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Journal articles on the topic 'Quality of life Australia'

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Author: Grafiati

Published: 10 December 2022

Last updated: 29 January 2023

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1

Lin, Xiaoping, Christina Bryant, Jennifer Boldero, and Briony Dow. "Psychological well-being of older Chinese immigrants living in Australia: a comparison with older Caucasians." International Psychogeriatrics 28, no. 10 (July 8, 2016): 1671–79. http://dx.doi.org/10.1017/s1041610216001010.

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ABSTRACTBackground:Few current studies explore psychological well-being among older Chinese immigrants in Australia. The study addressed this gap and provided preliminary data on psychological well-being among this group. Four indicators, namely depression, anxiety, loneliness, and quality of life, were used to present a comprehensive picture of psychological well-being.Methods:Participants were two groups of community-dwelling older people, specifically 59 Chinese immigrants and 60 Australian-born people (median age=77 and 73, respectively). Data were collected through standardized interviews. The Geriatric Depression Scale, the Hospital Anxiety and Depression Scale, the de Jong Gierveld Loneliness Scale and the WHO Quality of Life questionnaire were used to measure depression, anxiety, loneliness, and quality of life, respectively.Results:Chinese participants’ median quality of life score was higher than the scale mid-point, indicating relatively high levels of quality of life. However, 10% exhibited symptoms of depression, 6% had symptoms of anxiety, and 49% felt lonely. Compared to Australian participants, Chinese participants reported poorer quality of life and higher levels of loneliness. Importantly, the difference in quality of life remained when the impact of socio-demographic factors was controlled for.Conclusions:This study was the first to use multiple indicators to explore psychological well-being among older Chinese immigrants in Australia. Its results suggest that their psychological well-being might be worse than that of Australian-born people when using loneliness and quality of life as indicators. In particular, loneliness is a common psychological problem among this group, and there is a need for public awareness of this problem.

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Foroughi, E., R. Misajon, and R. A. Cummins. "The Relationships Between Migration, Social Support, and Social Integration on Quality of Life." Behaviour Change 18, no. 3 (September 1, 2001): 156–67. http://dx.doi.org/10.1375/bech.18.3.156.

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AbstractPast research indicates that humans have a remarkable ability to maintain normal levels of subjective wellbeing despite adverse objective circumstances. This suggests that such wellbeing may be held under homeostatic control. This paper investigates some of the potential factors that may contribute to this homeostatic mechanism, in response to the major life event of migration. Three groups were examined: Persian immigrants to Australia (Persian-Australians), non-Persian Australians, and Persians residing in Iran. A total of 330 subjects were recruited. A notable finding was that all three groups did not differ in regard to subjective wellbeing, despite the Persian-Australians being a minority ethnic group in Australia, and the Persians having significantly lower objective life quality. The Persian-Australians who migrated at an older age reported lower subjective quality of life, while the number of years of residence in Australia did not appear to be related to the extent of social integration. Subjective life quality was, however, related to subjective social support for the Australian and Persian samples, and to reciprocality of support for the Persian-Australians.

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Parker, Alice, Xin Tao Ye, Jacob Mathew, Melissa Lee, Igor E. Konstantinov, Yves d’Udekem, Christian Brizard, and Johann Brink. "Quality of life in adult survivors after paediatric heart transplantation in Australia." Cardiology in the Young 29, no. 7 (June 17, 2019): 939–44. http://dx.doi.org/10.1017/s104795111900115x.

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AbstractBackground:Paediatric heart transplantation in Australia is centralised at The Royal Children’s Hospital, Melbourne. Survival to adulthood is improving but the ongoing need for complex medical therapy, surveillance, and potential for late complications continues to impact on quality of life. Quality of life in adults who underwent heart transplantation in childhood in Australia has not been assessed.Methods:Cross-sectional quality of life data were collected from paediatric heart transplant survivors >18 years of age using Rand 36-Item Health Survey. Self-reported raw scores were transformed to a 0–100 scale with higher scores indicating better quality of life. Mean scores were compared to National Health Survey Short Form-36 Population Norms data using the independent sample t-test.Results:A total of 64 patients (64/151) who underwent transplantation at The Royal Children’s Hospital between 1988 and 2016 survived to adulthood. In total 51 patients (51/64, 80%) were alive at the time of the study and 27 (53%) responded with a mean age of 25 ± 6 years, being a median of 11 years (interquartile range 7–19) post-transplantation. Most self-reported quality of life subscale scores were not significantly different from the Australian normative population data. However, self-reported ‘General Health’ was significantly worse than normative data (p = 0.02). Overall, 93% (25/27) reported their general health as being the same or better compared to 1-year ago.Conclusion:Adult survivors after paediatric heart transplantation in Australia report good quality of life in multiple domains and demonstrate independence in activities of daily living and employment. However, lifelong medical treatment may affect perceptions of general health.

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Meuleners, Lynn B., Andy H. Lee, and Colin W. Binns. "Assessing Quality of Life for Adolescents in Western Australia." Asia Pacific Journal of Public Health 13, no. 1 (January 2001): 40–44. http://dx.doi.org/10.1177/101053950101300109.

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Chenhall, Richard D., Kate Senior, David Cole, Teresa Cunningham, and Ciaran O’Boyle. "Individual Quality of Life Among at Risk Indigenous Youth in Australia." Applied Research in Quality of Life 5, no. 3 (June 19, 2010): 171–83. http://dx.doi.org/10.1007/s11482-010-9101-y.

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Palmer, Andrew J., Ingrid van der Mei, Bruce V. Taylor, Philip M. Clarke, Steve Simpson, and Hasnat Ahmad. "Modelling the impact of multiple sclerosis on life expectancy, quality-adjusted life years and total lifetime costs: Evidence from Australia." Multiple Sclerosis Journal 26, no. 4 (February 26, 2019): 411–20. http://dx.doi.org/10.1177/1352458519831213.

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Objectives: To quantify life expectancy (LE), quality-adjusted life years (QALYs) and total lifetime societal costs for a hypothetical cohort of Australians with multiple sclerosis (MS). Methods: A 4-state Markov model simulated progression from no/mild to moderate and severe disability and death for a cohort of 35-year-old women over a lifetime horizon. Death risks were calculated from Australian life tables, adjusted by disability severity. State-dependent relapse probabilities and associated disutilities were considered. Probabilities of MS progression and relapse were estimated from AusLong and TasMSL MS epidemiological databases. Annual societal (direct and indirect) costs (2017 Australian dollars) and health-state utilities for each state were derived from the Australian MS Longitudinal Study. Costs were discounted at 5% annually. Results: Mean (95% confidence interval (CI)) LE from age 35 years was 42.7 (41.6–43.8) years. This was 7.5 years less than the general Australian population. Undiscounted QALYs were 28.2 (26.3–30.0), a loss of 13.1 QALYs versus the Australian population. Discounted lifetime costs were $942,754 ($347,856–$2,820,219). Conclusion: We have developed a health economics model of the progression of MS, calculating the impact of MS on LE, QALYs and lifetime costs in Australia. It will form the basis for future cost-effectiveness analyses of interventions for MS.

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Owen, Alice J., Salsabil B. Maulida, Ella Zomer, and Danny Liew. "Productivity burden of smoking in Australia: a life table modelling study." Tobacco Control 28, no. 3 (July 16, 2018): 297–304. http://dx.doi.org/10.1136/tobaccocontrol-2018-054263.

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ObjectivesThis study aimed to examine the impact of smoking on productivity in Australia, in terms of years of life lost, quality-adjusted life years (QALYs) lost and the novel measure of productivity-adjusted life years (PALYs) lost.MethodsLife table modelling using contemporary Australian data simulated follow-up of current smokers aged 20–69 years until age 70 years. Excess mortality, health-related quality of life decrements and relative reduction in productivity attributable to smoking were sourced from published data. The gross domestic product (GDP) per equivalent full-time (EFT) worker in Australia in 2016 was used to estimate the cost of productivity loss attributable to smoking at a population level.ResultsAt present, approximately 2.5 million Australians (17.4%) aged between 20 and 69 years are smokers. Assuming follow-up of this population until the age of 70 years, more than 3.1 million years of life would be lost to smoking, as well as 6.0 million QALYs and 2.5 million PALYs. This equates to 4.2% of years of life, 9.4% QALYs and 6.0% PALYs lost among Australian working-age smokers. At an individual level, this is equivalent to 1.2 years of life, 2.4 QALYs and 1.0 PALY lost per smoker. Assuming (conservatively) that each PALY in Australia is equivalent to $A157 000 (GDP per EFT worker in 2016), the economic impact of lost productivity would amount to $A388 billion.ConclusionsThis study highlights the potential health and productivity gains that may be achieved from further tobacco control measures in Australia via application of PALYs, which are a novel, and readily estimable, measure of the impact of health and health risk factors on work productivity.

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Cummins, Robert, and Paraskevi Theofilou. "Quality of life research: interview with Professor Robert Cummins." Health Psychology Research 1, no. 3 (September 23, 2013): 31. http://dx.doi.org/10.4081/hpr.2013.1555.

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Health-related quality of life (HRQOL) is a fundamental concept in the field of clinical medicine and has been studied during the last years by psychologists, sociologists, economists and managers. The concept of HRQOL includes those aspects of overall QOL that can be indicated to have an impact on patients’ health, either physical or psychological. Concerning the individuals, this incorporates physical and mental health cognitions, including sociodemographic factors, sexual functioning, fatigue, sleep disorders and functional status. One of the most eminent experts in the world in the field of QOL is Prof. Robert Cummins [Professor of Psychology at Deakin University in Australia (School of Psychology, Deakin University, 221 Burwood Highway, Victoria 3125 Melbourne, Australia. E-mail: robert.cummins@deakin.edu.au)] who kindly accepted to answer our questions in the con- text of this special edition.

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Goldstein, David, Ming Sze, Melanie Bell, Madeleine King, Michael Jefford, Maurice Eisenbruch, Afaf Girgis, Lisa Vaccaro, and Phyllis Noemi Butow. "Disparities in quality-of-life outcomes in immigrant cancer patients." Journal of Clinical Oncology 30, no. 15_suppl (May 20, 2012): e16507-e16507. http://dx.doi.org/10.1200/jco.2012.30.15_suppl.e16507.

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e16507 Background: Immigration is increasing world-wide. We explored disparities in quality of life outcomes for immigrant (IM) versus Anglo-Australian (AA) cancer patients having anti-cancer treatment. Methods: In a cross-sectional design, cancer patients were recruited through outpatient Oncology clinics in New South Wales, Victoria, and the Northern Territory in Australia. IM participants, their parents and grand parents were born in a country where Chinese, Greek, or Arabic is spoken and spoke one of those languages. AAs were born in Australia and spoke English. All were diagnosed with cancer < 1 year previously. Questionnaires (completed in preferred language) included the Hospital Anxiety and Depression Scale (anxiety/depression), FACT-G (quality of life) and the Supportive Care Needs Survey (unmet needs). Adjusted regression models comparing AA and IM groups included age, gender, socio-economic status, education, marital status, religion, time since diagnosis, and cancer type (colorectal, breast, lung, other). Results: There were 910 participants (response rate 57%). IM were similar to AA, except that IM were more likely to be married (76 vs 67 %, p = 0.01) and in the low and the highly educated groups (p < 0.0001). In adjusted analyses, IMs had clinically significant higher anxiety, greater unmet information and physical needs and lower quality of life than AAs (see table). The possible ranges are 0-21 for anxiety and depression, and 0-100 otherwise. Conclusions: In this hospital-based study with a high rate of advanced disease, immigrants with cancer experienced poorer quality of life outcomes, even after adjusting for socio-economic, demographic, and disease variables. Interventions are required to improve their experience of cancer care. Results highlight areas of unmet need that might be better addressed by the health system (particularly with regards to provision of information and meeting support and physical needs). [Table: see text]

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Millar, Jeremy L., Susan M. Evans, Mark Frydenberg, Declan G. Murphy, Damien M. Bolton, Graham G. Giles, and Ian D. Davis. "Quality-of-life outcomes for prostate cancer treatment in Australia." Journal of Clinical Oncology 31, no. 6_suppl (February 20, 2013): 143. http://dx.doi.org/10.1200/jco.2013.31.6_suppl.143.

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143 Background: We aimed to use a population based quality registry established in Australia, to review patient-reported health-related QOL after the diagnosis of Prostate Cancer (PCa). Methods: Prospective registry of men with PCa from statutory notifications to the canonical population-based cancer registry in Victoria. An "opt-off" mechanism used. Coverage expanded from 30%-80% of State population over time. Demographics and disease features, management, and outcomes from medical record; men phoned at 12 and 24 months (m), interviewed with script including SF12 and items from standard form (UCLA PCI) for specific QOL outcomes. Urinary, rectal, and sexual function bother (UB, RB, and SB) scores where analysed by univariate and multivariable modelling for relationship of these with presentation or management factors, adjusting for risk. Results: Men from 8/2008 - 2/2011; 1.9% of eligible opted out. Followed 1172 to 12 & 24 m. Median diagnosis age 65 yr; median PSA 6.8 ng/mL; 97.3% clinically localised with 47.7% having NCCN intermediate risk. 520 had treatment with Radical Prostatectomy (RP) (89 also with external beam-EBRT), 171 had EBRT (with or without HDR brachy), and 211 seed implant (SI). 226 had no treatment (NT) in the first 12 m. 52.5% managed in public hospitals, rest private. Univariate analysis: UB associated with management type, and hospital type, and RB and SB associated with these factors, as well as age and disease stage. On multivariate regression SB at 12 m was associated with increasing age (p=0.002) and radical treatment types (RP and EBRT/HDR, p<0.001 and 0.003 respectively)—except SI—compared to NT; RB was associated with SI (0.02) and EBRT/HDR (0.007) and treatment in a public hospital (0.006); and UB was associated with public hospital (<0.001). All associations at 12 m remained significant at 24 m. SF12 physical score had a positive association with RP vs NT (0.014), hospital type (0.001) and younger age. SF12 mental health also showed associations. Conclusions: A large scale registry in Australia assessing patient-reported quality of life outcomes after prostate cancer treatment shows patterns similar to that seen in North American reports.

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Knight, Lachlan S. W., Bronwyn Ridge, Sandra E. Staffieri, Jamie E. Craig, Mallika Prem Senthil, and Emmanuelle Souzeau. "Quality of life in children with glaucoma: a qualitative interview study in Australia." BMJ Open 12, no. 7 (July 2022): e062754. http://dx.doi.org/10.1136/bmjopen-2022-062754.

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ObjectiveChildhood glaucoma is a chronic vision-threatening condition that may significantly impact an individual’s psychosocial well-being. There is a paucity of literature investigating the quality of life (QoL) in children with glaucoma. The aim of this study was to investigate and report on the QoL issues encountered by children with glaucoma.DesignThis is a qualitative interview study. Data were collected through semistructured interviews. NVivo V.12 software (QSR International Pty Ltd, Melbourne, Australia) was used to analyse and code data to identify QoL themes. The prominence of QoL themes was determined by the number of children who raised issues connected to the corresponding theme.SettingInterviews were conducted via telephone or videoconferencing between April 2020 and July 2021.ParticipantsEighteen children with glaucoma, aged 8–17 years, who resided in Australia, were recruited from the Australian and New Zealand Registry of Advanced Glaucoma.ResultsMedian child age was 12.1 years (IQR: 9.7–14.5 years) and 33% were female. Seven QoL themes were identified: ‘coping’, ‘inconveniences’ and ‘emotional well-being’ were more prominent themes than ‘symptoms’, ‘ocular health concerns’, ‘social well-being’ and ‘autonomy’. Adaptive coping strategies included resilience throughout clinical examinations and establishing positive relationships with ophthalmologists. These minimised inconveniences related to clinic waiting times and pupillary dilatation. External to the clinical setting, children often dissociated from their glaucoma but struggled with glare symptoms and feeling misunderstood by fellow peers. Older children aged 13–17 years commonly disengaged from their glaucoma care and expressed an unwillingness to attend ophthalmic appointments. Older children further raised issues with career options, obtaining a driver’s licence and family planning under the theme of autonomy.ConclusionsThe psychosocial impact of childhood glaucoma extends beyond the clinical environment and was minimised using coping strategies. Older children may require additional social and ophthalmic support as they transition into adulthood.

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Tay, Hilson, Phillip S. Naimo, Li Huang, Tyson A. Fricke, Johann Brink, Yves d’Udekem, Christian P. Brizard, and Igor E. Konstantinov. "Long-term quality of life in adults following truncus arteriosus repair." Interactive CardioVascular and Thoracic Surgery 29, no. 6 (October 6, 2019): 950–54. http://dx.doi.org/10.1093/icvts/ivz198.

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OBJECTIVES To date, few studies have assessed the quality of life following congenital cardiac surgery. In this study, we aimed at determining the quality of life after truncus arteriosus (TA) repair using the Short Form 36 questionnaire in adult survivors. METHODS Seventy-three patients (age >18 years) who underwent TA repair at the Royal Children’s Hospital, Australia were identified for the study. Of these, 42 patients (58%, 42/73) participated in the study and completed the Short Form 36 questionnaire. The results of the 8 domains and the derived health state summary score (Short Form Six Dimension, SF-6D) were compared with age-matched Australian population controls, and with patients who underwent the arterial switch operation (ASO). RESULTS Compared with the age-matched Australian population, 18- to 24-year-old TA patients (31%, 13/42) had lower scores in 6 of 8 domains; 25- to 34-year-old TA patients (36%, 15/42) scored lower in 5 of 8 domains; and 35- to 44-year-old TA patients (33%, 14/42) scored lower in 4 of 8 domains. SF-6D scores were not significantly different between TA patients and the age-matched Australian population. Compared with patients who underwent ASO, 18-to 24-year-old TA patients scored lower in 3 of 8 domains; and 25- to 34-year-old TA patients scored lower in 2 of 8 domains. There was no significant difference in SF-6D scores between TA and patients who underwent the ASO. CONCLUSIONS Adult survivors of TA have similar quality of life compared with age-matched Australian controls measured by SF-6D. Despite a higher reoperation rate in TA patients, they have similar quality of life compared with ASO patients.

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Goldney, Robert D., Laura J. Fisher, Eleonora Dal Grande, Anne W. Taylor, and Graeme Hawthorne. "Bipolar I and II Disorders in a Random and Representative Australian Population." Australian & New Zealand Journal of Psychiatry 39, no. 8 (August 2005): 726–29. http://dx.doi.org/10.1080/j.1440-1614.2005.01657.x.

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Objective: To assess the prevalence of bipolar I and II disorders in an Australian population. Method: The Mood Disorder Questionnaire (MDQ) was administered to 3015 respondents in a random and representative sample in South Australia. Health status, quality of life and demographic data were also collected. Results: There was a 2.5% lifetime prevalence of bipolar I and II disorders delineated by the MDQ. Those people had a significantly greater use of services and a poorer health status and quality of life than those who were MDQ-negative. Conclusions: These results in an Australian population are consistent with other international studies showing a greater prevalence of bipolar disorders than hitherto appreciated.

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Rapley, Mark, and Laura Hopgood. "Quality of life in a community-based service in rural Australia." Journal of Intellectual & Developmental Disability 22, no. 2 (January 1997): 125–41. http://dx.doi.org/10.1080/13668259700033351.

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Anderson, Lauren, and Michelle Rodrigues. "Quality of life in a cohort of melasma patients in Australia." Australasian Journal of Dermatology 60, no. 2 (December 18, 2018): 160–62. http://dx.doi.org/10.1111/ajd.12969.

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Loo, Jasmine M. Y., Yongdong Shi, and Xiaohong Pu. "Gambling, Drinking and Quality of Life: Evidence from Macao and Australia." Journal of Gambling Studies 32, no. 2 (September 4, 2015): 391–407. http://dx.doi.org/10.1007/s10899-015-9569-3.

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Eagleson, Karen J., Robert N. Justo, Robert S. Ware, Susan G. Johnson, and Frances M. Boyle. "Health-related quality of life and congenital heart disease in Australia." Journal of Paediatrics and Child Health 49, no. 10 (June 27, 2013): 856–64. http://dx.doi.org/10.1111/jpc.12296.

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Eagleson, K., R. Justo, F. Boyle, R. Ware, and S. Johnson. "Health-Related Quality of Life and Congenital Heart Disease in Australia." Heart, Lung and Circulation 21 (January 2012): S293. http://dx.doi.org/10.1016/j.hlc.2012.05.719.

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Aitken, Laura-Anne, and Syeda Zakia Hossan. "The Psychological Distress and Quality of Life of Breast Cancer Survivors in Sydney, Australia." Healthcare 10, no. 10 (October 12, 2022): 2017. http://dx.doi.org/10.3390/healthcare10102017.

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In Australia, breast cancer is one of the most common cancers affecting women. Between 1987–1991 and 2012–2016, the five-year survival rate improved from 75% to 91%. The increased chance of survival due to early detection and treatment interventions has resulted in more women living with the diagnosis. This qualitative study was designed to analyse the journey of breast cancer survivors, their experience of psychological distress and changes in quality of life (QOL) due to the increased prevalence amongst Australian women. In-depth interviews were conducted; they lasted over 45 minutes and comprised 15 participants. The main topics discussed were knowledge of breast cancer prior to diagnosis, psychological distress, QOL and experience of use of healthcare services. The results showed that the process of diagnosis, undergoing treatment and isolation post-treatment resulted in high amounts of psychological distress. A reduction in QOL was also experienced due to treatment and medication side effects, fatigue, cognitive changes, and body-image perception. These findings can assist researchers in providing evidence-based frameworks for policy changes and for further investigation into effective healthcare interventions.

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Schadewaldt, Verena, Sandhya Cherkil, Dilip Panikar, and Katharine J. Drummond. "Quality of life after resection of a meningioma—A cross-cultural comparison of Indian and Australian patients." PLOS ONE 17, no. 9 (September 26, 2022): e0275184. http://dx.doi.org/10.1371/journal.pone.0275184.

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Purpose To compare health-related quality of life (HRQoL) and symptom burden following meningioma resection in patients from two samples from Australia and India. This will add to the body of data on the longer-term consequences of living with a meningioma in two socio-economically and culturally different countries. Methods The European Organisation for Research and Treatment of Cancer (EORTC) Core Quality of Life Questionnaire (QLQ-C30), Brain Neoplasm Module (QLQ-BN20) and the Hospital Anxiety and Depression Scale (HADS) were administered to 159 Australian and 92 Indian meningioma patients over 24 months postoperative. A linear mixed model analysis identified differences between groups over time. Results Australian patients reported better physical functioning in the early months after surgery (T1: mean diff: 19.8, p<0.001; T2: mean diff: 12.5, p = 0.016) whereas Indian patients reported better global HRQoL (mean: -20.3, p<0.001) and emotional functioning (mean diff:-15.6, p = 0.020) at 12–24 months. In general, Australian patients reported more sleep and fatigue symptoms while Indian patients reported more gastro-intestinal symptoms over the 2-year follow-up. Future uncertainty and symptoms common for brain tumour patients were consistently more commonly reported by patients in Australia than in India. No differences for depression and anxiety were identified. Conclusion This is the first cross cultural study to directly compare postoperative HRQoL in meningioma patients. Some differences in HRQoL domains and symptom burden may be explained by culturally intrinsic reporting of symptoms, as well as higher care support from family members in India. Although there were differences in some HRQoL domains, clinically meaningful differences between the two samples were less common than perhaps expected. This may be due to an Indian sample with high literacy and financial resources to afford surgery and follow up care.

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Bubb, Charles. "Earthquake engineering in Australia." Bulletin of the New Zealand Society for Earthquake Engineering 32, no. 1 (March 31, 1999): 13–20. http://dx.doi.org/10.5459/bnzsee.32.1.13-20.

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Earthquake Engineering in Australia, as elsewhere, has been formatted in the aftermath of damaging earthquakes. The first Australian Code AS2121-1979 was written and published after the 1968 Meckering WA earthquake. The second AS1170.4 1993 was published after the 1989 Newcastle NSW earthquake. Good quality Building Codes are a necessary basis for sound earthquake resistant designs. Both implementation and enforcement of the codes and sound robust construction in the field are essential for the protection of life and infrastructure. Also essential is the preservation and upgrading of the earthquake database. A study to assist the safer operation of emergency services immediately following damaging earthquakes is proposed.

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Green, Janet, Philip Darbyshire, Anne Adams, and Debra Jackson. "Quality versus quantity: The complexities of quality of life determinations for neonatal nurses." Nursing Ethics 24, no. 7 (January 24, 2016): 802–20. http://dx.doi.org/10.1177/0969733015625367.

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Background: The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is considered to be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years? Research question: The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical considerations: Ethical processes and procedures have been adhered to by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field. Conclusion: Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice.

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Donovan, Peter J., Donald S. A. McLeod, Richard Little, and Louisa Gordon. "Cost–utility analysis comparing radioactive iodine, anti-thyroid drugs and total thyroidectomy for primary treatment of Graves’ disease." European Journal of Endocrinology 175, no. 6 (December 2016): 595–603. http://dx.doi.org/10.1530/eje-16-0527.

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Objective Little data is in existence about the most cost-effective primary treatment for Graves’ disease. We performed a cost–utility analysis comparing radioactive iodine (RAI), anti-thyroid drugs (ATD) and total thyroidectomy (TT) as first-line therapy for Graves’ disease in England and Australia. Methods We used a Markov model to compare lifetime costs and benefits (quality-adjusted life-years (QALYs)). The model included efficacy, rates of relapse and major complications associated with each treatment, and alternative second-line therapies. Model parameters were obtained from published literature. One-way sensitivity analyses were conducted. Costs were presented in 2015£ or Australian Dollars (AUD). Results RAI was the least expensive therapy in both England (£5425; QALYs 34.73) and Australia (AUD5601; 30.97 QALYs). In base case results, in both countries, ATD was a cost-effective alternative to RAI (£16 866; 35.17 QALYs; incremental cost-effectiveness ratio (ICER) £26 279 per QALY gained England; AUD8924; 31.37 QALYs; ICER AUD9687 per QALY gained Australia), while RAI dominated TT (£7115; QALYs 33.93 England; AUD15 668; 30.25 QALYs Australia). In sensitivity analysis, base case results were stable to changes in most cost, transition probabilities and health-relative quality-of-life (HRQoL) weights; however, in England, the results were sensitive to changes in the HRQoL weights of hypothyroidism and euthyroidism on ATD. Conclusions In this analysis, RAI is the least expensive choice for first-line treatment strategy for Graves’ disease. In England and Australia, ATD is likely to be a cost-effective alternative, while TT is unlikely to be cost-effective. Further research into HRQoL in Graves’ disease could improve the quality of future studies.

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Nitschke, Monika, Graeme Tucker, DavidL Simon, DinoL Pisaniello, and AlanaL Hansen. "The link between noise perception and quality of life in South Australia." Noise and Health 16, no. 70 (2014): 137. http://dx.doi.org/10.4103/1463-1741.134913.

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Aghajanian, L., D. Tilden, and M. Valeri. "PIN27 ECONOMIC AND QUALITY OF LIFE BURDEN OF PAEDIATRIC INFLUENZA IN AUSTRALIA." Value in Health 22 (November 2019): S644. http://dx.doi.org/10.1016/j.jval.2019.09.1271.

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Ouppara, Nipa S., and Maria Victoria U. Sy. "Quality of Work Life Practices in a Multinational Company in Sydney, Australia." Procedia - Social and Behavioral Sciences 40 (2012): 116–21. http://dx.doi.org/10.1016/j.sbspro.2012.03.169.

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Meuleners, Lynn B., and Andy H. Lee. "Adolescent quality of life: A school-based cohort study in Western Australia." Pediatrics International 45, no. 6 (December 2003): 706–11. http://dx.doi.org/10.1111/j.1442-200x.2003.01798.x.

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Lok, Peter. "Stressors, coping mechanisms and quality of life among dialysis patients in Australia." Journal of Advanced Nursing 23, no. 5 (May 1996): 873–81. http://dx.doi.org/10.1046/j.1365-2648.1996.00893.x.

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Thomas, M. E., and C. Jameson. "Facial trauma and postinterventional quality of life in the Northern Territory, Australia." International Journal of Oral and Maxillofacial Surgery 36, no. 11 (November 2007): 1081. http://dx.doi.org/10.1016/j.ijom.2007.08.453.

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Ye, Xin Tao, Alice Parker, Melissa Lee, Igor Konstantinov, Jacob Mathew, Yves D’Udekem, Christian Brizard, and Johann Brink. "Quality of Life in Adult Survivors After Paediatric Heart Transplantation in Australia." Heart, Lung and Circulation 27 (2018): S543. http://dx.doi.org/10.1016/j.hlc.2018.04.115.

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Ye, Xin Tao, Alice Parker, Melissa Lee, Robert Weintraub, Johann Brink, and Igor Konstantinov. "Health-related Quality of Life of Paediatric Heart Transplant Recipients in Australia." Heart, Lung and Circulation 27 (2018): S597. http://dx.doi.org/10.1016/j.hlc.2018.04.274.

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Duffield, Christine, and Linda O'Brien-Pallas. "The causes and consequences of nursing shortages: a helicopter view of the research." Australian Health Review 26, no. 1 (2003): 186. http://dx.doi.org/10.1071/ah030186.

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In Australia,as in most industrialised countries,there is an acute shortage of registered nurses.While there are numerous research reports emanating from Canada,the United States and Great Britain that provide insight into reasons for this shortage, little comparable work has been undertaken in Australia. This paper presents an overview of the complex interlinking set of factors which cause or are the consequences of nursing shortages including lifestyle preferences, workforce composition,quality of work life and workload and the impact of organisational change and altered management practices. It is important that managers in Australian health care settings understand these issues in order to work towards developing sustainable solutions for retention.

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Ratcliffe, Julie, Ian Cameron, Emily Lancsar, Ruth Walker, Rachel Milte, Claire Louise Hutchinson, Kate Swaffer, and Stuart Parker. "Developing a new quality of life instrument with older people for economic evaluation in aged care: study protocol." BMJ Open 9, no. 5 (May 2019): e028647. http://dx.doi.org/10.1136/bmjopen-2018-028647.

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IntroductionThe ageing of the population represents a significant challenge for aged care in Australia and in many other countries internationally. In an environment of increasing resource constraints, new methods, techniques and evaluative frameworks are needed to support resource allocation decisions that maximise the quality of life and well-being of older people. Economic evaluation offers a rigorous, systematical and transparent framework for measuring quality and efficiency, but there is currently no composite mechanism for incorporating older people’s values into the measurement and valuation of quality of life for quality assessment and economic evaluation. In addition, to date relatively few economic evaluations have been conducted in aged care despite the large potential benefits associated with their application in this sector. This study will generate a new preference based older person-specific quality of life instrument designed for application in economic evaluation and co-created from its inception with older people.Methods and analysisA candidate descriptive system for the new instrument will be developed by synthesising the findings from a series of in-depth qualitative interviews with 40 older people currently in receipt of aged care services about the salient factors which make up their quality of life. The candidate descriptive system will be tested for construct validity, practicality and reliability with a new independent sample of older people (n=100). Quality of life state valuation tasks using best worst scaling (a form of discrete choice experiment) will then be undertaken with a representative sample of older people currently receiving aged care services across five Australian states (n=500). A multinomial (conditional) logistical framework will be used to analyse responses and generate a scoring algorithm for the new preference-based instrument.Ethics and disseminationThe new quality of life instrument will have wide potential applicability in assessing the cost effectiveness of new service innovations and for quality assessment across the spectrum of ageing and aged care. Results will be disseminated in ageing, quality of life research and health economics journals and through professional conferences and policy forums. This study has been reviewed by the Human Research Ethics Committee of the University of South Australia and has ethics approval (Application ID: 201644).

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Hallam, Gillian. "Library life in Australia: It Has Been a Busy Year!" Bibliothek Forschung und Praxis 43, no. 1 (April 3, 2019): 206–15. http://dx.doi.org/10.1515/bfp-2019-2010.

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AbstractThe strength and vibrancy of the Australian library sector is explored in this article. The concepts of developing, i.e. growing and maturing as an industry, and sustaining, i.e. supporting and maintaining the quality of library services, thread through the discussions about the events and activities that have shaped the library profession, library advocacy initiatives and the future generation of librarians.

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Si, Si, Kate Lewkowski, Lin Fritschi, Jane Heyworth, Danny Liew, and Ian Li. "Productivity Burden of Occupational Noise-Induced Hearing Loss in Australia: A Life Table Modelling Study." International Journal of Environmental Research and Public Health 17, no. 13 (June 29, 2020): 4667. http://dx.doi.org/10.3390/ijerph17134667.

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Background: Occupational noise-induced hearing loss (ONIHL) is one of the most common yet preventable occupational diseases. The aim of this study was to estimate the economic burden of ONIHL in the Australian working population by quantifying and monetising ONIHL—related loss of Quality Adjusted Life Years (QALY) and Productivity Adjusted Life Years (PALYs). Methods: We simulated the number of moderate-to-severe ONIHL by multiplying the age-specific prevalence of occupational noise exposure by the excess risks of ONIHL. Life table modelling was applied to workers with ONIHL. The QALY and PALY weights attributable to hearing loss were sourced from published data. The 2016 Gross Domestic Product per full-time equivalent worker in Australia was used to estimate the cost of productivity loss due to ONIHL. The cost due to the loss of well-being was quantified using willingness to pay thresholds derived from an Australian longitudinal study. Results: Under current occupational noise exposure levels in Australia, we estimated that over 80,000 male workers and over 31,000 female workers would develop ONIHL over 10 years of exposure. Following this cohort until the age of 65 years, the estimated loss of QALYs and PALYs were 62,218 and 135,561 respectively, with a projected loss of AUD 5.5 billion and AUD 21.3 billion due to well-being and productivity loss, respectively. Reducing noise exposure at work would substantially reduce the economic burden of ONIHL. Conclusion: ONIHL imposes substantial burden on Australian economy. Interventions to reduce occupational noise exposure are warranted.

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Zubaran, Carlos, Jonathan Emerson, Rishi Sud, Elham Zolfaghari, and Katia Foresti. "The application of the drug user quality of life scale (DUQOL) in Australia." Health and Quality of Life Outcomes 10, no. 1 (2012): 31. http://dx.doi.org/10.1186/1477-7525-10-31.

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Nakanishi, Hitomi. "How does urban policy influence quality of life? The case of Canberra, Australia." Policy Studies 36, no. 1 (January 2, 2015): 72–91. http://dx.doi.org/10.1080/01442872.2014.981059.

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McCabe, Marita P., and Elodie J. O’Connor. "The Economic Impact of Progressive Neurological Illness on Quality of Life in Australia." Journal of Family and Economic Issues 31, no. 1 (December 1, 2009): 82–89. http://dx.doi.org/10.1007/s10834-009-9177-4.

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Taylor, William J., and Kathryn M. McPherson. "Measuring Quality of Life." Australian Journal of Rehabilitation Counselling 5, no. 2 (1999): 69–77. http://dx.doi.org/10.1017/s1323892200001071.

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Demonstrating the effectiveness of health care interventions requires valid measurement of the impact, or outcome of those interventions. It is increasingly suggested that Quality of Life (QoL) is the ‘gold standard’ outcome internationally (Bowling 1995) and in Australasia (Mordue & Parkin, 1997). Although a number of QoL measures are now available, questions remain about the definition of the concept itself and the psychometric properties of those measures. A consequence of major concern is that health services research or clinical studies of healthcare interventions using inadequately defined outcomes or invalid measures will in turn produce results that lack validity. This paper explores a number of such issues concerning the concept of QoL and the way it is measured.

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Santiago, Pedro Henrique Ribeiro, Marko Milosevic, Xiangqun Ju, Wendy Cheung, Dandara Haag, and Lisa Jamieson. "A network psychometric validation of the Children Oral Health-Related Quality of Life (COHQoL) questionnaire among Aboriginal and/or Torres Strait Islander children." PLOS ONE 17, no. 8 (August 18, 2022): e0273373. http://dx.doi.org/10.1371/journal.pone.0273373.

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In Australia, research evidence has shown that Aboriginal and/or Torres Strait Islander children experience a higher burden of oral health diseases compared to other non-Indigenous children. The impact of oral health diseases on children’s functional and psychosocial outcomes led to the development of several instruments to evaluate child oral health-related quality of life (COHQoL), such as the Parental-Caregiver Perception Questionnaire (P-CPQ) and the Family Impact Scale (FIS). However, the psychometric properties of these instruments have been evaluated only in Western cultures and have not been investigated for Aboriginal children in Australia. The current study aimed to examine the psychometric properties of the short-forms P-CPQ and FIS for Aboriginal and/or Torres Strait Islander children aged 2–3 years. Data were collected from the South Australian Aboriginal Birth Cohort (SAABC), including 270 Aboriginal children aged 2–3 years. Network psychometric models were used to investigate dimensionality, item redundancy, structural consistency and item stability, model fit, internal consistency reliability and criterion validity. We propose an instrument named Aboriginal Children’s Oral Health-Related Quality of Life Questionnaire (A-COHQoL). Our findings indicated that, after the exclusion of four problematic items, the A-COHQoL showed a three-dimensional structure (“Parent/Family Activities”, “COHQoL” and “Family Conflict”) with good model fit and reliability. The A-COHQoL is a psychometrically robust and sensitive instrument that is readily available for Aboriginal and/or Torres Strait Islander children aged 2–3 years in Australia and can be adapted in the future for Indigenous child groups in other countries.

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Kimhi, Shaul, and Yarden Oliel. "National resilience, country corruption and quality of life: An international study." International Journal of Social Sciences and Humanities Invention 6, no. 5 (May 20, 2019): 5430–36. http://dx.doi.org/10.18535/ijsshi/v6i5.05.

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The present study examines levels of corruption and quality of life as predictors of national resilience among six samples of students from Australia, Germany, Britain, South Korea, Israel and Greece (N=1199). Results indicated that the level of corruption and quality of life index significantly predicted national resilience: the lower the level of corruption and the higher the level of quality of life, the higher the national resilience reported. Comparing the two predictors indicated that the level of corruption is a better predictor of national resilience compared with the quality of life index. This study points to the significant link between national resilience and corruption among low-level countries in the world's corruption hierarchy.

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Chambers, Paul. "Yeasts: Products and Discovery (YPD) in Australia." Microbiology Australia 28, no. 2 (2007): 43. http://dx.doi.org/10.1071/ma07043.

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'Consider life without chocolate or good quality coffee' (see Graham Fleet and Hugh Dircks paper, ?Yeast, Cocoa Beans and Chocolate?, in this Yeast Special Edition of Microbiology Australia). And one can add to their list: wine (see papers from Sakkie Pretorius? and Vladimir Jiranek?s groups), beer (Vince Higgin?s paper) and leavened breads. All require the action of yeasts for their production, and yeasts are of enormous value as hosts for the expression and production of many proteins, including pharmaceuticals (see Ian Macreadie?s paper). Clearly, many aspects of the quality of our lives would be greatly diminished without yeasts.

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Perales, Francisco, and Gary Bouma. "Religion, religiosity and patriarchal gender beliefs: Understanding the Australian experience." Journal of Sociology 55, no. 2 (August 1, 2018): 323–41. http://dx.doi.org/10.1177/1440783318791755.

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This study examines diversity in how different religious groups and people with different levels of religiosity see the value and roles of women in Australian society through an examination of their gender beliefs. This addresses a significant gap in knowledge in the Australian scholarship in religious diversity and the impact of religion in family life. Understanding the relationships between religious identity and patriarchal gender attitudes is critical to understanding certain contemporary social problems, such as the links between religion and domestic violence, and devising appropriate intervention. The analyses rely on high-quality panel data from a national sample, the Household, Income and Labour Dynamics in Australia Survey. Identifying with a religion is associated with stronger patriarchal attitudes, but there is remarkable heterogeneity in attitudes across religious groups. Higher religiosity is associated with stronger patriarchal beliefs. Differences in patriarchal beliefs between religious and non-religious people in Australia increased between 2005 and 2015.

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Ratcliffe, Julie, Gang Chen, Elisabeth Huynh, Frank Xu, Katherine Stevens, John Brazier, and Joffre Swait. "OP55 Health Technology Assessment In Children And Adolescents: Adolescent Preferences For Child Health Utility 9D Health States." International Journal of Technology Assessment in Health Care 33, S1 (2017): 24–25. http://dx.doi.org/10.1017/s026646231700143x.

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INTRODUCTION:Preference-based measures of health-related quality of life play a key role in the calculation of Quality-Adjusted Life Years (QALYs) for Health Technology Assessment (HTA). The Child Health Utility 9D (CHU9D) is a new preference-based instrument designed specifically for application in children and adolescents (aged 7 to 17 years). This study aimed to compare Chinese and Australian adolescent population preferences for CHU9D health states using profile case best worst scaling (BWS) methods.METHODS:Fifty CHU9D health states (blocked into five survey versions) were generated for valuation using a fractional factorial design. Study participants were recruited through an online panel company in Australia, and through primary and secondary schools in China. A latent class modelling framework was adopted for econometric analysis.RESULTS:A total of 1,982 respondents (51 percent female) in Australia and 902 respondents (43 percent female) in China provided useable survey responses. Latent class analysis indicated the existence of preference heterogeneity for both population groups. In the Australian sample, respondents in Class I placed the most importance on the mental health dimensions of the CHU9D (for example, Worried and Annoyed) and the least importance on daily activities (for example, Activities, Daily routine, Sleep), whilst respondents in Class II placed equal weights on all attributes. In the Chinese sample, respondents in Class I placed the most importance on the Activities dimension of the CHU9D and the least importance on the Annoyed dimension, whist Class II placed the most importance on the Schoolwork dimension and the least importance on Pain.CONCLUSIONS:This study has provided important cross-country insights into the use of profile case BWS methods to elicit health state preferences with young people for application in HTA in children and adolescents. The differential latent classes identified between Australia and China highlights the necessity to derive country-specific adolescent scoring algorithms for the CHU9D instrument for application in HTA.

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Kim, Joosup, Nadine E. Andrew, Amanda G. Thrift, Julie Bernhardt, Richard I. Lindley, and Dominique A. Cadilhac. "The potential health and economic impact of improving stroke care standards for Australia." International Journal of Stroke 12, no. 8 (March 22, 2017): 875–85. http://dx.doi.org/10.1177/1747493017700662.

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Background Evidence of the burden of suboptimal stroke care should expedite quality improvement. We aimed to estimate the health and economic impact of improving acute stroke management to best practice standards using Australia as a case study. Methods Hospital performance in Australia was estimated using data from the National Stroke Audit of Acute Services 2013. The percentage of patients provided evidence-based therapies in all hospitals was compared to that achieved in the aggregate of top performing benchmark hospitals (that included between them, a minimum contribution of 15% of all cases audited). The number of additional patients who would receive therapies if this performance gap was rectified was applied to a standardized economic simulation model that comprised stroke rates and resource-use estimates from the North East Melbourne Stroke Incidence Study applied to the 2013 Australian population. Results In 2013, 41,398 patients were estimated to have been hospitalized with stroke. If acute care was improved to that of Australian benchmarks, there would be an additional 15,317 patients accessing stroke units; 1960 receiving thrombolysis; and 4007 being treated with antihypertensive medication, 3082 with antiplatelet medication, 2179 with anticoagulant medication, and 3514 with lipid-lowering therapy. Approximately 9329 disability-adjusted life years could be avoided. This additional care provided would be cost effective at AUD 3304 per disability adjusted life year avoided. Conclusion The benefits of reducing evidence–practice gaps in Australia are considerable. Further investment in initiatives to optimize hospital care is justified.

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Stewart, Grant D., Gareth Long, and Bruce R. Tulloh. "Surgical service centralisation in Australia versus choice and quality of life for rural patients." Medical Journal of Australia 185, no. 3 (August 2006): 162–63. http://dx.doi.org/10.5694/j.1326-5377.2006.tb00507.x.

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Dyer, Suzanne M., Enwu Liu, Emmanuel S. Gnanamanickam, Rachel Milte, Tiffany Easton, Stephanie L. Harrison, Clare E. Bradley, Julie Ratcliffe, and Maria Crotty. "Clustered domestic residential aged care in Australia: fewer hospitalisations and better quality of life." Medical Journal of Australia 208, no. 10 (June 2018): 433–38. http://dx.doi.org/10.5694/mja17.00861.

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Lepore, Michael, David Edvardsson, Ayumi Igarashi, and Julienne Meyer. "How Long-Term Care Quality Assurance Measures Address Dementia in Australia, England, Japan, and the United States." Innovation in Aging 5, Supplement_1 (December 1, 2021): 500–501. http://dx.doi.org/10.1093/geroni/igab046.1933.

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Abstract The prevalence of people with dementia living in long-term care (LTC) is high and rising internationally, and the need to improve LTC for people with dementia is widely recognized. In some countries, LTC quality assurance programs use quantitative measures of LTC quality, and international bodies emphasize the importance of person-centered care and healthy ageing outcomes. To better understand how LTC quality assurance programs address dementia, programs were reviewed in four countries—Australia, England, Japan, and the United States. Quality measures from each program were identified (n = 38) and examined to determine how they address dementia. Most measures did not address dementia, but four risk-adjusted for dementia (antipsychotic use, fractures, falls, mobility), one was dementia-specific (dementia/delirium hospitalizations), and one excluded people with dementia (losing bowel/bladder control). The other 32 measures were calculated equally regardless of the prevalence of dementia among LTC residents. Overall, LTC quality measurement differs internationally, but few measures address dementia. When dementia is addressed in quality measure calculations, it is most often as a risk-adjustor. Risk adjustment can help with attributing performance on these measures to the LTC setting rather than to the types of residents that the setting serves, but risk adjustment factors also are highly amenable to fraud, and thus require ongoing monitoring. Although LTC quality assessment programs and measures can help ensure people with dementia have access to quality LTC, adoption of measures that are meaningful to people with dementia—including measures of person-centered care and healthy ageing outcomes—remains needed.

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Atlantis, E., R. Goldney, K. Eckert, A. Taylor, and P. Phillips. "FC21-07 - Trends in health-related quality of life and health service use associated with comorbid diabetes and major depression in South Australia, 1998–2008." European Psychiatry 26, S2 (March 2011): 1933. http://dx.doi.org/10.1016/s0924-9338(11)73637-9.

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PurposeTo investigate trends in health-related quality of life and health service use associated with diabetes and/or major depression in South Australia from 1998 to 2008.MethodsData analyzed were from 9,059 persons aged ≥15 years who participated in representative surveys of the South Australian population in 1998, 2004 and 2008. Major depression was determined using the mood module of the Primary Care Evaluation of Mental Disorders (PRIME-MD). Diagnosed diabetes and health service use was determined by self-report. Health-related quality of life was assessed using the 36-item Short-Form Health Survey (SF-36) and the 15-item Assessment of Quality of Life (AQoL) instruments. Weighted age-standardized and multiple-adjusted means of dependent measures were computed.ResultsThe prevalence of diabetes only, major depression only, and comorbid diabetes and major depression increased by 74%, 36% and 53% from 1998 to 2008. Mean health-related quality of life scores were 9% to 41% lower (worse), and health service use was 49% higher for persons with comorbid diabetes and major depression than for those with diabetes only (all P-values < 0.05), consistently over the 10-year period.ConclusionsIf past trends continue, our results suggest that the population health and economic burden of comorbid diabetes and major depression will grow similarly over the next decade or so. These trends have important implications for making health policy and resource allocation decisions.

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Chambers, Georgina M., Stella Nalukwago Settumba, Kate A. Carey, Anita Cairns, Manoj P. Menezes, Monique Ryan, and Michelle A. Farrar. "Prenusinersen economic and health-related quality of life burden of spinal muscular atrophy." Neurology 95, no. 1 (June 8, 2020): e1-e10. http://dx.doi.org/10.1212/wnl.0000000000009715.

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ObjectiveTo quantify the economic and health-related quality of life (HRQoL) burden incurred by households with a child affected by spinal muscular atrophy (SMA).MethodsHospital records, insurance claims, and detailed resource use questionnaires completed by caregivers were used to capture the direct and indirect costs to households of 40 children affected by SMA I, II, and III in Australia between 2016 and 2017. Prevalence costing methods were used and reported in 2017 US dollar (USD) purchasing power parity (PPP). The HRQoL for patients and primary caregivers was quantified with the youth version of the EQ-5D and CareQoL multiattribute utility instruments and Australian utility weights.ResultsThe average total annual cost of SMA per household was $143,705 USD PPP for all SMA types (SMA I $229,346, SMA II $150,909, SMA III $94,948). Direct costs accounted for 56% of total costs. The average total indirect health care costs for all SMA types were $63,145 per annum and were highest in families affected by SMA II. Loss of income and unpaid informal care made up 24.2% and 19.8% respectively, of annual SMA costs. Three of 4 (78%) caregivers stated that they experienced financial problems because of care tasks. The loss in HRQoL of children affected by SMA and caregivers was substantial, with average caregiver and patient scores of 0.708 and 0.115, respectively (reference range 0 = death and 1 = full health).ConclusionOur results demonstrate the substantial and far-ranging economic and quality of life burden on households and society of SMA and are essential to fully understanding the health benefits and cost-effectiveness associated with emerging disease-modifying therapies for SMA.

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