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BACKGROUND: The growth in online qualitative research and data collection provides several advantages for health service researchers and participants, including convenience and extended geographic reach. However, these online processes can also present unexpected challenges, including instances of participant fraud or scam behaviour. This study describes an incident of participant fraud identified during online focus group discussions and interviews for a PhD health services research project on paediatric neurodevelopmental care. METHODS: We aimed to recruit carers of Australian children with neurodevelopmental disorders. Potential participants were recruited via a publicly available social media advert on Facebook offering $50 AUD compensation. Those who expressed interest via email (n = 254) were sent a pre-interview Qualtrics survey to complete. We identified imposters at an early stage via inconsistencies in their self-reported geographical location and that captured by the survey as well as recognition of suspicious actions before, during and after focus group discussions and interviews. RESULTS: Interest in participation was unexpectedly high. We determined that all potential participants were likely imposters, posing as multiple individuals and using different IP addresses across Nigeria, Australia, and the United States. In doing so, we were able to characterise several "red flags" for identifying imposter participants, particularly those posing as multiple individuals. These comprise a combination of factors including large volumes and strange timings of email responses, unlikely demographic characteristics, short or vague interviews, a preference for nonvisual participation, fixation on monetary compensation, and inconsistencies in reported geographical location. Additionally, we propose several strategies to combat this issue such as providing proof of location or eligibility during recruitment and data collection, examining email and consent form patterns, and comparing demographic data with regional statistics. CONCLUSIONS: The emergent risk of imposter participants is an important consideration for those seeking to conduct health services research using qualitative approaches in online environments. Methodological design choices intended to improve equity and access for the target population may have an unintended consequence of improving access for fraudulent actors unless appropriate risk mitigation strategies are also employed. Lessons learned from this experience are likely to be valuable for novice health service researchers involved in online focus group discussions and interviews.
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Groupes de discussion , Recherche qualitative , Humains , Mâle , Femelle , Australie , Recherche sur les services de santé , Adulte , Enfant , Entretiens comme sujet , InternetRÉSUMÉ
INTRODUCTION: The Kansas City Cardiomyopathy Questionnaire (KCCQ), Seattle Angina Questionnaire (SAQ), and Minnesota Living with Heart Failure Questionnaire (MLHFQ) are widely used non-preference-based instruments that measure health-related quality of life (QOL) in people with heart disease. However, currently it is not possible to estimate quality-adjusted life-years (QALYs) for economic evaluation using these instruments as the summary scores produced are not preference-based. The MacNew-7D is a heart disease-specific preference-based instrument. This study provides different mapping algorithms for allocating utility scores to KCCQ, MLHFQ, and SAQ from MacNew-7D to calculate QALYs for economic evaluations. METHODS: The study included 493 participants with heart failure or angina who completed the KCCQ, MLHFQ, SAQ, and MacNew-7D questionnaires. Regression techniques, namely, Gamma Generalized Linear Model (GLM), Bayesian GLM, Linear regression with stepwise selection and Random Forest were used to develop direct mapping algorithms. Cross-validation was employed due to the absence of an external validation dataset. The study followed the Mapping onto Preference-based measures reporting Standards checklist. RESULTS: The best models to predict MacNew-7D utility scores were determined using KCCQ, MLHFQ, and SAQ item and domain scores. Random Forest performed well for item scores for all questionnaires and domain score for KCCQ, while Bayesian GLM and Linear Regression were best for MLHFQ and SAQ domain scores. However, models tended to over-predict severe health states. CONCLUSION: The three cardiac-specific non-preference-based QOL instruments can be mapped onto MacNew-7D utilities with good predictive accuracy using both direct response mapping techniques. The reported mapping algorithms may facilitate estimation of health utility for economic evaluations that have used these QOL instruments.
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Défaillance cardiaque , Qualité de vie , Humains , Mâle , Femelle , Enquêtes et questionnaires , Adulte d'âge moyen , Sujet âgé , Défaillance cardiaque/psychologie , Années de vie ajustées sur la qualité , Angine de poitrine/psychologie , Cardiomyopathies/psychologie , Algorithmes , Minnesota , PsychométrieRÉSUMÉ
OBJECTIVES: This review sought to identify the qualitative methods and techniques that researchers have used in the past decade to develop attributes and inform health-related discrete choice experiments (DCEs) surveys from a patient perspective. METHODS: The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for reporting systematic reviews. An adapted appraisal tool following guidelines for reporting qualitative research for quantitative instruments and criteria for attribute development in DCEs was applied for quality assessment and data extraction. A narrative approach was used to synthesize data. This examination included consideration of issues pertaining to sampling, data collection, data analysis, attribute list reduction, wording, methodological adaptations to capture patient preferences, and testing the pre-experimental design decisions of the DCE survey. RESULTS: Of 8505 articles identified for abstract screening, 680 were included for full-text screening, 36 of which met the inclusion criteria. Practices to improve methodological robustness included pre-data collection materials to inform instruments, data collection methods specific for decision-making scenarios, purposeful selection of data analysis methods to address the research question, and participants' involvement in reducing the list of attributes. Examples of methodological adaptations for patients were noted. CONCLUSIONS: DCEs have the potential to become a mixed-method approach in which the qualitative phase informs a reduced list of attributes for a survey, serves the predesign decisions of the experiment by testing trade-offs, overlapping, understandability, face, and content validity and provides explanations of the quantitative results. Establishing guidelines for using qualitative methods for DCE attribute development may help to broadly enhance the methodological robustness of DCEs.
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PURPOSE: To identify the key attributes of breast cancer follow-up care models preferred by cancer survivors in Australia. METHODS: A discrete choice experiment (DCE) was conducted to elicit preferences for attributes of breast cancer follow-up care. Respondents were presented with two hypothetical scenarios, known as choice sets, and asked to select a preference. Respondents were individuals living in Australia who were diagnosed with breast cancer within the past five years prior to survey completion and were recruited through the Breast Cancer Network of Australia and other community or consumer networks. Latent class modelling (LCM) approach under a random utility framework was used for the analysis. RESULTS: 123 breast cancer survivors completed the DCE survey. LCA revealed two latent classes, those with older age and lower quality of life (class 1) and younger women with higher quality of life (class 2). Class 2 preferred a care team comprising specialists, nurses and GPs and emphasised the importance of shared survivorship care plans. Class 1 remained neutral regarding the team's composition but was notably concerned about the out-of-pocket costs per consultation, a finding not seen in Class 2. CONCLUSIONS: Age and quality of life status are associated with patient preference for types and attributes of breast cancer follow-up care. The health system can work towards enhancing flexibility of follow-up care delivery, ultimately achieving person-centred care. IMPLICATIONS FOR CANCER SURVIVORS: Efforts need to be made by policymakers to ensure consumer preferences are taken into consideration to implement tailored person-centred follow-up care pathways.
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BACKGROUND: The parent-proxy paediatric chronic cough quality of life questionnaire (PC-QoL) is a commonly used measure of spillover quality of life in parents of children with chronic cough. To date, spillover health utility in these parents is not routinely estimated largely due to the lack of a suitable instrument. Their perspective is not included in economic evaluations of interventions for their children. We explored developing a health state classification system based on the PC-QoL for measuring health utility spill over in this population. METHODS: This study included PC-QoL 8-item responses of 653 parents participating in a prospective cohort study about paediatric chronic cough. Exploratory factor analysis (EFA) and Rasch analysis were used to examine dimensionality and select potential items and level structure. RESULTS: EFA indicated that the PC-QoL had one underlying domain. Rasch analysis indicated threshold disordering in all items which improved when items were collapsed from seven to four levels. Two demonstrated differential item functioning (DIF) by diagnosis or ethnicity and were excluded from the final scale. This scale satisfied Rasch assumptions of local independence and unidimensionality and demonstrated acceptable fit to the Rasch model. It was presented to and modified by an expert panel and a consumer panel. The resulting classification system had six items, each with four levels. DISCUSSION: The PC-QoL can conform to a Rasch model with minor modifications. It may be a good basis for the classification system of a child cough-specific PBM. A valuation study is required to estimate preference weights for each item and to estimate health utility in parents of children with chronic cough.
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Toux , Psychométrie , Qualité de vie , Humains , Enquêtes et questionnaires/normes , Toux/psychologie , Femelle , Mâle , Enfant , Maladie chronique , Études prospectives , Parents/psychologie , Enfant d'âge préscolaire , Adolescent , Analyse statistique factorielle , Adulte , État de santéRÉSUMÉ
Trauma-informed care practices are associated with a culture of safety following traumatic experiences, including medical trauma. An interactive, web-based training package ('Responsive CARE') was developed for voluntary uptake by paediatric burns health professionals to increase staff knowledge about trauma-informed practice. This paper reports on a mixed methods process evaluation conducted alongside a preliminary effectiveness study of 'Responsive CARE'. The process evaluation was conducted using The Consolidated Framework for Implementation Research (CFIR) and a logic model, to examine feasibility of both the intervention and implementation strategy. Health practitioners (including senior managers) delivering care to children and caregivers attending an outpatient burns service were eligible to enrol in 'Responsive CARE'. Qualitative interview data and quantitative metadata were used to evaluate the implementation outcomes (adoption, acceptability, fidelity, feasibility and preliminary effectiveness). Children and caregivers attending an outpatient service for change of burn wound dressing or burn scar management during the 3-month control or 3-month intervention period were eligible to enrol in the effectiveness study. The impact on child pain and distress, as well as cost, was investigated using a pretest-posttest design. Thirteen (from anticipated 50 enrolled) health professionals (all female) with mean 10 years (SD=11) of experience with paediatric burns hospital-based outpatient care completed an average of 65% (range 36% to 88%) of available content. Twenty-five semi-structured interviews were completed with health practitioners (21 female) and with 14 caregivers (11 female). Four themes were identified as influencing feasibility and acceptability of the intervention: 1) Keeping a trauma-informed lens; 2) Ways of incorporating trauma-informed care; 3) Working within system constraints; and 4) Being trauma-informed. Preliminary effectiveness data included 177 participants (median age 2 years, and median total body surface area burn 1%). Causal assumptions within the logic model were unable to be fully tested, secondary to lower-than-expected adoption and fidelity. We found no significant difference for pain, distress and per-patient hospital care costs between groups (pre- and post-intervention). Future implementation strategies should include organizational support to keep a trauma-informed lens and to incorporate trauma-informed principles within a medical model of care. Despite efforts to co-design a staff education intervention and implementation approach focused on stakeholder engagement, adaptations are indicated to both the intervention and implementation strategies to promote uptake highlighting the complexity of changing clinician behaviours.
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Brûlures , Personnel de santé , Humains , Brûlures/thérapie , Femelle , Enfant , Personnel de santé/enseignement et éducation , Mâle , Aidants/enseignement et éducation , Aidants/psychologie , Cicatrice/thérapie , Enfant d'âge préscolaire , Bandages , Adolescent , Adulte , Recherche qualitative , Soins ambulatoires/méthodesRÉSUMÉ
BACKGROUND: It is essential to consider the evidence of consumer preferences and their specific needs when determining which strategies to use to improve patient attendance at scheduled healthcare appointments. OBJECTIVES: This study aimed to identify key attributes and elicit healthcare consumer preferences for a healthcare appointment reminder system. METHODS: A discrete choice experiment was conducted in a general Australian population sample. The respondents were asked to choose between three options: their preferred reminder (A or B) or a 'neither' option. Attributes were developed through a literature review and an expert panel discussion. Reminder options were defined by four attributes: modality, timing, content and interactivity. Multinomial logit and mixed multinomial logit models were estimated to approximate individual preferences for these attributes. A scenario analysis was performed to estimate the likelihood of choosing different reminder systems. RESULTS: Respondents (n = 361) indicated a significant preference for an appointment reminder to be delivered via a text message (ß = 2.42, p < 0.001) less than 3 days before the appointment (ß = 0.99, p < 0.001), with basic details including the appointment cost (ß = 0.13, p < 0.10), and where there is the ability to cancel or modify the appointment (ß = 1.36, p < 0.001). A scenario analysis showed that the likelihood of choosing an appointment reminder system with these characteristics would be 97%. CONCLUSIONS: Our findings provide evidence on how healthcare consumers trade-off between different characteristics of reminder systems, which may be valuable to inform current or future systems. Future studies may focus on exploring the effectiveness of using patient-preferred reminders alongside other mitigation strategies used by providers.
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Background: The financial burden resulting from cancers on families is higher when it arises in young people compared with older adults. Previous research has provided insight into the financial toxicities associated with childhood cancer, but less is known about the efficacy of financial aid systems in reducing the financial burden on families. We conducted a scoping review to identify the determinants of success and failure of financial aid. Methods: Five databases were searched for articles published between January 1, 2000 and December 1, 2022. Dual processes were used to screen and select studies. Through thematic content analysis, we identified barriers and enablers of financial aid, categorised by country income level. Results: From 17 articles, which were evenly split between high-income countries and upper middle- to low-income countries, four major themes emerged: (1) accessibility of support, (2) delivery of support, (3) administration, and (4) psychosocial factors. Within these themes, the enablers identified were (1) support navigators, (2) establishing a direct contact between donors and beneficiaries, (3) implementation of digital solutions to improve outreach, and (4) using cultural and community values to encourage donor engagement. Conclusions: This scoping review identified the determinants of success and failure of financial aid in supporting families in the context of childhood, adolescent, and young adult (CAYA) cancers. By understanding the barriers and enablers identified in this review, organizations could develop pragmatic evidence-based care models and policies to ensure access to assistance is equitable and appropriate for families experiencing CAYA cancers.
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Tumeurs , Humains , Tumeurs/économie , Tumeurs/psychologie , Tumeurs/thérapie , Adolescent , Enfant , Jeune adulte , Adulte , Soutien financier , FemelleRÉSUMÉ
BACKGROUND: Livability is a concept commonly featured in health research to help shape public policy decisions and improve local place settings. Although widely used, it is a contested concept known for its ambiguity and inconsistency of measurements. Other criticisms include the lack of equity perspectives and the underrepresentation of people with disabilities and inhabitants of non-metropolitan places. OBJECTIVES: This review sought to identify the extent to which people with disabilities and non-metropolitan places are included in measurements of livability and to critically review and summarise i) livability definitions and uses, ii) livability places and populations, and iii) livability measurements. METHODS: The scoping review followed Arksey and O'Malley's methodological framework and the PRISMA extension for scoping reviews. The data extraction used meta-aggregation techniques to evaluate findings. A standardised mixed methods appraisal tool was used, and a novel classification of measurements was created. RESULTS: Seventy-seven articles were included, and 1955 measurements were extracted. The overarching findings were: i) livability is inconsistently defined and assessed by measuring the performance of related and independent domains, ii) the population sample or the studies' participants are often not disclosed, non-metropolitan settings are overlooked, and equity is not generally applied or operationalised in measurements, and iii) there is an extensive lack of measurements considering people with disabilities and diversity within disabilities. CONCLUSIONS: The assumptions of homogeneity in study populations in livability measurement literature overlook inequities experienced by people with disabilities and inhabitants of non-metropolitan settings. This review suggests recommendations for future research to assess livability from perspectives inclusive of human diversity.
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Personnes handicapées , Équité en santé , HumainsRÉSUMÉ
OBJECTIVE: Accurate assessment of child oral health is important for guiding economic evaluations and informing healthcare decision-making. Early Childhood Oral Health Impact Scale (ECOHIS-4D) is a preference-based instrument that measures the oral health-related quality of life of young children. The aim of this study was to compare the utility scores of ECOHIS-4D and Child Health Utility Index (CHU-9D), against an oral health indicator to evaluate which utility score corresponds better with the oral health indicator. METHOD: The ECOHIS-4D and CHU-9D were applied to 314 parent/child dyads from preschools in a primary healthcare setting in Perth, Western Australia. Four parameters were used to assess which instrument corresponds better with the oral health indicator (decayed, missing and filled teeth score-dmft score): (i) discrimination, the ability to discriminate between different clinical severity groups, (ii) external responsiveness, how much the utility values relate to the changes in dmft scores, (iii) correlation, the association between the two instruments and the related dimensions and (iv) differences in the utility values across the two instruments. RESULTS: Most participants (81%) were 2-6 years old, and nearly 50% had a dmft score <3. ECOHIS-4D demonstrated a superior ability to differentiate between dmft severity groups and respond to changes in dmft scores. A significant weak correlation was observed between dmft and ECOHIS-4D (-0.26, 95%, CI -0.36 to -0.15) compared to a non-significant very poor correlation between dmft and CHU-9D (0.01, 95% CI -0.12 to 0.10). The utility scores of the two instruments had relatively good agreement towards good health and weak agreement towards poor health. CONCLUSIONS: ECOHIS-4D, the oral health-specific instrument, is more sensitive in assessing children's oral health-related quality of life than the generic CHU-9D. Thus, ECOHIS-4D is more appropriate for utility estimates in economic evaluations of oral health-related interventions and resource allocation decision-making.
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Caries dentaires , Santé buccodentaire , Enfant , Humains , Enfant d'âge préscolaire , Qualité de vie , Santé de l'enfant , Australie occidentale , Niveau d'instruction , Enquêtes et questionnairesRÉSUMÉ
AIM: To identify and map evidence describing components of neurodevelopmental follow-up care for children with congenital heart disease (CHD). METHOD: This was a scoping review of studies reporting components of neurodevelopmental follow-up programmes/pathways for children with CHD. Eligible publications were identified through database searches, citation tracking, and expert recommendations. Two independent reviewers screened studies and extracted data. An evidence matrix was developed to visualize common characteristics of care pathways. Qualitative content analysis identified implementation barriers and enablers. RESULTS: The review included 33 studies. Twenty-one described individual care pathways across the USA (n = 14), Canada (n = 4), Australia (n = 2), and France (n = 1). The remainder reported surveys of clinical practice across multiple geographical regions. While heterogeneity in care existed across studies, common attributes included enrolment of children at high-risk of neurodevelopmental delay; centralized clinics in children's hospitals; referral before discharge; periodic follow-up at fixed ages; standardized developmental assessment; and involvement of multidisciplinary teams. Implementation barriers included service cost/resourcing, patient burden, and lack of knowledge/awareness. Multi-level stakeholder engagement and integration with other services were key drivers of success. INTERPRETATION: Defining components of effective neurodevelopmental follow-up programmes and care pathways, along with enhancing and expanding guideline-based care across regions and into new contexts, should continue to be priorities. WHAT THIS PAPER ADDS: Twenty-two different neurodevelopmental follow-up care pathways/programmes were published, originating from four countries. Twelve additional publications described broad practices for neurodevelopmental follow-up across regions Common attributes across eligibility, service structure, assessment processes, and care providers were noted. Studies reported programme acceptability, uptake, cost, and effectiveness. Implementation barriers included service cost/resourcing, patient burden, and lack of knowledge/awareness.
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Post-cure , Cardiopathies congénitales , Enfant , Humains , Cardiopathies congénitales/complications , Cardiopathies congénitales/thérapie , Australie , Canada , FranceRÉSUMÉ
BACKGROUND: Indigenous Australian children and adolescents experience profound levels of preventable dental disease. The application of silver fluoride (AgF) to active dental caries is a noninvasive alternative to traditional dental treatment approaches. There is particular utility among Indigenous children and young people with dental fear, who may not have access to timely or culturally safe dental service provisions. OBJECTIVE: The aims of this study are to: (1) assess levels of active dental caries among Indigenous children and young people in 6 Australian states and territories; (2) determine if an AgF intervention reduces levels of active disease over 12-24 months; (3) measure the impact of improved oral health on social and emotional well-being (SEWB) and oral health-related quality of life; and (4) calculate the cost-effectiveness of implementing such an initiative. METHODS: The study will use a 2-arm, parallel cluster randomized controlled trial design. Approximately 1140 Indigenous children and youth aged between 2 and 18 years will be recruited. Each state or territory will have 2 clusters. The intervention group will receive the AgF intervention at the start of the study, with the delayed intervention group receiving the AgF intervention 12 months after study commencement. The primary outcome will be the arrest of active carious lesions, with arrested caries defined as nonpenetration by a dental probe. Secondary outcomes will include SEWB, oral health-related quality of life, and dental anxiety, with covariates including dental behaviors (brushing and dental visits). Effectiveness measures for the economic evaluation will include the number of children and young people managed in primary oral health care without the need for specialist referral, changes in SEWB, the numbers and types of treatments provided, and caries increments. RESULTS: Participant recruitment will commence in May 2023. The first results are expected to be submitted for publication 1 year after a 24-month follow-up. CONCLUSIONS: Our findings have the potential to change the way in which active dental disease among Indigenous children and young people can be managed through the inclusion of specifically tailored AgF applications to improve dental health and SEWB delivered by Indigenous health care workers. Desired impacts include cost savings on expensive dental treatments; improved SEWB, nutrition, social, and learning outcomes; and improved quality of life for both children and young people and their caregivers and the broader Indigenous community. The AgF application could be easily implemented into the training program of Indigenous health workers and yield critical information in the management armamentarium of health and well-being recommendations for Australia's First Peoples. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/48558.
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BACKGROUND: Given the significant investment of governments and families into the provision of child dental care services in Australia, continued population oral health surveillance through national oral health surveys is imperative. OBJECTIVE: The aims of this study are to conduct a second National Child Oral Health Survey (NCOHS-2) to (1) describe the prevalence, extent, and impact of oral diseases in contemporary Australian children; (2) evaluate changes in the prevalence and extent of oral diseases in the Australian child population and socioeconomic subgroups since the first National Child Oral Health Study (NCOHS-1) in 2012-2013; and (3) use economic modeling to evaluate the burden of child oral disease from the NCOHS-1 and NCOHS-2 and to estimate the cost-effectiveness of targeted programs for high-risk child groups. METHODS: The NCOHS-2 will closely mimic the NCOHS-1 in being a cross-sectional survey of a representative sample of Australian children aged 5-14 years. The survey will comprise oral epidemiological examinations and questionnaires to elucidate associations between dental disease in a range of outcomes, including social and emotional well-being. The information will be analyzed within the context of dental service organization and delivery at national and jurisdictional levels. Information from the NCOHS-1 and NCOHS-2 will be used to simulate oral disease and its economic burden using both health system and household costs of childhood oral health disease. RESULTS: Participant recruitment for the NCOHS-2 will commence in February 2024. The first results are expected to be submitted for publication 6 months after NCOHS-2 data collection has been completed. Thematic workshops with key partners and stakeholders will also occur at this time. CONCLUSIONS: Regular surveillance of child oral health at an Australian level facilitates timely policy and planning of each state and territory's dental public health sector. This is imperative to enable the most equitable distribution of scarce public monies, especially for socially disadvantaged children who bear the greatest dental disease burden. The last NCOHS was conducted in 2012-2014, meaning that these data need to be updated to better inform effective dental health policy and planning. The NCOHS-2 will enable more up-to-date estimates of dental disease prevalence and severity among Australian children, with cost-effective analysis being useful to determine the economic burden of poor child dental health on social and emotional well-being and other health indicators. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/52233.
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BACKGROUND: The increasing global prevalence of atrial fibrillation (AF) has led to a growing demand for stroke prevention strategies, resulting in higher healthcare costs. High-quality economic evaluations of stroke prevention strategies can play a crucial role in maximising efficient allocation of resources. In this systematic review, we assessed the methodological quality of such economic evaluations. METHODS: We searched electronic databases of PubMed, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, and Econ Lit to identify model-based economic evaluations comparing the left atrial appendage closure procedure (LAAC) and oral anticoagulants published in English since 2000. Data on study characteristics, model-based details, and analyses were collected. The methodological quality was evaluated using the modified Economic Evaluations Bias (ECOBIAS) checklist. For each of the 22 biases listed in this checklist, studies were categorised into one of four groups: low risk, partial risk, high risk due to inadequate reporting, or high risk. To gauge the overall quality of each study, we computed a composite score by assigning + 2, 0, - 1 and - 2 to each risk category, respectively. RESULTS: In our analysis of 12 studies, majority adopted a healthcare provider or payer perspective and employed Markov Models with the number of health states varying from 6 to 16. Cost-effectiveness results varied across studies. LAAC displayed a probability exceeding 50% of being the cost-effective option in six out of nine evaluations compared to warfarin, six out of eight evaluations when compared to dabigatran, in three out of five evaluations against apixaban, and in two out of three studies compared to rivaroxaban. The methodological quality scores for individual studies ranged from 10 to - 12 out of a possible 24. Most high-risk ratings were due to inadequate reporting, which was prevalent across various biases, including those related to data identification, baseline data, treatment effects, and data incorporation. Cost measurement omission bias and inefficient comparator bias were also common. CONCLUSIONS: While most studies concluded LAAC to be the cost-effective strategy for stroke prevention in AF, shortcomings in methodological quality raise concerns about reliability and validity of results. Future evaluations, free of these shortcomings, can yield stronger policy evidence.
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Neurodevelopmental disorders are a significant cause of morbidity. Early detection of neurodevelopmental delay is essential for timely diagnosis and intervention, and it is therefore important to understand the preferences of parents and clinicians for engaging with neurodevelopmental surveillance and follow-up care. Discrete choice experiment (DCE) may be an appropriate method for quantifying these preferences. This review systematically examined how DCEs have been designed and delivered in studies examining neurodevelopmental care of children and identified the preferred attributes that have been reported. PubMed, Embase, CINAHL, and Scopus databases were systematically searched. Studies were included if they used DCE to elicit preferences for a neurodevelopmental follow-up program for children. Two independent reviewers conducted the title and abstract and full-text screening. Risk of bias was assessed using a DCE-specific checklist. Findings were presented using a narrative synthesis. A total of 6618 records were identified and 16 papers were included. Orthogonal (n=5) and efficient (n=5) experimental designs were common. There was inconsistent reporting of design-related features. Analysis was primarily completed using mixed logit (n=6) or multinomial logit (n=3) models. Several key attributes for neurodevelopmental follow-up care were identified including social, behavioral and emotional support, therapy, waiting time, and out-of-pocket costs. DCE has been successfully used as a preference elicitation method for neurodevelopmental-related care. There is scope for improvement in the design and analysis of DCE in this field. Nonetheless, attributes identified in these studies are likely to be important considerations in the design and implementation of programs for neurodevelopmental care.
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BACKGROUND: In Australia, the overall prevalence of liver disease is increasing. Maximising uptake of community screening programmes by understanding patient preferences is integral to developing consumer-centred care models for liver disease. Discrete choice experiments (DCEs) are widely used to elicit preferences for various healthcare services. Attribute development is a vital component of a well-designed DCE and should be described in sufficient detail for others to assess the validity of outcomes. Hence, this study aimed to create a list of potential attributes and levels which can be used in a DCE study to elicit preferences for chronic liver disease screening programmes. METHODS: Key attributes were developed through a multi-stage, mixed methods design. Focus groups were held with consumers and health care providers on attributes of community screening programmes for liver disease. Stakeholders then prioritised attributes generated from the focus group in order of importance via an online prioritisation survey. The outcomes of the prioritisation exercise were then reviewed and refined by an expert panel to ensure clinically meaningful levels and relevance for a DCE survey. RESULTS: Fifteen attributes were generated during the focus group sessions deemed necessary to design liver disease screening services. Outcomes of the prioritisation exercise and expert panel stages recognised five attributes, with three levels each, for inclusion in a DCE survey to elicit consumer preferences for community screening for liver disease. This study also highlights broader social issues such as the stigma around liver disease that require careful consideration by policy makers when designing or implementing a liver screening programme. CONCLUSIONS: The attributes and levels identified will inform future DCE surveys to understand consumer preferences for community screening programmes for liver disease. In addition, the outcomes will help inform the implementation of the LOCATE-NAFLD programme in real-world practice, and could be relevant for other liver and non-liver related chronic disease screening programmes.
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Personnel administratif , Exercice physique , Humains , Queensland , Australie , Groupes de discussionRÉSUMÉ
INTRODUCTION: The Dental Caries Utility Index (DCUI) is a new oral health-specific health state classification system for adolescents, consisting of 5 domains: pain/discomfort, difficulty eating food/drinking, worried, ability to participate in activities, and appearance. Each domain has 4 response levels. This study aims to generate an Australian-specific utility algorithm for the DCUI. METHODS: An online survey was conducted using a representative sample of the adult Australian general population. The discrete choice experiment (DCE) was used to elicit the preferences on 5 domains. Then, the latent utilities were anchored onto the full health-dead scale using the visual analogue scale (VAS). DCE data were modeled using conditional logit, and 2 anchoring procedures were considered: anchor based on the worst health state and a mapping approach. The optimal anchoring procedure was selected based on the model parsimony and the mean absolute error (MAE). RESULTS: A total of 995 adults from the Australian general population completed the survey. The conditional logit estimates on 5 dimensions and levels were monotonic and statistically significant, except for the second level of the "worried" and "appearance" domains. The mapping approach was selected based on a smaller MAE between the 2 anchoring procedures. The Australian-specific tariff of DCUI ranges from 0.1681 to 1. CONCLUSION: This study developed a utility algorithm for the DCUI. This value set will facilitate utility value calculations from the participants' responses for DCUI in economic evaluations of dental caries interventions targeted for adolescents. HIGHLIGHTS: Preference-based quality-of-life measures (PBMs), which consist of a health state classification system and a set of utility values (a scoring algorithm), are used to generate utility weights for economic evaluations.This study is the first to develop an Australian utility value set for the Dental Caries Utility Index (DCUI), a new oral health-specific classification system for adolescents.The availability of a utility value set will enable using DCUI in economic evaluations of oral health interventions targeted for adolescents and may ultimately lead to more effective and efficient planning of oral health care services.
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Caries dentaires , État de santé , Adulte , Adolescent , Humains , Australie , Caries dentaires/épidémiologie , Années de vie ajustées sur la qualité , Qualité de vie , Enquêtes et questionnairesRÉSUMÉ
BACKGROUND: Heart failure is a leading cause of mortality and morbidity worldwide, and Atrial fibrillation (AF) is among many modifiable risk factors for heart failure. No estimates are available on the magnitude of the burden of heart failure associated with AF, and this study estimated the global, regional, and national burdens associated with AF. METHODS: We used the comparative risk assessment method to estimate the disease burden in terms of prevalence and years lived with disability (YLD). The population-attributable fraction for heart failure and AF was calculated from prevalence estimates of AF and the recalculated relative risks of heart failure associated with AF from a systematic review summarising the longitudinal association between AF and outcomes. The burden of heart failure was retrieved from the Global Burden of Disease database. RESULTS: Globally, 2.6% (95% uncertainty interval 1.3 to 4.7%) of the burden of heart failure is associated with AF. This was 1.5 (95% UI 0.6 to 3.2) million people in 2019, a 49.8% increase from 1990. The highest prevalence was from South-East Asia, East Asia and Oceania. The highest YLD was estimated for Central Europe, Eastern Europe and Central Asia. High-income countries showed a sharp decline in the age standardised prevalence and YLD rates from 1990 to 2019. CONCLUSION: The burden of heart failure associated with AF has increased substantially over the past two decades despite the advances in AF management. However, falling prevalence and YLD rates of heart failure associated with AF in high-income countries over time indicate that reducing this burden is possible.
Sujet(s)
Fibrillation auriculaire , Défaillance cardiaque , Humains , Fibrillation auriculaire/diagnostic , Fibrillation auriculaire/épidémiologie , Défaillance cardiaque/diagnostic , Défaillance cardiaque/épidémiologie , Coûts indirects de la maladie , Europe , RevenuRÉSUMÉ
BACKGROUND: Bronchiectasis, a previously neglected condition, now has renewed research interest. There are a few systematic reviews that have reported on the economic and societal burden of bronchiectasis in adults, but none have reported on children. We undertook this systematic review to estimate the economic burden of bronchiectasis in children and adults. RESEARCH QUESTION: What is the health care resource utilization and economic burden of bronchiectasis in adults and children? STUDY DESIGN AND METHODS: We performed a systematic review identifying publications from Embase, PubMed, Web of Science, Cochrane (trials, reviews, and editorials), and EconLit about the economic burden and health care utilization in adults and children with bronchiectasis between January 1, 2001, and October 10, 2022. We used a narrative synthesis approach and estimated aggregate costs for several countries. RESULTS: We identified 53 publications reporting on the economic burden and/or health care utilization of people with bronchiectasis. Total annual health care costs per adult patient ranged from 2021 $3,579 to $82,545 USD and were predominantly driven by hospitalization costs. Annual indirect costs including lost income because of illness (reported in only five studies) ranged from $1,311 to $2,898 USD. Total health care costs in children with bronchiectasis were $23,687 USD annually in the one study that estimated them. Additionally, one publication found that children with bronchiectasis missed 12 school days per year. We estimated aggregate annual health care costs for nine countries, ranging from $101.6 million per year in Singapore to $14.68 billion per year in the United States. We also estimated the aggregate cost of bronchiectasis in Australian children to be $17.77 million per year. INTERPRETATION: This review highlights the substantial economic burden of bronchiectasis for patients and health systems. To our knowledge, it is the first systematic review to include the costs for children with bronchiectasis and their families. Future research to examine the economic impact of bronchiectasis in children and economically disadvantaged communities, and to further understand the indirect burden of bronchiectasis on individuals and the community, is needed.
Sujet(s)
Dilatation des bronches , Coûts indirects de la maladie , Adulte , Enfant , Humains , États-Unis , Stress financier , Australie , Coûts des soins de santé , Dilatation des bronches/épidémiologieRÉSUMÉ
The extent of the preventable burden of ischaemic stroke associated with atrial fibrillation (AF) remains uncertain to date. To address this knowledge gap, we utilised the comparative risk assessment methodology to estimate the burden of ischaemic stroke associated with AF at both global and regional levels. The population attributable fraction for ischaemic stroke and AF was obtained from published literature, while data on the prevalence, incidence, deaths, and disability-adjusted life years (DALY) associated with ischaemic stroke were sourced from the Global Burden of Disease study database. Our analysis revealed that in 2019, globally, there were an estimated 0.7 (95% uncertainty interval [UI] of 0.55 to 0.83) million incident cases, 6.9 (5.81 to 8.12) million prevalence cases, 0.3 0.25 to 0.34) million deaths and 5.7 (4.91 to 6.57) million DALY resulting from ischaemic stroke associated with AF. The age-standardised death and DALY rates declined between 2009 and 2019 in all regions to varying degrees. Conversely, the age-standardised incidence and prevalence rates reduced only in high-income countries, Central Europe, Eastern Europe and Central Asia and Latin America and Caribbean regions. It is likely that our findings under-estimated the true burden of ischaemic stroke associated with AF due to limitations such as the use of a fixed population attributable fraction and poor quality of data. Nevertheless, we believe that our estimates provide valuable insights and highlight the urgent need for optimised management of AF through the implementation of efficacious interventions. Such efforts can help reduce the occurrence of preventable ischaemic strokes.