Browsing by Subjects "Quality of Life"
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Journal Article Change in health outcomes for First Nations children with chronic wet cough: rationale and study protocol for a multi-centre implementation science study.(2022-12-29) ;Laird PJ ;Walker R ;McCallum G ;Toombs M ;Barwick M ;Morris, Peter ;Aitken R ;Cooper M ;Norman R; ;Lau G ;Chang ABSchultz ABACKGROUND: In children, chronic wet cough may be a sign of underlying lung disease, including protracted bacterial bronchitis (PBB) and bronchiectasis. Chronic (> 4 weeks in duration) wet cough (without indicators pointing to alternative causes) that responds to antibiotic treatment is diagnostic of PBB. Timely recognition and management of PBB can prevent disease progression to irreversible bronchiectasis with lifelong consequences. However, detection and management require timely health-seeking by carers and effective management by clinicians. We aim to improve (a) carer health-seeking for chronic wet cough in their child and (b) management of chronic wet cough in children by clinicians. We hypothesise that implementing a culturally integrated program, which is informed by barriers and facilitators identified by carers and health practitioners, will result in improved lung health of First Nations children, and in the future, a reduced the burden of bronchiectasis through the prevention of the progression of protracted bacterial bronchitis to bronchiectasis. METHODS: This study is a multi-centre, pseudorandomised, stepped wedge design. The intervention is the implementation of a program. The program has two components: a knowledge dissemination component and an implementation component. The implementation is adapted to each study site using a combined Aboriginal Participatory Action Research and an Implementation Science approach, guided by the Consolidated Framework of Implementation Research. There are three categories of outcome measures related to (i) health (ii) cost, and (iii) implementation. We will measure health-seeking as the proportion of parents seeking help for their child in a 6-month period before the intervention and the same 6-month period (i.e., the same six calendar months) thereafter. The parent-proxy, Cough-specific Quality of Life (PC-QoL) will be the primary health-related outcome measure. DISCUSSION: We hypothesise that a tailored intervention at each site will result in improved health-seeking for carers of children with a chronic wet cough and improved clinician management of chronic wet cough. In addition, we expect this will result in improved lung health outcomes for children with a chronic wet cough. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry; ACTRN12622000430730 , registered 16 March 2022, Retrospectively registered.3323 - Publication
Journal Article Codesigning enhanced models of care for Northern Australian Aboriginal and Torres Strait Islander youth with type 2 diabetes: study protocol.(2024-03-06) ;Kirkham, Renae ;Puszka, Stefanie; ;Freeman, Natasha ;Weaver, Emma ;Morris, Jade ;Mack, Shiree ;O'Donnell, Vicki ;Boffa, John; ; ; ;Graham, Sian ;Scott, Lydia ;Sinha, Ashim K; ;Shaw, Jonathan E ;Azzopardi, Peter ;Brown, Alex ;Davis, Elizabeth ;Wicklow, BrandyPremature onset of type 2 diabetes and excess mortality are critical issues internationally, particularly in Indigenous populations. There is an urgent need for developmentally appropriate and culturally safe models of care. We describe the methods for the codesign, implementation and evaluation of enhanced models of care with Aboriginal and Torres Strait Islander youth living with type 2 diabetes across Northern Australia.Our mixed-methods approach is informed by the principles of codesign. Across eight sites in four regions, the project brings together the lived experience of Aboriginal and Torres Strait Islander young people (aged 10-25) with type 2 diabetes, their families and communities, and health professionals providing diabetes care through a structured yet flexible codesign process. Participants will help identify and collaborate in the development of a range of multifaceted improvements to current models of care. These may include addressing needs identified in our formative work such as the development of screening and management guidelines, referral pathways, peer support networks, diabetes information resources and training for health professionals in youth type 2 diabetes management. The codesign process will adopt a range of methods including qualitative interviews, focus group discussions, art-based methods and healthcare systems assessments. A developmental evaluation approach will be used to create and refine the components and principles of enhanced models of care. We anticipate that this codesign study will produce new theoretical insights and practice frameworks, resources and approaches for age-appropriate, culturally safe models of care.The study design was developed in collaboration with Aboriginal and Torres Strait Islander and non-Indigenous researchers, health professionals and health service managers and has received ethical approval across all sites. A range of outputs will be produced to disseminate findings to participants, other stakeholders and the scholarly community using creative and traditional formats.11 - Publication
Journal Article Cough, airway inflammation, and mild asthma exacerbation.(2002-04-01) ;Chang, A B ;Harrhy, V A ;Simpson, J ;Masters, I BGibson, P GProspective data on the temporal relation between cough, asthma symptoms, and airway inflammation in childhood asthma is unavailable. Using several clinical (diary, quality of life), lung function (FEV(1), FEV(1) variability, airway hyperresponsiveness), cough (diary, cough receptor sensitivity (CRS)), and inflammatory markers (sputum interleukin 8, eosinophilic cationic protein (ECP), myeloperoxidase; and serum ECP) of asthma severity, we prospectively described the course of these markers in children with asthma during a non-acute, acute, and resolution phase. A total of 21 children with asthma underwent these baseline tests; 11 were retested during days 1, 3, 7, and 28 of an exacerbation. Asthma exacerbations were characterised by increased asthma and cough symptoms and eosinophilic inflammation. Sputum ECP showed the largest increase and peaked later than clinical scores. Asthma scores consistently related to cough score only early in the exacerbation. Neither CRS nor cough scores related to any inflammatory marker. In mild asthma exacerbations, eosinophilic inflammation is dominant. In asthmatic children who cough as a dominant symptom, cough heralds the onset of an exacerbation and increased eosinophilic inflammation, but cough scores and CRS do not reflect eosinophilic airway inflammation.991 - Publication
Journal Article High morbidity during treatment and residual pulmonary disability in pulmonary tuberculosis: under-recognised phenomena.In pulmonary tuberculosis (PTB), morbidity during treatment and residual pulmonary disability can be under-estimated. Among adults with smear-positive PTB at an outpatient clinic in Papua, Indonesia, we assessed morbidity at baseline and during treatment, and 6-month residual disability, by measuring functional capacity (six-minute walk test [6MWT] and pulmonary function), quality of life (St George's Respiratory Questionnaire [SGRQ]) and Adverse Events ([AE]: new symptoms not present at outset). Results were compared with findings in locally-recruited volunteers. 200 PTB patients and 40 volunteers were enrolled. 6WMT was 497m (interquartile range 460-529) in controls versus 408m (IQR 346-450) in PTB patients at baseline (p<0.0001) and 470m (IQR 418-515) in PTB patients after 6 months (p=0.02 versus controls). SGRQ total score was 0 units (IQR 0-2.9) in controls, versus 36.9 (27.4-52.8) in PTB patients at baseline (p<0.0001) and 4.3 (1.7-8.8) by 6 months (p<0.0001). Mean percentage of predicted FEV1 was 92% (standard deviation 19.9) in controls, versus 63% (19.4) in PTB patients at baseline (p<0.0001) and 71% (17.5) by 6 months (p<0.0001). After 6 months, 27% of TB patients still had at least moderate-severe pulmonary function impairment, and 57% still had respiratory symptoms, despite most achieving 'successful' treatment outcomes, and reporting good quality of life. More-advanced disease at baseline (longer illness duration, worse baseline X-ray) and HIV positivity predicted residual disability. AE at any time during treatment were common: itch 59%, arthralgia 58%, headache 40%, nausea 33%, vomiting 16%. We found high 6-month residual pulmonary disability and high AE rates. Although PTB treatment is highly successful, the extent of morbidity during treatment and residual impairment could be overlooked if not specifically sought. Calculations of PTB-related burden of disease should acknowledge that TB-related morbidity does not stop at 6 months. Early case detection and treatment are key in minimising residual impairment.1256 - Publication
Journal Article Improving the quality of life of palliative and chronic disease patients and carers in remote Australia with the establishment of a day respite facility.(2016-07-18) ;Carey, Timothy A ;Schouten, Kellie ;Wakerman, John ;Humphreys, John S; ;Murphy, SimonArundell, MickIn the Northern Territory (NT) there is a lack of respite services available to palliative care patients and their families. Indigenous people in the NT suffer substantially higher rates of poorly controlled chronic disease and premature mortality associated with poor heath than the Australian population as a whole. The need for a flexible, community based, culturally appropriate respite service in Alice Springs was identified and, after the service had been operating for 10 months, a qualitative evaluation was conducted to investigate the experiences of people involved in the use and operation of the service. Semi-structured interviews were conducted with patients, carers, referrers, and stakeholders. A total of 20 people were interviewed. Interpretative Phenomenological Analysis was used inductively to analyse the transcripts. Two case studies are also described which illustrate in greater detail the impact the respite service has had on people's lives. From the semi-structured interviews, two superordinate themes along with a number of sub themes were developed. The two superordinate themes described both "The Big Picture" considerations as well as the pragmatics of "Making the Service Work". The sub themes highlighted issues such as being stuck at home and the relief that respite provided. The case studies poignantly illustrate the difference the respite service made to the quality of life of two patients. The findings clearly indicate an improvement in quality of life for respite patients and their carers. The respite service enabled improved care coordination of chronic and complex patients as well as improved medication compliance and symptom management. As a result of this evaluation a number of recommendations to continue and improve the service are provided.1597 - Publication
Journal Article Indicators of injury recovery identified by patients, family members and clinicians.(2016-12) ;Aitken, Leanne M ;Chaboyer, Wendy ;Jeffrey, Carol; ;Whitty, Jennifer A ;Schuetz, MichaelRichmond, Therese SA focus on what is important to patients has been recognized as an essential pillar in care to ensure safe patient care that focuses on outcomes identified as important by patients. Despite this, asking trauma patients and their families what they consider should be the priorities of care and recovery has been neglected. Adult trauma patients admitted to two centers in Australia for ≥24h for the treatment of physical injury, and family members of injured patients and clinicians caring for injured patients were invited to participate. Individual interviews were conducted with the patient and family members prior to hospital discharge, and again one and three months post discharge. Individual interviews or focus groups were conducted with clinicians at one point in time. Content analysis of all transcripts was undertaken to determine the indicators of successful recovery over time. Participants in the three stakeholder groups were enrolled (patients - 33; family members-22; clinicians-40). Indicators of recovery focused on five main categories including returning to work, resuming family roles, achieving independence, recapturing normality and achieving comfort. Other categories that were less frequently identified included maintaining one's household, restoring emotional stability, cosmetic considerations and appearance, realignment of life goals, psychological recovery and development of self. Indicators of recovery after physical injury were similar across the three stakeholder groups, although with greater detail identified by patients. In addition, indicators evolved over time with increasing recognition of the importance of the overall impact of the injury in general and on activities of daily living and an unfolding appreciation that life could not be taken for granted. Description of the indicators of recovery after traumatic injury that matter to patients, family members and clinicians enable an understanding of similarities and differences. Further testing in a broader cohort of participants is essential to identify patient reported outcome measures that might be used in trauma care and associated research.1249 - Publication
Journal Article International partnerships and the development of a Sister Hospital Programme.(2013-03-01) ;Brown, Di ;Rickard, Greg ;Mustriwati, K ASeiler, JDespite some progress in meeting the Millennium Development Goals, there are still major discrepancies in health service provision between developed and developing countries. Nurses are key players to improving the quality of health services. Increasingly, partnerships are being initiated between nurses of different countries to enable those working in developing countries to improve standards of clinical care. This paper describes a partnership between two major teaching hospitals: one in Indonesia and one in Australia, designed to assist in improving standards of clinical care within the Indonesian hospital. The nature of the partnership, conceptualized as a Sister Hospital Program, is described. The processes and outcomes of the pilot programme conducted in 2011 are outlined. A brief description of the methods used to gain financial support from the Northern Territory Government is provided. The programme offered a skills development programme for selected staff from Sanglah General Hospital in Bali at Royal Darwin Hospital in northern Australia. The paper uses Green's PROCEED-PRECEDE framework both to describe and evaluate the pilot programme. The skills development programme was enthusiastically evaluated by staff from both hospitals and has led to major changes in the management of patients within the Emergency Department of Sanglah General Hospital. The success of the pilot has resulted in longer-term funding by the Australian government. WIDER POLICY OUTCOMES: The partnership model described in the paper is submitted as a possible framework for others wishing to build long-term and collaborative relationships between nurses of different nations.945 - Publication
Journal Article Long-term morbidity and mortality in survivors of critical illness: a 5-year observational follow-up study.(2017-02); This prospective observational study over 5 years aimed to quantify long-term morbidity and mortality in a prospectively recruited cohort of Central Australian survivors of critical illness. Eligible participants are survivors of an intensive care unit (ICU) admission for a critical illness at the Alice Springs Hospital (ASH), prospectively recruited during 2009. The ASH ICU is a 10-bed unit located in Central Australia with approximately 600 admissions annually, 95% of which are emergent, and 65% Indigenous. All-cause mortality, secondary healthcare utilisation and functional outcomes were measured by 6-minute walk distance (an indicator of functional status) and the home and community care (HACC) screening tool at 5 years. Sixty eight percent of the cohort had died at 5 years. Median age of death was 53 years with a median time to death of 604 days following ICU admission. There was increased secondary healthcare utilisation measured by emergency department presentations and hospital re-admissions, with a median 5.22 healthcare presentations per year alive. There is evidence of ongoing functional limitation with 6-minute walk distance at 5 years significantly less than that predicted, despite high scores on the HACC screening assessment suggesting virtually full resumption of basic and domestic activities of daily living. A critical illness is not an isolated event, and there is evidence of ongoing high secondary healthcare utilisation, reflecting a high burden of disease. Mortality in this cohort is higher than would be expected from international data, and at a young median age, suggesting significant loss of productive life years. In addition, there is evidence of ongoing morbidity, with higher rates of healthcare utilisation than comparable international studies. This has profound implications for healthcare planners due to the ongoing economic implications, and may suggest a need for increased primary healthcare resources to pre-emptively manage chronic disease and reduce the burden of healthcare utilisation at acute care facilities.1406 - Publication
Journal Article Men, hearts and minds: developing and piloting culturally specific psychometric tools assessing psychosocial stress and depression in central Australian Aboriginal men.(2016-02) ;Brown A ;Mentha R ;Howard M ;Rowley K ;Reilly R ;Paquet CO'Dea KThe health inequalities experienced by Aboriginal and Torres Strait Islander Australians are well documented but there are few empirical data outlining the burden, consequences, experience and expression of depressive illness. This paper seeks to address the lack of accessible, culturally specific measures of psychosocial stress, depression or quality of life developed for, and validated within, this population. Building on an extensive qualitative phase of research, a psychosocial questionnaire comprising novel and adapted scales was developed and piloted with 189 Aboriginal men across urban and remote settings in central Australia. With a view to refining this tool for future use, its underlying structure was assessed using exploratory factor analysis, and the predictive ability of the emergent psychosocial constructs assessed with respect to depressive symptomatology. The latent structure of the psychosocial questionnaire was conceptually aligned with the components of the a priori model on which the questionnaire was based. Regression modelling indicated that depressive symptoms were driven by a sense of injury and chronic stress and had a non-linear association with socioeconomic position. This represents the first community-based survey of psychosocial stress and depression in Aboriginal men. It provides both knowledge of, and an appropriate process for, the further development of psychometric tools, including quality of life, in this population. Further research with larger and more diverse samples of Aboriginal people is required to refine the measurement of key constructs such as chronic stress, socioeconomic position, social support and connectedness. The further refinement, validation against criterion-based methods and incorporation within primary care services is essential.1370 - Publication
Journal Article Panel 1: Epidemiology and Diagnosis.(2017-04-01) ;Homøe P ;Kværner K ;Casey JR ;Damoiseaux RAMJ ;van Dongen TMA ;Gunasekera H ;Jensen RG ;Kvestad E; Weinreich HMObjective To create a literature review between 2011 and June 1, 2015, on advances in otitis media (OM) epidemiology and diagnosis (including relevant audiology studies). Data Sources Electronic search engines (PubMed, EMBASE, and Cochrane Library) with a predefined search strategy. Review Methods Articles with appropriate epidemiologic methodology for OM, including acute mastoiditis and eustachian tube dysfunction. Items included OM worldwide and in high-risk populations, OM-related hearing loss, news in OM diagnostics, prenatal risk factors and comorbidities, postnatal risk factors, genetics, microbiological epidemiology, guidelines, and quality of life. Conclusions Diagnostic evidence and genetic studies are increasing; guidelines are introduced worldwide; and there is evidence of benefit of pneumococcal conjugate vaccines. New risk factors and comordities are identified in the study period, and quality of life is affected in children and their families. Implications for Practice Chronic suppurative OM occurs worldwide and contributes to lifelong hearing loss. Uniform definitions are still lacking and should be provided. An association between HIV and chronic suppurative OM has been found. Tympanometry is recommended for diagnosis, with or without pneumatic otoscopy. Video otoscopy, algorithms, and validated questionnaires may assist clinicians. Childhood obesity is associated with OM. Heritability accounts for 20% to 50% of OM diagnoses. OM-prone children seem to produce weaker immunologic responses to pneumococcal conjugate vaccines. Clinicians tend to individualize treatment without adhering to guidelines.1220 - Publication
Clinical Trial Protocol Study protocol: Australasian Registry of Severe Cutaneous Adverse Reactions (AUS-SCAR).(2022-08-17) ;James F ;Goh MSY ;Mouhtouris E ;Vogrin S ;Chua KYL ;Holmes NE ;Awad A ;Copaescu AM ;De Luca JF ;Zubrinich C ;Gin D ;Cleland H ;Douglas A ;Kern JS ;Katelaris CH ;Thien F ;Barnes S ;Yun J ;Tong W ;Smith WB ;Carr A ;Anderson T ;Legg A ;Bourke J ;Mackay LK ;Aung AK ;Phillips EJTrubiano JINTRODUCTION: Severe cutaneous adverse reactions (SCAR) are a group of T cell-mediated hypersensitivities associated with significant morbidity, mortality and hospital costs. Clinical phenotypes include Stevens-Johnson syndrome (SJS), toxic epidermal necrolysis (TEN), drug reaction with eosinophilia and systemic symptoms (DRESS) and acute generalised exanthematous pustulosis (AGEP). In this Australasian, multicentre, prospective registry, we plan to examine the clinical presentation, drug causality, genomic predictors, potential diagnostic approaches, treatments and long-term outcomes of SCAR in Australia and New Zealand. METHODS AND ANALYSIS: Adult and adolescent patients with SCAR including SJS, TEN, DRESS, AGEP and another T cell-mediated hypersensitivity, generalised bullous fixed drug eruption, will be prospectively recruited. A waiver of consent has been granted for some sites to retrospectively include cases which result in early mortality. DNA will be collected for all prospective cases. Blood, blister fluid and skin biopsy sampling is optional and subject to patient consent and site capacity. To develop culprit drug identification and prevention, genomic testing will be performed to confirm human leukocyte antigen (HLA) type and ex vivo testing will be performed via interferon-γ release enzyme linked immunospot assay using collected peripheral blood mononuclear cells. The long-term outcomes of SCAR will be investigated with a 12-month quality of life survey and examination of prescribing and mortality data. ETHICS AND DISSEMINATION: This study was reviewed and approved by the Austin Health Human Research Ethics Committee (HREC/50791/Austin-19). Results will be published in peer-reviewed journals and presented at relevant conferences. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12619000241134).4577 - Publication
Comparative Study Visual outcomes for remote Australian Aboriginal people after cataract surgery.(2001-04) ;Hewitt, A ;Verman, NGruen, RTo assess the visual outcomes and quality of life after cataract surgery in Aborig nal people and compare them with a case-matched population of non-Aborginal people living in remote and rural areas in the Top End of the Northern Territory. Patients living in remote areas of the Top End of the Northern Territory who underwent cataract surgery between 1994 and 1999 were identified from records at the three major hospitals in the region. Eighty-three patients were included in the study. Each patient underwent a complete ocular assessment and then was administered a standardized, field-tested, 12-item questionnaire concerning visual function. This was analyzed and the results of the Aboriginal and matched non-Aboriginal populations compared. Sixty one Aboriginal and 22 non-Aboriginal people from a total of 295 patients who underwent cataract surgery were included in the study. The two study groups were closely matched by sex, age at the time of surgery, time of follow up from surgery and the number who had undergone bilateral surgeryThe median preoperative visual acuity for the Aboriginal group was 6/60 against 6/24 of the non-Aboriginal group. After surgery, at the time of follow up, 26% of eyes in Aboriginal patients did not correct to 6/12 or better with pinhole approximation. Posterior capsule opacities were the most common principal postoperative cause for a deterioration of visual acuity in both groups. Postoperatve trauma was a common cause for a low best-corrected visual acuity n the Aboriginal group but not in the non-Aboriginal group. The majority (75.5%) of Aboriginal patients were satisfied with their operated eyes. Patients who were dissatisfied all had a visual acuity worse than 6/36. Aborigina patients reported worse visual function than did those in the non-Aboriginal group. Cataract surgery has a beneficial effect on the visual acuity and quality of life of Aboriginal and non-Aboriginal people. As compared to their non-Aboriginal counterparts, most Aboriginal people underwent surgery when they were legally blind, had a lower level of attained postoperative visual acuity and a high incidence of uncorrected refractive errors and posterior capsular opacification requiring laser capsulotomy. The positive mpact of cataract surgery on the lives of the majority of Aboriginal patients is highlighted, as is the need for continued postoperative follow up.1136