleep questionnaire and standard medical history form were recorded., Results: In 1209 patients (4-18 years), 7.3% were at risk of sleep-disordered breathing. An association between sex and the potential risk of sleep-disordered breathing was found with 11% of males at risk of sleep-disordered breathing compared to 7% of females (P = 0.012)., Conclusions: The relatively high prevalence of children at risk of sleep-disordered breathing presenting for orthodontic care presents an opportunity to identify at-risk individuals through routine use of the paediatric sleep questionnaire. This would facilitate early referral for diagnosis and management of sleep-disordered breathing., (© 2022 The Authors. Australian Dental Journal published by John Wiley & Sons Australia, Ltd on behalf of Australian Dental Association.)

Background: The SF-6Dv2 is an updated version of the SF-6D, with improved consistency and dimension descriptors, and value sets are required. The aim of this study was to estimate an SF-6Dv2 value set for Australia using an international protocol, while secondary aims were to compare Australian and UK values and to understand heterogeneity., Methods: The study design was based on the SF-6Dv2 valuation protocol, which involved the administration of two different discrete choice experiment (DCE) tasks. The first task presented pairs of SF-6Dv2 health states with duration (Design 1), and the second task presented triplets that appended 'immediate death' to the health state pairs (Design 2). Respondents completed 12 choice sets online (10 from Design 1; 2 from Design 2). Value sets were estimated for Design 1 separately and combining Designs 1 and 2 using a variety of logit model specifications. Value set characteristics were compared descriptively with the UK model., Results: The sample included 3001 Australians. A range of ordered and consistent models were estimated. The models only including Design 1 data resulted in a relatively wider utility range. The value range was reduced by an interaction added when the health state included a dimension with a severe level. The model matched with the UK value set resulted in a larger utility range and consistent ordering of the most important dimensions., Conclusion: The model including the Design 1 data and moderating interaction was chosen for the Australian value set. This allows the SF-6Dv2 to be used in health technology assessment decision making in Australia., (© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Objective: Existing gene panels were developed to understand the etiology of epilepsy, and further benefits will arise from an effective pharmacogenomics panel for personalizing therapy and achieving seizure control. Our study assessed the cost-effectiveness of a pharmacogenomics panel for patients with drug-resistant epilepsy, compared with usual care., Methods: A cost-utility analysis was employed using a discrete event simulation model. The microsimulation model aggregated the costs and benefits of genetically guided treatment versus usual care for 5000 simulated patients. The 10-year model combined data from various sources including genomic databases on prevalence of variants, population-level pharmaceutical claims on antiseizure medications, published long-term therapy retention rates, patient-level cost data, and systematic reviews. Incremental cost per quality-adjusted life-year (QALY) gained was computed. Deterministic and probabilistic sensitivity analyses were undertaken to address uncertainty in model parameters., Results: The mean cost of the genetically guided treatment option was AU$98 199 compared with AU$95 386 for usual care. Corresponding mean QALYs were 4.67 compared with 4.28 for genetically guided and usual care strategies, respectively. The incremental cost per QALY gained was AU$7381. In probabilistic sensitivity analyses, the incremental cost per QALY gained was AU$6321 (95% uncertainty interval = AU$3604-AU$9621), with a 100% likelihood of being cost-effective in the Australian health care system. The most influential drivers of the findings were the monthly health care costs associated with reduced seizures, costs when seizures continued, and the quality-of-life estimates under genetically guided and usual care strategies., Significance: This early economic evaluation of a pharmacogenomics panel to guide treatment for drug-resistant epilepsy could potentially be cost-effective in the Australian health care system. Clinical trial evidence is necessary to confirm these findings., (© 2022 International League Against Epilepsy.)

Purpose: The purpose of this paper is to investigate the presence of bladder and bowel symptoms in women recently imprisoned in Western Australian prisons, specifically; stress, urge and mixed urinary incontinence, faecal incontinence, nocturia, nocturnal enuresis and constipation and the impact on the quality of life (QOL)., Design/methodology/approach: Over a 12-month period 29 women, recently released from Western Australia's female prisons, were surveyed using a questionnaire previously validated for the prison population. The Short Form King's Health Questionnaire and a modified version of the Manchester Health Questionnaire were used to assess the effects of these symptoms on QOL., Findings: Of those surveyed only one respondent reported having no bladder or bowel symptoms following release from prison. Trends assessed by Chi-square analysis suggest women imprisoned for any period of time are more likely to develop both bladder and bowel symptoms which persist after release back into the community. A history of substance or alcohol abuse is often concurrent with the presence of symptoms. QOL scores are also lower for those reporting either bladder or bowel symptoms affecting total scores and the domains of both activities of daily living and mental health., Originality/value: Women imprisoned for any length of time developed bladder and bowel symptoms which had a negative impact on their QOL. Larger studies need to be conducted to investigate these trends and whether small changes in conservative measures can influence outcomes., (© Emerald Publishing Limited.)

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., (©2021 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)

Background: Persistent pelvic pain affects between 10-20% of women with a significant impact on their physical and mental health, sexual relationships, families and society. Estimates of the cost to women and the community is over $9 billion/annum. Although endometriosis is considered a leading cause of pelvic pain, no symptoms reliably allow the identification of those with and without endometriosis. Furthermore, the significance of mild endometriosis is now debated. The optimal clinical approach for pelvic pain and endometriosis remains unclear, with increasing evidence of other contributing factors such as central sensitisation. Studies to date have significant limitations due to their sample size, relatively short follow-up, and inclusion of only women with laparoscopically identified endometriosis., Aims: To undertake a real-world study of women referred with pain to gynaecology outpatients of a women's hospital and explore factors influencing three-year outcomes., Materials and Methods: Five hundred women will be randomised to one of two gynaecology units. The units will provide routine clinical care but their approaches to management of women with pelvic pain and endometriosis differ: one with skilled endoscopic gynaecologists has greater emphasis on surgery, the other, gynaecologists have more medical expertise in managing pain and menstrual problems. Participants will complete six-monthly questionnaires regarding pain and quality of life for three years. This information will not be available to clinicians. Their medical care will be followed from their medical records. The cost of outpatient care and admissions will be calculated. Data will be analysed using STATA software with appropriate post hoc tests. Australian and New Zealand Clinical Trials Registry (ANZCTR:ACTRN12616000150448)., (© 2021 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

Older Australians may live up to 10 years in ill health, most likely chronic disease-related. Those with multimorbidity report more healthcare visits, poorer health and take more medications compared with people with a single chronic disease. They are also at higher risk of hospital admission and poor quality of life. People living with multimorbidity are considered to have "complex care" needs. A person-centred approach to healthcare has led to increasing use of in-home nursing support, enabling older people to receive care at home. Our prospective observational study describes the profile and management of home-based care for older people with complex care needs and examines changes in their quality of life over 12 months. Routinely collected data were analysed, including demographics, medical history, medications and the visit activity of staff providing care to participants. Additional health-related quality of life and hospitalisation data were collected via quarterly surveys and analysed. Fifty-two participants (mean age 76.6 years, 54% female) with an average of eight diagnosed health conditions, received an average of four home care visits per week. Almost half the participants were hospitalised once during the 12-month period and experienced a significant decline in overall quality of life and in the dimensions measuring independent living and relationships over the study period. If ageing in place with good quality of life is to be realised by older adults with multimorbidity, support services including home nursing need to consider both the biomedical and social determinants perspectives when addressing health and social care needs., (© 2022 John Wiley & Sons Ltd.)

Aim: To analyse the current status and publication trends of funded studies in nursing-related research from 2008 to 2018, available in the Web of Science., Design: A longitudinal bibliometric analysis of publications of funded studies in nursing-related research, obtained from the Web of Science, was conducted., Methods: On 10 May 2019, we accessed 77,772 funded studies (2008-2018) from the Web of Science. Bibliometric methods and indicators were used to classify the publications and summarize the overall number, countries/regions, institutions, journals, and other parameters of the publications., Results: The global output of nursing-related funded research publications increased significantly over time. The three leading countries with the highest number of funded publications were the United States, Australia, and the United Kingdom, with the United States accounting for 15 of the top 20 institutions associated with funded publications, which mostly included institutions of higher education. The most common disciplines of these publications were oncology, psychiatry, and paediatrics. The top three journals that published the largest number of nursing-related funded publications were the Journal of Clinical Nursing, the Journal of Advanced Nursing, and the International Journal of Nursing Studies. Keywords with the highest frequency of occurrence included "nurses," "qualitative research," "older people," "quality of life," "depression," "cancer," and "children.", Conclusions: Nursing-related research has been drawing increasing attention over the years. Analysing the output of funded publications and monitoring the new dynamics of the international development of academic research in the field of nursing are crucial for determining future directions of nursing-related research development., Impact: The results of this study will provide a reference for scholars to evaluate the current utilization efficiency of global nursing-related research funding and demonstrate the development and trends in nursing-related research., (© 2020 John Wiley & Sons Ltd.)

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/m 2 ), normal weight (18.5-24.9 kg/m 2 ), overweight (25-29.9 kg/m 2 ) and obese (≥ 30 kg/m 2 ). We used linear mixed-effects regression models to investigate the associations between change in BMI (kg/m 2 ) 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.

Purpose: Physical health-related quality of life (HRQoL) is associated with adverse health outcomes, including hospitalizations and all-cause mortality. However, little is known about how physical HRQoL changes over time in older people and the predictors of this trajectory. This study (a) identified trajectories of physical HRQoL among older people and (b) explored whether economic factors, social health or stressful life events impact physical HRQoL trajectories., Method: A cohort of 12,506 relatively 'healthy' community-dwelling Australians aged ≥ 70 years (54.4% females), enrolled in the ASPREE Longitudinal Study of Older Persons (ALSOP) study and was followed for six years. Economic factors, social health and life events in the last 12 months were assessed through a questionnaire at baseline. Physical HRQoL was measured by using the 12-item short form at baseline and annual follow-ups. Growth mixture and structural equation modelling were used to identify physical HRQoL trajectories and their predictors., Results: Four physical HRQoL trajectories were identified-stable low (7.1%), declining (9.0%), stable intermediate (17.9%) and stable high (66.0%). Living in more disadvantaged areas, having a lower household income, no paid work, no voluntary work, loneliness and stressful life events (i.e. spousal illness, friend/family illness, financial problem) were associated with a 10%-152% higher likelihood of being in the stable low or declining physical HRQoL trajectory than the stable high group., Conclusion: Specific stressful life events had a greater impact on adverse physical HRQoL trajectories in older people than other factors. Volunteering may prevent physical HRQoL decline and requires further investigation., (© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Objectives: To assess the impact of a Consumer Directed Care (CDC) model of service delivery on the quality of life of older people receiving home care packages., Methods: Quality of life was assessed using validated instruments. The relationship between quality of life and length of time exposed to CDC was examined using descriptive statistical and multivariate regression analyses., Results: Consenting older adults (n = 150) in receipt of home care packages participated. Quality of life and capability scores were higher for older people in receipt of a CDC model of service delivery for <12 months compared to those receiving the model of care for longer, although this difference was not statistically significant. However, older people with more recent exposure to CDC indicated a stronger capability to do things that made them feel valued., Conclusion: Extended longitudinal follow-up is needed to facilitate a detailed examination of the relationship between the evolution of CDC and its longer-term influences on quality of life., (© 2021 AJA Inc.)

Objective: Patient-reported outcomes of health-related quality-of-life (HRQoL) are important descriptors of population health. A recent Australian adolescent population survey provided a unique opportunity to derive preference-based HRQoL., Methods: Data from 2967 adolescents aged 11-17 years were analysed. An interviewer-led parent/carer questionnaire was administered for demographic variables and mental disorders of adolescents during previous 12 months using the Diagnostic Interview Schedule for Children. A self-report survey was administered to derive HRQoL using the child health utility nine-dimensions instrument (CHU-9D). Weighted HRQoL was derived for several demographic groups, mental disorder diagnosis, and youth risk behaviours., Results: The total population had a mean utility of 0.78 [standard deviation (SD): 0.20]. Males had a significantly higher mean utility (0.81, SD 0.18) than females (0.76, SD: 0.21) (Cohen's d = 0.23, p < 0.001), and utility decreased with age for both males and females (p < 0.001). Family type and some parent/carer variables were associated with significant lower HRQoL scores with small effect size. Youth risk behaviours were associated with reduced HRQoL with moderate effect sizes. Adolescents who self-harmed, had suicidal ideation, or had a mental disorder had significantly lower utilities scores with moderate to large effect sizes compared to those who did not have such conditions., Conclusions: This study has provided contemporary Australian population norms for HRQoL in adolescents that may be used as cross comparison between studies as well as indicators allowing estimation of population health (e.g. estimation of the burden of disease) and can be used to populate future economic models., (© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Objective: To trial collecting patient-reported outcome measures (PROMs) to assess psychosocial outcomes in men with prostate cancer (PC)., Methods: A cross-sectional postal survey was sent to three groups of 160 men with PC (6, 12 and 24 months post-initial treatment; n total  = 480), through the South Australian Prostate Cancer Clinical Outcomes Collaborative (SAPCCOC) registry (2017). Outcomes were as follows: response rate, completeness, general and disease-specific quality of life, distress, insomnia, fear of recurrence, decisional difficulties and unmet need., Results: A response rate of 57-61% (n = 284) was achieved across groups. Data completeness was over 90% for 88% of survey items, with lower response (76-78%) for EPIC-26 urinary and sexual functioning subscales, sexual aid use (78%) and physical activity (68%). In general, higher socio-economic indicators were associated with higher completion of these measures (absolute difference 12-26%, p < 0.05). Lower unmet need on the sexuality domain (SCNS-SF34) was associated with lower completion of the EPIC-26 sexual functioning subscale [M (SD) = 12.4 (21.6); M (SD) = 26.3 (27.3), p < .001]. Worse leaking urine was associated with lower completion of urinary pad/diaper use question (EPIC-26) [M (SD) = 65.9 (26.5), M (SD) = 77.3 (23.9), p < .01]., Conclusion: Assessment of psychosocial PROMs through a PC registry is feasible and offers insight beyond global quality of life assessment, to facilitate targeting and improvements in services and treatments., (© 2020 John Wiley & Sons Ltd.)

Background Attaining a good quality of life (QOL) is a priority for people living with HIV (PLHIV). We explored the interaction between QOL and the associated demographic, behavioural and clinical factors for PLHIV attending an outer-metropolitan clinical setting in Western Sydney, Australia. The clinic's cohort of PLHIV is characterised by relatively high proportions of women, heterosexual men, and patients from culturally and linguistically diverse (CALD) communities. Methods We assessed QOL using the PozQol tool that is specifically designed for PLHIV. QOL scores and de-identified socio-demographic and clinical data were extracted from the electronic and paper medical records of PLHIV who completed a PozQol tool (September 2020-March 2022). We performed descriptive analyses and logistic regression to identify associations. Results Among 188 patients, there were 77.7% men, 21.3% women, 1.1% transwomen; 67.0% were born overseas, 85.1% spoke English, 84.4% were Medicare-eligible, 85.9% were employed, 58.5% were diagnosed with HIV 6-20years ago, and 33.0% within the past 5years. Overall, 58.0% had a high or very high QOL. A low score in any domain was associated with Medicare-ineligibility. Low QOL scores in specific domains were associated with the following factors: health (being born overseas, having partners of both sexes), psychological (unemployment, having a mental health condition, having a viral load >20 copies/mL), social (unemployment), and functional (Medicare-eligibility, unemployment, having a viral load >20 copies/mL). Conclusions The PozQol tool has enhanced understanding of factors impacting on QOL for PLHIV attending our service in Western Sydney. Identifying patients with low QOL scores allows targeted clinical interventions to improve QOL, and re-alignment of clinical services to better support PLHIV.

Purpose: To estimate SF-6D utility scores for older women with atrial fibrillation (AF); calculate and compare mean utility scores for women with AF with various demographic, health behaviours, and clinical characteristics; and develop a multivariable regression model to determine factors associated with SF-6D utility scores., Methods: This study evaluated N = 1432 women diagnosed with AF from 2000 to 2015 of the old cohort (born 1921-26) of the Australian Longitudinal Study on Women's Health (ALSWH) who remained alive for at least 12 months post first recorded AF diagnosis. Self-reported data on demographics, health behaviours, health conditions, and SF-36 were obtained from the ALSWH surveys, corresponding to within three years of the date of the first record of AF diagnosis. Linked Pharmaceutical Benefits Scheme (PBS) data determined the use of oral anticoagulants and comorbid conditions, included in CHA 2 DS 2 -VA (Congestive heart failure, Hypertension, Age ≥ 75 years, Diabetes, Stroke or TIA, Vascular disease and Age 65-74 years) score calculation, were assessed using state-based hospital admissions data. Utility scores were calculated for every woman from their SF-36 responses using the SF-6D algorithm with Australian population norms. Mean utility scores were then calculated for women with various demographic, health behaviours, and clinical characteristics. Ordinary Least Square (OLS) regression modelling was performed to determine factors associated with these utility scores. Two different scenarios were used for the analysis: (1) complete-case, for women with complete data on all the SF-36 items required to estimate SF-6D (N = 584 women), and (2) Multiple Imputation (MI) for missing data, applied to missing values on SF-36 items (N = 1432 women). MI scenario was included to gauge the potential bias when using complete data only., Results: The mean health utility was estimated to be 0.638 ± 0.119 for the complete dataset and 0.642 ± 0.120 for the dataset where missing values were handled using MI. Using the MI technique, living in regional and remote areas ([Formula: see text]) and the use of oral anticoagulants ([Formula: see text] were positively associated with health utility compared to living in major cities and no use of anticoagulants, respectively. Difficulty to manage on available income [Formula: see text], no/low physical activity [Formula: see text], disability [Formula: see text], history of stroke ([Formula: see text] and history of arthritis [Formula: see text] were negatively associated with health utility., Conclusion: This study presents health utility estimates for older women with AF. These estimates can be used in future clinical and economic research. The study also highlights better health utilities for women living in regional and remote areas, which requires further exploration.

Background and Aims: The Australian Treatment Outcomes Profile (ATOP) is a brief instrument measuring recent substance use, risk profile and general health and wellbeing among clients attending alcohol and other drug (AoD) treatment services. This study evaluates the ATOP for concurrent validity, inter-rater and test-re-test reliability among alcohol and opioid treatment groups., Design: For concurrent validity and inter-rater reliability, participants completed an ATOP with a clinician and an ATOP plus standardized questionnaires (time-line follow-back, Opiate Treatment Index, Kessler-10, 12-item Short Form Survey, World Health Organization Quality of Life-BREF, Personal Wellbeing Index) with a researcher within 3 days. For test-re-test reliability, participants completed two ATOPs with a researcher within a 3-day interval., Setting: Outpatient AoD treatment centres in Australia., Participants: For testing concurrent validity and inter-rater reliability, 278 participants were recruited by advertisements in waiting-rooms or clinician invitation during 2016 to 2018. A further 94 participants were recruited to examine test-re-test reliability., Measurements: Statistical tests used for concurrent validity and test-re-test reliability were Pearson's and Spearman's rank order correlations for continuous variables, and Cohen's κ for nominal variables. Inter-rater reliability was assessed using Krippendorf's α., Findings: Most Australian Treatment Outcomes Profile items returned excellent or moderate validity and reliability. For the main substances used-alcohol, cannabis and benzodiazepines-concurrent validity, inter-rater reliability and test-re-test reliability all reached excellent or good agreement (0.72-0.96). Psychological health, physical health and quality of life showed fair to strong agreement with their comparator scales (0.47-0.85)., Conclusions: The Australian Treatment Outcomes Profile is a validated and reliable instrument for assessing recent substance use and clinical risk, health and welfare among alcohol and opioid clients in alcohol and other drug treatment settings. Its ability to reliably measure complex constructs, such as psychological and physical health, against longer scales makes it suitable for integration into routine clinical care, enabling regular monitoring of patient outcomes and safety parameters., (© 2020 Society for the Study of Addiction.)

Background: With expected increases in the number of older adults worldwide, the delivery of stepped psychological care for depression and anxiety in older populations may improve both treatment and allocative efficiency for individual patients and the health system., Design: A multisite pragmatic randomised controlled trial evaluating the clinical and cost-effectiveness of a stepped care model of care for treating depression and anxiety among older adults compared to treatment as usual (TAU) will be conducted. Eligible participants (n = 666) with clinically interfering anxiety and/or depression symptoms will be recruited from and treated within six Australian mental health services. The intervention group will complete a low intensity cognitive behavioural therapy (CBT) program: Internet-delivered or using a work-at-home book with brief therapist calls (STEP 1). Following STEP 1 a higher intensity face-to-face CBT (STEP 2) will then be offered if needed. Intention-to-treat analyses will be used to examine changes in primary outcomes (e.g. clinician-rated symptom severity changes) and secondary outcomes (e.g. self-reported symptoms severity, health related quality of life and service utilisation costs). An economic evaluation will be conducted using a cost-utility analysis to derive the incremental cost-effectiveness ratio for the stepped care intervention., Discussion: This study will demonstrate the relative clinical and economic benefits of stepped care model of psychological care for older adults experiencing anxiety and/or depression compared to TAU. The evaluation of the intervention within existing mental health services means that results will have significant implications for the translation of evidence-based interventions in older adult services across urban and rural settings., Trail Registration: Prospectively registered on anzctr.org.au (ACTRN12619000219189) and isrctn.com (ISRCTN37503850)., (Copyright © 2021 Elsevier Inc. All rights reserved.)

The duration and complexity of chronic conditions leads patients to consult complementary medicine (CM) practitioners, yet such care-seeking by this clinical population has not been thoroughly examined. This study describes characteristics and reasons for consultation amongst those with chronic conditions who consult CM practitioners. A cross-sectional study surveyed patients in clinics of 39 CM practitioners from the five most accessed CM professions in Australia (chiropractic, massage, osteopathy, acupuncture, naturopathy). Between November 2018 and March 2019, CM practitioners invited 15 consecutive adult patients (n = 585 invited) to a self-administered, hard-copy survey covering socio-demographics, chronic condition diagnoses, CM service utilisation and reasons for consulting the CM practitioner. In total, 199 surveys were returned, producing a final sample of n = 191. Chronic conditions were reported by 153 (80.1%) participants, who were most commonly female (82.4%), aged over 65 years (29.0%), married (55.9%), vocational/trade qualified (40.1%), employed (62.5%), reported financial manageability as not too bad (48.0%), held private health insurance generally (79.0%) and specifically for CM (71.1%). Some socio-demographic differences were found depending on the profession consulted. Most participants (75.0%) had attended five or more consultations with the CM practitioner. The reasons most commonly given by participants with chronic conditions for consulting the CM practitioner were This healthcare professional is supportive and compassionate (n = 136, 97.1%), I believe this type of healthcare is safe (n = 131, 95.6%), Improve general wellbeing and prevent future health problems (n = 125, 89.3%) and This type of healthcare gives me hope about my future health (n = 108, 85.7%). These findings suggest that individuals with chronic conditions may consult CM practitioners to address unmet well-being or quality of life needs and for compassionate support. The role CM practitioners fill for those with chronic conditions requires further exploration to develop optimal policy and services to manage the growing challenges chronic conditions present to health systems., (© 2020 John Wiley & Sons Ltd.)

Renal supportive care (RSC) is an approach integrating nephrology and palliative care to improve quality of life for people with chronic kidney disease (CKD). RSC practice varies across services; therefore, understanding clinicians' perspectives is important to the evolution and definition of RSC., Aim: To understand renal clinicians' views and experiences of RSC, palliative care and end-of-life care., Method: A cross-sectional online survey was undertaken across Australia and New Zealand between February and May 2018. Participants were asked about end-of-life care, RSC, palliative care and an ideal model of RSC., Results: Estimated response rate 13% included 382 clinicians; doctors (32%), nurses (68%); of whom 84% access specialist palliative care and 59% RSC. A lack of agreed treatment goals (86%) and late or rushed treatment decision making (85%) was associated with challenging end-of-life experiences. Variable concepts of RSC were described, with RSC being considered the same as: usual care for all CKD patients (40%), conservative (30%) or palliative care (22%). The term RSC was generally distinct from (77%) and more acceptable than palliative care (80%) with preferential RSC referral for symptoms (86% vs 69%, P < .01) and complex treatment decision making (82% vs 58%, P < .01). Aspirations for RSC included improving symptoms and quality of life (89%), with an ideal model comprising: symptom management (98%), improved nephrology and community service integration (96%) and clinician education (94%)., Conclusion: This study revealed challenges for renal clinicians in providing end-of-life care and variation of views and experiences of RSC. It represents opportunities to develop RSC aligned with clinician priorities to improve patient care., (© 2020 Asian Pacific Society of Nephrology.)

Background: There is wide acknowledgement in the literature that social connection is protective against loneliness and depression. More robust research, however, is needed to evaluate interventions that promote social connection. This protocol paper outlines the evaluation of a community-wide social connection program, Connect Local , in metropolitan Melbourne, Australia to support people 65 years and older to increase access to local community services/activities; and to ascertain impact on social connection, loneliness, depressive symptoms, physical and mental wellbeing, and use of health services., Methods: A Type 1 Hybrid design, including program effectiveness, cost-effectiveness, and implementation evaluation of the Connect Local program, will be undertaken. Eighty-eight participants aged ≥65 years with one or more chronic health condition, who are also either experiencing or at risk of loneliness, social isolation and depressive symptoms will be invited to participate in the evaluation. Outcomes, measured at baseline, 3, 6 and 12 months, include loneliness, social isolation, depressive symptoms, social anxiety, goal attainment, wellbeing, quality of life and health care utilisation. A gender and age matched comparator group of 88 individuals will be recruited from outside the intervention local government area. Impact of the intervention on community service providers in the target region will be evaluated using mixed methods, where triangulation will be used to combine the qualitative and quantitative data using a deductive-simultaneous design. Changes in wellbeing and quality of life of community volunteers will also be measured. All groups will be interviewed to ascertain their experience and perceptions of the program. The economic evaluation will use a Social Return on Investment (SROI) approach, to include outcomes at the individual, community, and system levels. Implementation outcomes will consider Reach, Adoption, Feasibility, Acceptability, Appropriateness, Fidelity, and Sustainability of the intervention., Discussion: This study will provide a better understanding of the impacts of a community-wide social connection approach in older adults, the community and broader system., Clinical Trial Registration: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=385192; Identifier ACTRN12623000968673., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer AJ declared a shared affiliation with the author(s) ML to the handling editor at the time of review., (Copyright © 2024 Ogrin, Robinson, Rendell, Alrababah, Fineberg, Fiddes, Yerolemou, Lim, Engel and Lowthian.)

Background and Objective: Patients with heart failure experience high hospitalization. However, patients cannot recognize symptoms according to current approaches, which needs to be improved by new self-monitoring instruments and strategies. Thus, we aimed to assess a self-monitoring traffic light diary on outcomes of patients with heart failure., Methods: This was a single-blind, two-arm parallel group randomized controlled trial at the heart failure clinic of Tehran Heart Center (Tehran, Iran). Adult patients with a definitive diagnosis of heart failure with reduced ejection fraction (i.e., ejection fraction of less than 40 %), and New York Heart Association functional classes II-IV were included. A block-balanced randomization method was used to assign eligible subjects to the intervention or control group. Baseline data were collected before random allocation. Participants in the intervention group received a comprehensive intervention consisting of (1) self-care education by an Australian Heart Foundation booklet on heart failure, (2) regular self-monitoring of weight and shortness of breath at home, and (3) scheduled call follow-ups for three months. Patients in the control group received usual care. The primary outcome was heart failure self-care; the secondary outcomes were heart failure quality of life, knowledge, and all-cause hospitalization., Results: From June to August 2017, 68 patients were included in the study. The overall age of participants was 55 (13.6) years old, and 71 % of patients were male. A significant association between the intervention and self-care maintenance (β 5.1; 95 % CI 2.50 to 7.70, P < 0.001), self-care management (β 10.6; 95 % CI 6.50 to 14.8, P < 0.001), self-care confidence (β 8.0; 95 % CI 5.0 to 11.0, P < 0.001) and heart failure knowledge (β 1.7; 95 % CI 1.30, 2.04; P < 0.001) was found. However, there was no association between the intervention and quality of life (β 2.5; 95 % CI -0.79, 5.88, P 0.135) and hospitalization-free survival of the two groups (Log-Rank P 0.540)., Conclusion: A self-monitoring traffic light diary can improve self-care behaviors and heart failure knowledge in patients with heart failure with reduced ejection fraction., Rct Approval Id: Iranian Registry of Clinical Trials IRCT2017021032476N1., Study Protocol: PMCID: PMC6262204., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Background/objectives: Diet is important in healthy ageing. Protein is essential for physical function, immunity, maintaining quality of life and ability to live independently., Subjects/methods: Protein intakes, sources and the protein content of meals and snacks among adults aged ≥65 years from the 1995 National Nutrition Survey (n = 1960) and the 2011/12 National Nutrition and Physical Activity Survey (n = 2103) were examined. Usual protein intakes were estimated using the National Cancer Institute method, and intakes and adequacy were compared between the two surveys., Results: Participants reported a higher total protein intake in 2011/12 than 1995 (81.0 vs. 73.4 g, p < 0.001). Mean protein intake per kg body weight (1995, 1.0 g/kg vs. 2011/12, 1.1 g/kg) and ability to meet the Australian (1995, 85% vs. 2011/12, 88%) and World Health Organisation (1995, 90% vs. 2011/12, 94%) protein requirements increased over time. Males >70 years or those with poor self-assessed health status were more likely to report inadequate protein intake compared with other respondents. Higher protein intake was associated with greater consumption of vegetables, fruit, dairy products, meat and alternatives and lower consumption of discretionary foods and alcohol. Participants obtained 17% of their protein intake from breakfast, 30% from lunch, 43% from dinner and 10% from snacks. Main protein sources included lean red meat, poultry and full cream milk., Conclusion: Specific dietary advice for older Australians, particularly older men and those with poor health, to promote healthy food choices with adequate protein content is needed for disease prevention and maintenance of quality of life.

Objective: Few patient-reported outcome measures (PROMs) have been developed that adequately measure the patient-experience following diagnosis and treatment of melanoma. Building on previous research, which developed the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Module (QLQ-MEL38), the aim of this study was to further test the hypothesised domain structure and psychometric properties of the phase 3 module, in a new larger sample of melanoma patients., Methods: Melanoma patients (n = 270) were recruited from four countries (Australia, England, Serbia, and Spain). Patients completed the EORTC core questionnaire (QLQ-C30), the QLQ-MEL38, and a sociodemographic survey. Using this new larger dataset, comparisons were made with the hypothesised domain structure of the EORTC phase 3 module using principal component analysis. Items which formed subscales in a revised domain structure were then tested for goodness of fit (GoF) to the Rasch model., Results: The original hypothesised and final domain structures were similar but not identical. Twenty-four items (83%) loaded onto the same distinct subscales previously generated by phase 3, and item-by-item comparison of the two pattern matrices indicated an extremely close match. Ten items were removed from the QLQ-MEL38 phase 3 module, and rescoring of some items was required. Four subscales, together with five individual items, comprised the final instrument., Conclusion: The newly developed measure (named the Melanoma Concerns Questionnaire; MCQ-28) was found to tap into several important psychosocial domains of concern to melanoma patients, particularly those being managed in "usual" clinic settings., (© 2019 John Wiley & Sons, Ltd.)

Objective: To investigate functional limitations and life satisfaction among Asian-born migrants and Australian-born participants in the Household, Income and Labour Dynamics in Australia (HILDA) study., Methods: Information on 10 167 Australian-born participants and 650 Asian-born migrants from Waves 6 to 16 (2006-2016) of HILDA was analysed using multivariate linear regressions, adjusting for baseline covariates., Results: Middle-aged and older Asian-born migrants had a lower decline in functional limitations compared to the Australian-born participants (-1.74 vs -4.47 during the 5-year period and -5.66 vs -8.50 during the 10-year period). Decline in life satisfaction scores was relatively stable among older Australian-born participants, but there was a steeper decline among Asian-born migrants in the 5-year period. Notably, relative change was not statistically significant for both outcomes., Conclusion: This study reveals that middle-aged and older Asian-born migrants had less decline in physical health but not in life satisfaction. Monitoring health and well-being of migrants as they age could help to minimise health disparities in Australia., (© 2019 AJA Inc.)

Anxiety is now recognized as one of the most common conditions that co-occur with autism. While there has been increased research describing the typical and autism-specific anxiety symptomatology and assessing the effectiveness of potential interventions, there has been less research exploring the impact that elevated anxiety may have on an individual and their quality of life (QoL). This study aimed to explore the impact of anxiety on the QoL in children on the autism spectrum. Children and young adolescents on the spectrum were invited to participate in a self-report study measuring anxiety and health-related QoL (HRQoL). The sample consisted of 71 children, aged 6-13. Children who scored above the cut off for elevated anxiety on the autism-specific measure of anxiety (ASC-ASD) had poorer total HRQoL and poorer scores on the social, emotional, physical, and school functioning QoL domains. Regression analyses indicate that children's self-reported ratings of difficulties with uncertainty on the ASC-ASD predicted all domains of HRQoL, with higher levels of difficulty with uncertainty predicting poorer HRQoL. Elevated levels of anxious arousal were also predictive of poorer physical functioning. This study highlights the importance of exploring the impact of anxiety on individuals on the spectrum and suggests that using carefully planned interventions to reduce difficulties with uncertainty may be a potential way to work toward improving the QoL of children on the spectrum. Autism Res 2019, 12: 1505-1515. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Research has shown us that individuals on the autism spectrum are more likely to have poor "quality of life" or general well-being. Because many individuals with a diagnosis on the autism spectrum also receive a diagnosis of anxiety, this study looked at whether a child's autism symptoms or their anxiety have a bigger impact on their quality of life. Children on the autism spectrum completed questionnaires and the results showed us that one factor, difficulty with uncertainty, had the biggest impact on the child's quality of life., (© 2019 International Society for Autism Research, Wiley Periodicals, Inc.)

In the residential aged care sector medication management has been identified as a major area of concern contributing to poor outcomes and quality of life for residents. Monitoring medication management in residential aged care in Australia has been highly reliant on small, internal audits. The introduction of electronic medication administration systems provides new opportunities to establish improved methods for ongoing, timely and efficient monitoring of a range of medication indicators, made more meaningful by linking medication data with resident characteristics and outcomes. Benchmarking contemporary medication indicators provides a further opportunity for improvement and is most effective when indicator data are adjusted to take account of confounding factors, such as residents' characteristics and health conditions. Roundtables provide a structure for sharing and discussing indicator data in a trusted and supportive environment and encourage the identification of strategies which may be effective in improving medication management. This paper describes a new project to establish, implement and evaluate a National Aged Care Medication Roundtable.

Background and Objectives: Little is known about elements of long-term care (LTC) that promote quality of life (QoL) for older Indigenous and First Nations peoples. This systematic review aimed to extend understanding of those deemed most important., Research Design and Methods: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, systematic database and hand-searching were used to find published and unpublished qualitative studies and textual reports. A convergent integrated approach was used to synthesize data, according to the Joanna Briggs Institute methodology for mixed methods systematic reviews., Results: Included papers (11 qualitative; seven reports) explored views and experiences of Indigenous residents, families, and LTC staff from North America (8), South Africa (1), Norway (1), New Zealand (1), and Australia (7). Elements of care included: (a) codesigning and collaborating with Indigenous and First Nations communities and organizations to promote culturally safe care; (b) embedding trauma-informed care policies and practices, and staff training to deliver culturally safe services; (c) being respectful of individual needs, and upholding cultural, spiritual and religious beliefs, traditional activities and practices; (d) promoting connection to culture and sense of belonging through sustained connection with family, kin, and Indigenous and First Nations communities., Discussion and Implications: This review identifies elements or models of care that promote QoL for Indigenous and First Nations peoples in LTC. While included papers were mostly from the United States and Australia, the congruence of elements promoting QoL was evident across all population groups. Findings may be used to inform standards specific to the care of Indigenous and First Nations peoples., (© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background: Regular methamphetamine use can cause a range of physical, psychological and social harms. Stigma is one factor that impacts engagement and successful completion of treatment. In Australia, Aboriginal and Torres Strait Islander people who regularly use methamphetamine experience multiple stigmas, which further compounds access to treatment and quality of life. This paper explores the cumulative and compounding effects of participating in a stigmatised activity such as illicit drug use in relation to the stigma experienced by Aboriginal and Torres Strait Islander people as a population marginalised through colonisation., Methods: Ten sites nationally participated in a cross-sectional survey measuring a range of factors including psychosocial stress in methamphetamine users. The survey sample size was 734, with 59% identifying as Aboriginal and Torres Strait Islander (n = 433). In addition, a total of 147 mainly Aboriginal and Torres Strait Islander people who use methamphetamine, community and family members, and service providers took part in a total of 19 focus groups and 7 interviews., Results: Aboriginal and Torres Strait Islander participants experienced multiple psychosocial stressors at significantly higher rates than non-Indigenous participants. These stressors include diminished access to health care (33%), experiences of racism (34%), grief and sorrow (39%), worry for family (46%), and child welfare experiences (46%). The qualitative findings highlight the cumulative impact of historical, political and social stressors on an already stigmatised population., Conclusions: The findings of this unique analysis demonstrate the disruptive impact of methamphetamine use on the lives of those who use methamphetamines and their family members. They also illustrate challenges, such as stigma, that may confront those seeking assistance for drug-related issues. Aboriginal and Torres Strait Islander community involvement is necessary to provide support and education for the individual, the family, and the community as a whole. Stigma reduction is therefore a worthy target for intervention., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023. Published by Elsevier B.V.)

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., (© 2023. The Author(s).)

Background: Older people in the nursing home environment are much less mobile and capable of taking care of themselves as they age, and most of them face the plight of loneliness, which seriously affects the quality of life of older people in their later years., Aims: A systematic review and synthesis of older people's experiences of loneliness in nursing homes., Design: Following ENTREQ, do a systematic evaluation and synthesis of qualitative investigations., Methods: A search of PubMed, Cochrane Library, Web of Science, Embase, the Chinese biomedical literature service system, the China National Knowledge Infrastructure, the Wanfang Database and the Wipu Database for qualitative studies of older people's experiences of loneliness in nursing homes was conducted with a search time frame of March 2023. Evaluation of the quality of the literature using the Joanna Briggs Institute's Australian Centre for Evidence-Based Health Care Quality Assessment Criteria for Qualitative Research, And the data were synthesised using Thomas and Harden's method of thematic and content analysis., Results: A total of 13 papers were included, and 36 research findings were distilled and integrated into three themes: causes of loneliness; feelings of loneliness; coping with loneliness; and seven sub-themes: aging and loss; environmental transformation; loneliness is a pain; loneliness is a choice; participation; strengthening social ties; and diverting attention., Conclusions: Older people in nursing homes face varying degrees of loneliness, which is a subjective feeling influenced by the interplay between personal awareness and the external environment, so future care interventions should be developed in a comprehensive manner, taking into account the characteristics of the older people themselves and their external environment., No Patient or Public Contribution: This study is a meta-synthesis and does not require relevant contributions from patients or the public., (© 2023 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Purpose : A laryngectomy impacts communication, swallowing and breathing. It is disfiguring and can disrupt quality of life, one's sense of identity, and relationships. It can increase dependence on others, trigger social stigma, avoidant coping and suicidal risk. Qualitative research has the potential to enable greater understanding of these consequences. However, almost nothing has been written about the specific ethical issues that can arise when carrying out research with people with laryngectomy (PWL). This paper builds on the experiences of the authors in the field and seeks to examine and explain these research ethics considerations and how they impact research design, data collection, data analysis and dissemination. Method : Using a framework based on the values underpinning the Australian National Statement on Ethical Conduct in Human Research , respect, merit and integrity, justice and beneficence, we have highlighted key issues relevant to this particular population. Main contribution : Different practical approaches are provided to address the ethical concerns that arise when conducting research with PWL. These include access to participants and ensuring diverse representation; balancing harm and benefit; achieving accurate interpretation, analysis and representation of the data generated through the research; research as a partnership that is respectful, empowering and fosters collaboration. Conclusion : This paper breaks new ground in discussing the ethical considerations and practical challenges relevant to researching the experiences of PWL.

Australia's headspace initiative is world-leading in nation-wide youth mental healthcare reform for young people aged 12 to 25 years, now with 16 years of implementation. This paper examines changes in the key outcomes of psychological distress, psychosocial functioning, and quality of life for young people accessing headspace centres across Australia for mental health problems. Routinely collected data from headspace clients commencing an episode of care within the data collection period, 1 April 2019 to 30 March 2020, and at 90-day follow-up were analysed. Participants came from the 108 fully-established headspace centres across Australia, and comprised 58,233 young people aged 12-25 years first accessing headspace centres for mental health problems during the data collection period. Main outcome measures were self-reported psychological distress and quality of life, and clinician-reported social and occupational functioning. Most headspace mental health clients presented with depression and anxiety issues (75.21%). There were 35.27% with a diagnosis: overall, 21.74% diagnosed with anxiety, 18.51% with depression, and 8.60% were sub-syndromal. Younger males were more likely to present for anger issues. Cognitive behavioural therapy was the most common treatment. There were significant improvements in all outcome scores over time (P<0.001). From presentation to last service rating, over one-third had significant improvements in psychological distress and a similar proportion in psychosocial functioning; just under half improved in self-reported quality of life. Significant improvement on any of the three outcomes was shown for 70.96% of headspace mental health clients. After 16 years of headspace implementation, positive outcomes are being achieved, particularly when multi-dimensional outcomes are considered. A suite of outcomes that capture meaningful change for young people's quality of life, distress and functioning, is critical for early intervention, primary care settings with diverse client presentations, such as the headspace youth mental healthcare initiative., Competing Interests: The funder provided support in the form of salaries, or part thereof, for authors DR, JE, AS, NT, and JT but did not have any additional role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The specific roles of these authors are articulated in the ‘author contributions’ section. These affiliations do not alter our adherence to PLOS ONE policies on sharing data and materials., (Copyright: © 2023 Rickwood et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Early intervention alcohol and drug (AOD) programs for disadvantaged young people have the potential to substantially decrease the need for future intervention, however there is little research about how young people use these programs or the substance use and other outcomes of such programs. This paper uses data from an Australian AOD early intervention program, The Street Universities, to: describe young people's participation; examine changes in substance use and wellbeing over 90 days; and assess which young people are most positively impacted., Methods: Data come from a prospective study of new attendees, measuring retention in and attendance patterns in an 'engagement' program focussed on arts and lifestyle activities (n = 95), and a routine service dataset collected from seven years of therapeutic intervention (n = 3,893), measuring substance dependence (SDS), psychological distress (K10) and quality of life (EQoL)., Results: Analysis reveals that young people were retained in the program at high proportion (63% at six months) and more than half of these returned at a frequency of weekly or more often. Young people participating in the therapeutic component of the program reported significant improvements in all key wellbeing indicators with SDS, K10 and EQoL scores significantly improving (at p < .001). These improvements occurred rapidly, within the first 30 days, and were maintained over the 90 day study period. Moreover, young people with the highest SDS and K10 scores and lowest quality of life at baseline experienced the most positive changes., Conclusion: Aligning engagement program with therapeutic intervention can provide comprehensive support to disadvantaged young people, producing substantial improvements in AOD use, distress and wellbeing., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Caruana et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background/aims: Discrete choice experiments (DCEs) with either duration included an attribute or with dead included as an option can be used as a stand-alone approach to value health states. This paper reports on a DCE with both of these features to develop an EQ-5D-5L value set for Australia., Methods: A DCE was undertaken using a large Australian panel of internet respondents, from which a sample of more than 4000 Australian adults was chosen, stratified to be population representative on age and gender. The DCE contained 500 choice triplets, with two EQ-5D-5L health states with duration, and dead as the third option. Each respondent answered 12 choice sets from the 500, stating both the best and worst options from the three available. The design was constructed to estimate a utility algorithm with main effects plus some key interaction terms. A variety of approaches to parameterising interactions, and to anchoring the value set on the required 0-1 scale, were tested. A preferred Australian adult utility algorithm for use in cost-utility analysis was then generated., Results: In total, 4477 people completed at least one choice set and were included in the analysis. The results reflected the monotonic structure of the EQ-5D-5L, in that moving from no problems to extreme problems led to worsening utility in each dimension. Inclusion of interaction terms demonstrates that the disutility of the first dimension moving to a poor level (defined as either level 5, or level 4 or 5) had a large impact, but subsequent dimensions moving to a poor level had a relatively smaller disutility., Discussion: This work develops a value set for the EQ-5D-5L in Australia, and also provides a range of methodological insights which can inform future work using a stand-alone DCE to value health in other countries., (© 2023. The Author(s).)

This paper reviews the literature to assess the effectiveness of oral health interventions in influencing oral health-related quality of life (OHRQoL) in older adults. Clinical studies published in 2010 onwards reporting oral health interventions in older adults and subsequent changes in OHRQoL were systematically searched in Medline, Web of Science and EMBASE databases. Reporting followed Preferred Reporting Items for Systematic Review and Meta-Analysis criteria. Eligibility evaluation and data abstraction from eligible studies were guided by predefined PICO questions and bias assessment by the Quality in Prognosis Studies tool. The search retrieved 144 articles. Of the 20 articles that met the eligibility criteria, 45% (9) reported a statistically significant improvement in OHRQoL. The majority of studies were conducted in adults with complete edentulism (70%) and mainly focused on implant provision to support a removable prosthesis (30%). The search indicates the limited scope of current literature on geriatric dental interventions, focusing mainly on denture realignments, denture fabrication and implant placement. Although the majority of the oral health interventions focused on edentulism and removable prostheses, there are many areas of oral health interventions and their potential impact on OHRQoL in this demographic group that have yet to be explored. © 2022 Australian Dental Association., (© 2022 Australian Dental Association.)

Objective: This paper reports on the valuation of the classification system for the Quality-of-Life Aged Care Consumers (QOL-ACC) instrument using a discrete choice experiment (DCE) with duration with a large sample of older people receiving aged care services., Methods: A DCE with 160 choice sets of two quality-of-life state-survival duration combinations blocked into 20 survey versions, with eight choice sets in each version, was designed and administered through an on-line survey to older Australians receiving aged care services in home and via interviewer facilitation with older people in residential aged care settings. Model specifications investigating preferences with respect to survival duration and interactions between QOL-ACC dimension levels were estimated. Utility weights were developed, with estimated coefficients transformed to the 0 (being dead) to 1 (full health) scale to generate a value set suitable for application in quality assessment and for the calculation of quality-adjusted life-years for use in economic evaluation., Results: In total, 953 older people completed the choice experiment with valid responses. The estimation results from econometric model specifications indicated that utility increased with survival duration and decreased according to quality-of-life impairment levels. An Australian value set (range - 0.56 to 1.00) was generated for the calculation of utilities for all QOL-ACC states., Conclusion: The QOL-ACC is unique in its focus on measuring and valuing quality of life from the perspective of older people themselves, thereby ensuring that the preferences of aged care service users are the primary focus for quality assessment and economic evaluation., (© 2022. The Author(s).)

Background: Mealtimes are embedded routines of residents living in residential aged care facilities (RACFs) that directly impact their health and quality of life. Little is known about how mealtime experiences are informed and affected by structures such as government and organisational policies and processes. This scoping review used Giddens' (The constitution of society: outline of the theory of structuration, 1984) Structuration Theory to investigate how governance structures related to mealtime practices inform residents' mealtime experiences., Methods: Using Arksey and O'Malley's (Int J Soc Res Methodol 8:19-32, 2005) scoping review framework, a systematic database, grey literature and policy search was completed in May 2020 and updated in July 2021. From 2725 identified articles, 137 articles were included in data charting and deductive analysis, and 76 additional Australian government policy papers were used interpretatively., Results: Data charting identified that the included studies were prominently situated in Western countries, with a progressive increase in publication rate over the past two decades. Qualitative findings captured structures that guide RACF mealtimes, how these relate to person-centred mealtime practices, and how these facilitate residents to enact choice and control., Conclusions: Current policies lack specificity to inform the specific structures and practices of RACF mealtimes. Staff, residents, organisational and governance representatives possess different signification, legitimation and domination structures, and lack a shared understanding of policy, and how this influences processes and practices that comprise mealtimes., (© 2022. The Author(s).)

Background: Visual impairment is rare but has significant impact on the neurobehavioural development and quality of life of children. This paper presents the key findings from the Australian Childhood Vision Impairment Register, which commenced in 2008 to report on children diagnosed with permanent visual impairment., Subjects/methods: Families consent to completing a data form related to their child and for contact with the child's ophthalmologist. Ophthalmologists complete and return a comprehensive data form on the child's primary and secondary ocular diagnoses, associated disabilities and health conditions, visual acuity and visual fields. Data is stored on a secure database and anonymised data is available to researchers and for planning purposes., Results: Nine-hundred four children and their families provided informed consent for participation, with 57% males and 43% females. Most children spoke English in their home. Eighty-three percent of children were born full term, with a birth weight of >2500 g (81%). Children were commonly suspected to have visual impairment by a parent, with 68% of families receiving a diagnosis of visual impairment by their child's first birthday. The most common primary diagnoses were retinal dystrophy (17%), CVI (15%) and Albinism (11%). A secondary diagnosis of infantile nystagmus occurred in 33% of children. Additional disabilities and/or developmental delay were reported for 44% of children. Corrected binocular visual acuity was reported for 75% of children, with moderate visual impairment being most common., Conclusions: These findings contribute to knowledge of rare diseases affecting the eye and visual pathway and represent Australian childhood visual impairment., (© 2021. The Author(s), under exclusive licence to The Royal College of Ophthalmologists.)

Objectives: The EQ-5D-5L and its value sets are widely used internationally. However, in the US and elsewhere, there is growing use of PROMIS, which has a value set (PROPr) based on the stated preferences of the US population. This paper aims to compare the characteristics of EQ-5D-5L and PROPr value sets and to highlight potential implications for users., Methods: US, Australian and English value sets were used for EQ-5D-5L. PROPr utilities were calculated based on PROMIS-29 + 2. We examined, in each case, (i) the characteristics (e.g. range of values, number of unique values) and distribution of all possible 'theoretical' utilities; (ii) dimension/domain importance ranking by the utility of corner states (i.e. health states with the worst level in one domain and the best in all others); (iii) comparisons of utilities for health states hypothesised to be comparable in terms of severity across EQ-5D-5L descriptive systems and PROMIS-29 + 2 domain scores; (iv) the changes in values of adjacent states (i.e. a one-level change in one dimension for EQ-5D-5L and a four-point change in raw scores for PROMIS-29 + 2, with the other dimensions held constant) for dimensions hypothesised to overlap conceptually or be correlated between the two instruments., Results: EQ-5D-5L and PROPr utilities differ systematically. First, the US EQ-5D-5L utilities range from - 0.573 to 1, whereas PROPr values for PROMIS-29 + 2 range from - 0.022 to 0.954. Second, in the US (and English) EQ-5D-5L value sets, pain is the most important dimension whereas in PROPr pain is one of the least important (apart from sleep disturbance). Third, classified based on severity across EQ-5D-5L descriptive systems and PROMIS-29 + 2 domain scores, PROPr has substantially lower values than EQ-5D-5L values for comparable 'mild' health states, but higher values for more 'severe' health states. Last, when one dimension is considered across its best to worst levels and all other dimensions are held constant at their best or moderate level, in EQ-5D-5L value sets, the greatest changes in utility occur between levels 3 and 4 (moderate and severe) problems; in PROPr that occurred between the most severe states and their descriptively adjacent health states., Conclusion: There are very considerable differences between US EQ-5D-5L and PROPr utilities, despite both in principle representing utility on the same scale anchored at 0 and 1 and both representing the preferences of the US general public. It is important for decision makers and clinical triallists to be aware of these differences. Further work is needed to assess the impact of these differences in value sets using population and patient data, and in longitudinal settings., (© 2021. The Author(s).)

Women with breast cancer often experience major physical changes, which can impact their body image and Quality of Life (QoL). Traditional assessments of body image implemented within breast cancer research focus solely on body dissatisfaction. This study explored the association between both positive and negative body image and QoL. Australian women (N = 123) within 5-years of a breast cancer diagnosis were invited to complete a web-based questionnaire including measures of body appreciation and functionality appreciation, cancer-specific measures of body dissatisfaction and QoL, and demographic, health and treatment/illness questions. All body image measures were significantly associated with QoL (p < .01). However, when body image variables were entered simultaneously as predictors of QoL (adjusting for comorbidity, treatment and employment), only body dissatisfaction was significantly associated with QoL (p < .001). Further analyses indicated this was due to shared variance in QoL between body and functionality appreciation, suggesting they assess highly related constructs within this population. Results indicate positive and negative components of body image are relevant to QoL within breast cancer populations; though, body dissatisfaction remained the strongest predictor of QoL indicating its pervasiveness. Future research should explore the development and use of breast cancer-specific measures of positive body image., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2021 Elsevier Ltd. All rights reserved.)