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1.
Qual Life Res ; 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38630166

RESUMO

BACKGROUND: The second version of the Short-Form 6-Dimension (SF-6Dv2) classification system has recently been developed. The objective of this study was to develop a value set for SF-6Dv2 based on the societal preferences of a general population in the capital of Iran. METHODS: A representative sample of the capital of Iran (n = 3061) was recruited using a stratified multistage quota sampling technique. Face-to-face interviews were conducted using binary choice sets from the international valuation protocol of the discrete choice experiment with duration. The conditional logit was used to estimate the final value set, and a latent class model was employed to assess heterogeneity of preferences. RESULTS: Coefficients generated from the models were logically consistent and significant. The best model was the one that included an additional interaction term for cases where one or more dimensions reached their most severe levels. It provides a value set with logical consistent coefficients and the lowest percentage of worse than death health states. Predicted values for the SF-6Dv2 were within the range of - 0.796-1. Pain dimension had the largest impact on utility decrement, whereas vitality had the least impact. The presence of preference heterogeneity was evident, and the Bayesian Information Criterion indicated the optimal fit for a latent class model with two classes. CONCLUSION: This study provided the SF-6Dv2 value set for application in the context of Iran. This value set will facilitate the use of the SF-6Dv2 instrument in health economic evaluations and clinical settings.

2.
Patient ; 2024 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-38662323

RESUMO

This paper focuses on survey administration and data collection methods employed for stated-preference studies in health applications. First, it describes different types of survey administration methods, encompassing web-based surveys, face-to-face (in-person) surveys, and mail surveys. Second, the concept of sampling frames is introduced, clarifying distinctions between the target population and survey frame population. The discussion then extends to different types of sampling methods, such as probability and non-probability sampling, along with an evaluation of potential issues associated with different sampling methods within the context of health preference research. Third, the paper provides information about different recruitment methods, including web-surveys, leveraging patient groups, and in-clinic recruitment. Fourth, a crucial aspect addressed is the calculation of response rate, with insights into determining an adequate response rate and strategies to improve response rates in stated-preference surveys. Lastly, the paper concludes by discussing data management plans and suggesting insights for future research in this field. In summary, this paper examines the nuanced aspects of survey administration and data collection methods in stated-preference studies, offering valuable guidance for researchers and practitioners in the health domain.

3.
Value Health ; 2024 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-38467188

RESUMO

OBJECTIVES: The EQ-5D-Y-5L is a generic preference-based measure of health-related quality of life for children. This study aimed to describe the distributional properties, test-retest reliability, and convergent validity of the EQ-5D-Y-5L in children with intellectual disability (ID). METHODS: Caregivers of children with ID (aged 4 to 18 years) completed an online survey, including a proxy-report EQ-5D-Y-5L, the Quality-of-life Inventory-Disability, and disability-appropriate measures corresponding to the EQ-5D dimensions: mobility, self-care (SC), usual activities (UA), pain/discomfort (PD), and worry/sadness/unhappiness. Twenty-one participants repeated the EQ-5D-Y-5L a few weeks later. Test-retest reliability was computed using weighted kappa and intraclass correlation coefficients, and convergent validity using Spearman's and Pearson's correlation coefficients. RESULTS: Caregivers of 234 children completed the survey, with <1% missing values. Only 1.7% reported "no problems" on all dimensions (11111). The dimensions with the lowest percentage of "no problems" were SC and UA (both 8%). Test-retest reliability coefficients were fair to substantial for 4 dimensions (weighted kappa .30 to .79) but low for PD and overall health, as measured by the visual analog scale (EQ-VAS). Convergent validity was strong (Spearman's correlation .65 to .87) for mobility, SC, and PD; moderate to strong for worry/sadness/unhappiness (.47 to .60) and the EQ-VAS (Pearson's correlation .49); and weak to moderate for UA (.21 to .52). CONCLUSIONS: Convergent validity was generally good; test-retest reliability varied. Children with ID had lower scores on SC and UA than other populations, and their EQ-VAS could fluctuate greatly, indicating poorer and less stable health-related quality of life.

4.
Eur J Health Econ ; 2024 Mar 14.
Artigo em Inglês | MEDLINE | ID: mdl-38483665

RESUMO

BACKGROUND: Cost-utility analysis typically relies on preference-based measures (PBMs). While generic PBMs are widely used, disease-specific PBMs can capture aspects relevant for certain patient populations. Here the EORTC QLU-C10D, a cancer-specific PBM based on the QLQ-C30, is validated using Dutch trial data with the EQ-5D-3L as a generic comparator measure. METHODS: We retrospectively analysed data from four Dutch randomised controlled trials (RCTs) comprising the EORTC QLQ-C30 and the EQ-5D-3L. Respective Dutch value sets were applied. Correlations between the instruments were calculated for domains and index scores. Bland-Altman plots and intra-class correlations (ICC) displayed agreement between the measures. Independent and paired t-tests, effect sizes and relative validity indices were used to determine the instruments' performance in detecting clinically known-group differences and health changes over time. RESULTS: We analysed data from 602 cancer patients from four different trials. In overall, the EORTC QLU-C10D showed good relative validity with the EQ-5D-3L as a comparator (correlations of index scores r = 0.53-0.75, ICCs 0.686-0.808, conceptually similar domains showed higher correlations than dissimilar domains). Most importantly, it detected 63% of expected clinical group differences and 50% of changes over time in patients undergoing treatment. Both instruments showed poor performance in survivors. Detection rate and measurement efficiency were clearly higher for the QLU-C10D than for the EQ-5D-3L. CONCLUSIONS: The Dutch EORTC QLU-C10D showed good comparative validity in patients undergoing treatment. Our results underline the benefit that can be achieved by using a cancer-specific PBM for generating health utilities for cancer patients from a measurement perspective.

6.
Health Expect ; 27(1): e13988, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38351633

RESUMO

INTRODUCTION: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. METHODS: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. RESULTS: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. CONCLUSIONS: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in-person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in-person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in-person care. PATIENT OR PUBLIC CONTRIBUTION: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production.


Assuntos
Pessoas com Deficiência , Humanos , Austrália , Pesquisa Qualitativa
7.
Qual Life Res ; 33(3): 831-841, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38183563

RESUMO

PURPOSE: In this study, we developed Danish utility weights for the European Organisation for Research and Treatment of Cancer (EORTC) QLU-C10D, a cancer-specific utility instrument based on the EORTC QLQ-C30. METHODS: Following a standardized methodology, 1001 adult participants from the Danish general population were quota-sampled and completed a cross-sectional web-based survey and discrete choice experiment (DCE). In the DCE, participants considered 16 choice sets constructed from the key 10 dimensions of the QLU-C10D and chose their preferred health state for each one. Utility weights were calculated using conditional logistic regression with correction for non-monotonicity. RESULTS: The sample (n = 1001) was representative of the Danish general population with regard to age and gender. The domains with the largest utility decrements, i.e., the domains with the biggest impact on health utility, were physical functioning (- 0.224), pain (- 0.160), and role functioning (- 0.136). The smallest utility decrements were observed for the domains lack of appetite (- 0.024), sleep disorders (- 0.057), and fatigue (- 0.064). Non-monotonicity of severity levels was observed for the domains sleep disturbances, lack of appetite, and bowel problems. Deviations from monotonicity were not statistically significant. CONCLUSION: The EORTC QLU-C10D is a relatively new multi-attribute utility instrument and is a promising cancer-specific health technology assessment candidate measure. The country-specific Danish utility weights from this study can be used for cost-utility analyses in Danish patients and for comparison with other country-specific utility data.


Assuntos
Neoplasias , Qualidade de Vida , Adulto , Humanos , Qualidade de Vida/psicologia , Estudos Transversais , Inquéritos e Questionários , Modelos Logísticos , Dinamarca
8.
BMJ Open ; 14(1): e079077, 2024 01 12.
Artigo em Inglês | MEDLINE | ID: mdl-38216187

RESUMO

BACKGROUND: Adverse perinatal outcomes such as preterm, small for gestational age, low birth weight, congenital anomalies, stillbirth and neonatal death have devastating impacts on individuals, families and societies, with significant lifelong health implications. Despite extensive knowledge of the significant and lifelong health implications of adverse perinatal outcomes, information on the economic burden is limited. Estimating this burden will be crucial for designing cost-effective interventions to reduce perinatal morbidity and mortality. Thus, we will quantify the economic burden of adverse perinatal outcomes from births to age 5 years in high-income countries. METHODS AND ANALYSIS: A systematic review of all primary studies published in English in peer-reviewed journals on the economic burden for at least one of the adverse perinatal outcomes in high-income countries from 2010 will be searched in databases-MEDLINE (Ovid), EconLit, CINAHL (EBSCO), Embase (Ovid) and Global Health (Ovid). We will also search using Google Scholar and snowballing of the references list of included articles. The search terms will include three main concepts-costs, adverse perinatal outcome(s) and settings. We will use the Consolidated Health Economics Evaluation Reporting Standards 2022 and 17 criteria from the critical appraisal of cost-of-illness studies to assess the quality of each study. We will report the findings based on the Preferred Reporting Items for Systematic Reviews and Meta-analyses 2020 statement. Costs will be converted into a common currency (US dollar), and we will estimate the pooled cost and subgroup analysis will be done. The reference lists of included papers will be reviewed. ETHICS AND DISSEMINATION: This systematic review will not involve human participants and requires no ethical approval. The results of this review will be published in a peer-reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42023400215.


Assuntos
Estresse Financeiro , Renda , Pré-Escolar , Feminino , Humanos , Recém-Nascido , Gravidez , Parto , Natimorto , Revisões Sistemáticas como Assunto/métodos , Lactente
9.
Stud Health Technol Inform ; 310: 1519-1521, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38269725

RESUMO

The methods and strategies utilised to facilitate focus group discussion within a co-design context have a fundamental impact on the opportunity for participants to actively engage with the content. This is a description of the strategies our project utilized including visual prompts and preparation guide to assist both service users and staff participants facilitate access to concepts discussed within our focus group sessions.


Assuntos
Grupos Focais , Humanos
10.
Value Health ; 27(2): 190-198, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38043713

RESUMO

OBJECTIVES: The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers. METHODS: A proxy report EQ-5D-Y-5L was administered to caregivers of children with ID. Using cognitive think-aloud interviewing, participants were encouraged to provide the reasoning for their choices, assess the questions' relevance, comprehensibility, and comprehensiveness, and comment on the tool's strengths and weaknesses. Qualitative content analysis used both directed (deductive) and conventional (inductive) methods. RESULTS: There were 28 interviews with 30 caregivers of children with ID (aged 8-22 years, 17 boys, with autism spectrum disorder, cerebral palsy, Down syndrome, and rare genetic disorders). The EQ-5D-Y-5L was considered clear, concise, and largely relevant, but insufficiently comprehensive for this population. Interviewees sought clarification of the definition of HRQoL, whether it included unchanging impairments (vs fluctuating health states), and what basis of comparison to use (child or peer). Many interviewees suggested inclusion of questions for other domains, including communication and social engagement, equipment and human supports required, and a wider range of mental health questions. CONCLUSIONS: The study suggests that further work is required to ensure accurate responses to the EQ-5D-Y-5L from caregivers of children with ID and to describe these children adequately.


Assuntos
Transtorno do Espectro Autista , Deficiência Intelectual , Masculino , Feminino , Criança , Humanos , Qualidade de Vida/psicologia , Inquéritos e Questionários , Psicometria , Reprodutibilidade dos Testes
11.
Patient ; 17(1): 53-64, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37985620

RESUMO

OBJECTIVES: No guidance currently exists as to the cognition threshold beyond which self-reported quality of life for older people with cognitive impairment and dementia is unreliable. METHODS: Older aged care residents (≥ 65 years) were randomly assigned to complete the EQ-5D-5L in computer-based (eye movements were tracked) or hard copy (participants were encouraged to 'think aloud') format. Cognition was assessed using the Mini-Mental State Examination (MMSE). Think aloud and eye tracking data were analysed by two raters, blinded to MMSE scores. At the participant level, predefined criteria were used to assign traffic light grades (green, amber, red). These grades indicate the extent to which extracted data elements provided evidence of self-report reliability. The MMSE-defined cognition threshold was determined following review of the distributions of assigned traffic light grades. RESULTS: Eighty-one residents participated and provided complete data (38 eye tracking, 43 think aloud). In the think aloud cohort, all participants with an MMSE score ≤ 23 (n = 10) received an amber or red grade, while 64% of participants with an MMSE score ≥ 24 (21 of 33) received green grades. In the eye tracking cohort, 68% of participants with an MMSE score ≥ 24 (15 of 22) received green grades. Of the 16 eye tracking participants with an MMSE score ≤ 23, 14 (88%) received an amber or red grade. CONCLUSIONS: Most older residents with an MMSE score ≥ 24 have sufficient cognitive capacity to self-complete the EQ-5D-5L. More research is needed to better understand self-completion reliability for other quality-of-life instruments in cognitively impaired populations.


Assuntos
Cognição , Autorrelato , Idoso , Humanos , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes
12.
Pharmacoeconomics ; 42(2): 177-198, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37945778

RESUMO

OBJECTIVES: We aimed to synthesise knowledge on the relative social value of child and adult health. METHODS: Quantitative and qualitative studies that evaluated the willingness of the public to prioritise treatments for children over adults were included. A search to September 2023 was undertaken. Completeness of reporting was assessed using a checklist derived from Johnston et al. Findings were tabulated by study type (matching/person trade-off, discrete choice experiment, willingness to pay, opinion survey or qualitative). Evidence in favour of children was considered in total, by length or quality of life, methodology and respondent characteristics. RESULTS: Eighty-eight studies were included; willingness to pay (n = 9), matching/person trade-off (n = 12), discrete choice experiments (n = 29), opinion surveys (n = 22) and qualitative (n = 16), with one study simultaneously included as an opinion survey. From 88 studies, 81 results could be ascertained. Across all studies irrespective of method or other characteristics, 42 findings supported prioritising children, while 12 provided evidence favouring adults in preference to children. The remainder supported equal prioritisation or found diverse or unclear views. Of those studies considering prioritisation within the under 18 years of age group, nine findings favoured older children over younger children (including for life saving interventions), six favoured younger children and five found diverse views. CONCLUSIONS: The balance of evidence suggests the general public favours prioritising children over adults, but this view was not found across all studies. There are research gaps in understanding the public's views on the value of health gains to very young children and the motivation behind the public's views on the value of child relative to adult health gains. CLINICAL TRIAL REGISTRATION: The review is registered at PROSPERO number: CRD42021244593. There were two amendments to the protocol: (1) some additional search terms were added to the search strategy prior to screening to ensure coverage and (2) a more formal quality assessment was added to the process at the data extraction stage. This assessment had not been identified at the protocol writing stage.


Assuntos
Qualidade de Vida , Valores Sociais , Criança , Adulto , Humanos , Adolescente , Pré-Escolar , Lista de Checagem , Pesquisa Qualitativa
13.
Digit Health ; 9: 20552076231211283, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37936961

RESUMO

Telepractice has existed for decades, but as a result of the COVID-19 pandemic, it gained value and increased desirability across the disability service and health sectors, as a mitigation strategy for the viral transmission risk. The increased desirability of telepractice encouraged organisations to invest and correspondingly enhance access to services delivered remotely via digital technology including allied health therapy interventions. The investment and uptake of telepractice provided greater learning opportunities and ability to investigate telepractice implementation in specific contexts such as disability services, enabling service providers the ability to tailor to specific population needs. Methods: This study investigated the experience of telepractice implementation during the COVID-19 pandemic from 13 allied health clinicians and managers of disability organisations across Australia between November 2021 and February 2022. A contextualist and critical realist theory was applied through the study, with reflective thematic analysis used as the data analysis method and findings described using a metaphor method centring on diamond formation. The method selection aimed to produce findings grounded in qualitative methodology and methods while remaining accessible to the disability community. Results: An exploration and analysis of the data by the authors identified six themes addressing the experiences of participants and used the metaphor of diamond formation to describe changes in allied health clinicians and disability organisations during the COVID-19 influenced telepractice implementation. Conclusion: The allied health clinicians and managers who participated in this study demonstrated an overall sense of hope that telepractice would be a viable and sustainable delivery pathway for services in the future. This article endorses the integration of a planned telepractice delivery pathway that capitalises on the momentum created by the COVID-19 pandemic in a purposeful and accessible way that looks to enhance rather than replace current practices.

14.
PLoS One ; 18(11): e0290528, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37972118

RESUMO

OBJECTIVE: To investigate public willingness to share sensitive health information for research, health policy and clinical practice. METHODS: A total of 1,003 Australian respondents answered an online, attribute-driven, survey in which participants were asked to accept or reject hypothetical choice sets based on a willingness to share their health data for research and frontline-medical support as part of an integrated health system. The survey consisted of 5 attributes: Stakeholder access for analysis (Analysing group); Type of information collected; Purpose of data collection; Information governance; and Anticipated benefit; the results of which were analysed using logistic regression. RESULTS: When asked about their preference for sharing their health data, respondents had no preference between data collection for the purposes of clinical practice, health policy or research, with a slight preference for having government organisations manage, govern and curate the integrated datasets from which the analysis was being conducted. The least preferred option was for personal health records to be integrated with insurance records or for their data collected by privately owned corporate organisations. Individuals preferred their data to be analysed by a public healthcare provider or government staff and expressed a dislike for any private company involvement. CONCLUSIONS: The findings from this study suggest that Australian consumers prefer to share their health data when there is government oversight, and have concerns about sharing their anonymised health data for clinical practice, health policy or research purposes unless clarity is provided pertaining to its intended purpose, limitations of use and restrictions to access. Similar findings have been observed in the limited set of existing international studies utilising a stated preference approach. Evident from this study, and supported by national and international research, is that the establishment and preservation of a social license for data linkage in health research will require routine public engagement as a result of continuously evolving technological advancements and fluctuating risk tolerance. Without more work to understand and address stakeholder concerns, consumers risk being reluctant to participate in data-sharing and linkage programmes.


Assuntos
Política de Saúde , Registros de Saúde Pessoal , Humanos , Austrália , Disseminação de Informação , Inquéritos e Questionários
15.
Health Expect ; 2023 Nov 21.
Artigo em Inglês | MEDLINE | ID: mdl-37990612

RESUMO

INTRODUCTION: Telepractice has the potential to align with the directive to reduce inequalities by United Nations Sustainable Development Goal 10. Telepractice additionally addresses a national digital health strategic plan for accessible digitally enabled models of care. To plan improvements, it is essential to understand the experience of telepractice for people with disability, which may be achieved through an approach such as journey mapping. The current article provides both a disability-specific case study and a methodological guide for the inclusion of customers and clinicians in the meaningful redevelopment of services. The Perth, Australia-based case study aimed to gain insights into the experience of telepractice for people with disability. The methodological aim describes using co-design to produce a journey map in collaboration with customers and clinicians, for potential replication in a wide range of health and social care contexts. METHOD: Interview transcripts gathered from a cohort of customer participants (n = 17) were used to inform the journey map. A group of customers (n = 5) and clinicians plus one manager (n = 5) distributed the findings onto a customer experience journey map during a co-design workshop. The journey map describes the emotional experience and actions taken, along five phases of a timeline through telepractice service interactions: (1) before, (2) selecting telepractice, (3) telepractice preparation, (4) during telepractice sessions and (5) after. RESULTS: A journey map visualisation of customer experiences was produced that identified strengths of telepractice service delivery (flexibility) while noting challenges (with technology) as opportunities for improvement. The consensus of participants was the desire to have access to telepractice currently and in the future, in addition to in-person delivery. CONCLUSION: These findings are valuable in the context of advocating for the incorporation of customers and clinicians through co-design workshops in the content analysis and creation of a journey map that is representative of the lived experience of accessing telepractice services. PATIENT OR PUBLIC CONTRIBUTION: The paper forms part of a larger co-design process that included customer participants throughout the design and planning of the project, inclusion of a peer researcher and the co-designers in the workshops, journey map and this article production.

16.
BMC Public Health ; 23(1): 1944, 2023 10 07.
Artigo em Inglês | MEDLINE | ID: mdl-37805455

RESUMO

BACKGROUND: Excessive worry is an invisible disruptive force that has adverse health outcomes and may advance to other forms of disorder, such as anxiety or depression. Addressing worry and its influences is challenging yet crucial for informing public health policy. METHODS: We examined parents' worries, influences, and variability before and during COVID-19 pandemic and across geography. Parents (n = 340) and their primary school-aged children from five Australian states completed an anonymous online survey in mid-2020. After literature review, we conceptualised the influences and performed a series of regression analyses. RESULTS: Worry levels and the variables contributing to parents' worry varied before to during the pandemic. The proportion of parents who were "very worried all the time" increased by 14.6% in the early days of the pandemic. During the pandemic, ethnic background modified parents' worry and parents' history of daily distress symptoms was a significant contributor (p < 0.05). Excessive exposure to news remained significant both before and during the pandemic. The primary predictor of parents' worry before COVID-19 was perceived neighbourhood safety, while the main predictor during COVID-19 was financial risk due to income change. Some variable such as neighbourhood safety and financial risk varied in their contribution to worry across geographical regions. The proportion of worried children was higher among distraught parents. CONCLUSION: Parents' worry during the health pandemic was not triggered by the health risks factors but by the financial risk due to income change. The study depicts inequality in the impact of COVID-19 by ethnic background. Different policies and reported virus case numbers across states may have modified the behaviour of variables contributing to the geography of parents' worry. Exposure to stressors before the COVID-19 pandemic may have helped parents develop coping strategies during stressful events. Parents are encouraged to limit their exposure to stressful news. We advocate for parents-specific tailored policies and emphasise the need for access to appropriate mental health resources for those in need. Advancing research in geographical modelling for mental health may aid in devising much-needed location-targeted interventions and prioritising resources in future events.


Assuntos
COVID-19 , Criança , Humanos , Austrália/epidemiologia , Pandemias , Ansiedade/epidemiologia , Pais , Política Pública
17.
PLoS One ; 18(9): e0290549, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37672515

RESUMO

AIMS: Patients with chronic health conditions not responding to conventional treatment can access medicinal cannabis (MC) prescriptions from clinicians in Australia. We aimed to assess overall health-related quality of life (HRQL), pain, fatigue, sleep, anxiety, and depression in a large real-world sample of patients accessing prescribed medicinal cannabis. We hypothesized that all patient-reported outcomes (PROs) would improve from baseline to 3-months. METHODS: The QUEST Initiative is a large prospective multicenter study of patients with any chronic health condition newly prescribed medicinal cannabis between November 2020 and December 2021. Eligible patients were identified by 120 clinicians at medical centers across six Australian states. Consenting participants completed the EuroQol Group EQ-5D-5L health status questionnaire; European Organization for Research & Treatment of Cancer Quality of Life questionnaire (QLQ-C30); Patient-Reported Outcomes Measurement Information System (PROMIS) Short Forms in Fatigue and Sleep Disturbance, and the Depression Anxiety Stress Scale (DASS-21) before starting therapy, at 2-weeks titration, then monthly for 3-months. RESULTS: Of the 2762 consenting participants, 2327 completed baseline and at least one follow-up questionnaire. Ages ranged between 18-97 years (mean 51y; SD = 15.4), 62.8% were female. The most commonly treated conditions were chronic pain (n = 1598/2327; 68.7%), insomnia (n = 534/2327; 22.9%), generalized anxiety (n = 508/2327; 21.5%), and mixed anxiety and depression (n = 259/2327; 11%). Across the whole cohort both EQ-5D-5L utility scores and QLQ-C30 summary scores showed clinically meaningful improvement in HRQL from baseline to mean follow-up with d = 0.54 (95%CI:0.47 to 0.59) and d = 0.64 (95%CI:0.58 to 0.70) respectively; and clinically meaningful improvement in fatigue (d = 0.54; 95%CI:0.48 to 0.59). There was clinically meaningful reduction of pain for those with chronic pain (d = 0.65; 95%CI:0.57 to 0.72); significant improvements for those with moderate to extremely severe anxiety (X2 = 383; df = 4; p<0.001) and depression (X2 = 395; df = 4; p<0.001); and no changes in sleep disturbance. CONCLUSIONS: We observed statistically significant, clinically meaningful improvements in overall HRQL and fatigue over the first 3-months in patients with chronic health conditions accessing prescribed medical cannabis. Anxiety, depression, and pain also improved over time, particularly for those with corresponding health conditions. The study continues to follow-up patients until 12-months to determine whether improvements in PROs are maintained long-term. TRAIL REGISTRATION: Study registration - Australian New Zealand Clinical Trials Registry: ACTRN12621000063819. https://www.australianclinicaltrials.gov.au/anzctr/trial/ACTRN12621000063819.


Assuntos
Dor Crônica , Maconha Medicinal , Humanos , Feminino , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Masculino , Qualidade de Vida , Austrália/epidemiologia , Dor Crônica/tratamento farmacológico , Maconha Medicinal/uso terapêutico , Seguimentos , Estudos Prospectivos , Fadiga/tratamento farmacológico
18.
Eur J Health Econ ; 2023 Sep 28.
Artigo em Inglês | MEDLINE | ID: mdl-37768519

RESUMO

OBJECTIVE: The EORTC QLU-C10D is a new preference-based measure derived from the EORTC QLQ-C30. Country-specific value sets are required to support the cost-utility analysis of cancer-related interventions. This study aimed to generate an EORTC QLU-C10 value set for Hong Kong (HK). METHODS: A HK online panel was quota-sampled to achieve an adult general population sample representative by sex and age. Participants were invited to complete an online discrete choice experiment survey. Each participant was asked to complete 16 choice-pairs, randomly assigned from a total of 960 choice-pairs, each comprising two QLU-C10D health states and a duration attribute. Conditional and mixed logistic regression analyses were used to analyse the data. RESULTS: The analysis included data from 1041 respondents who had successfully completed the online survey. The distribution of sex did not differ from that of the general population, but a significant difference was found among age groups. A weighting analysis for non-representative variable (age) was used. Utility decrements were generally monotonic, with the largest decrements for physical functioning (- 0.308), role functioning (- 0.165), and pain (- 0.161). The mean QLU-C10D utility score of the participants was 0.804 (median = 0.838, worst to best = - 0.169 to 1). The value of the worst health state was - 0.223, which was sufficiently lower than 0 (being dead). CONCLUSIONS: This study established HK utility weights for the QLU-C10D, which can facilitate cost-utility analyses across cancer-related health programmes and technologies.

19.
J Med Internet Res ; 25: e45016, 2023 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-37590037

RESUMO

BACKGROUND: The COVID-19 pandemic triggered a rapid scale-up of telehealth services in Australia as a means to provide continued care through periods of physical restrictions. The factors that influence engagement in telehealth remain unclear. OBJECTIVE: The purpose of this study is to understand the experience of Australian people who engaged in a telehealth consultation during the pandemic period (2020-2021) and the demographic factors that influence engagement. METHODS: A web-based survey was distributed to Australians aged over 18 years that included 4 questions on frequency and type of clinical consultation, including with a general practitioner (GP), specialist, allied health, or nurse; 1 question on the experience of telehealth; and 2 questions on the quality of and satisfaction with telehealth. Statistical analysis included proportion of responses (of positive responses where a Likert scale was used) and regression analyses to determine the effect of demographic variables. RESULTS: Of the 1820 participants who completed the survey, 88.3% (1607/1820) had engaged in a health care consultation of some type in the previous 12 months, and 69.3% (1114/1607) of those had used telehealth. The most common type of consultation was with a GP (959/1114, 86.1%). Older people were more likely to have had a health care consultation but less likely to have had a telehealth consultation. There was no difference in use of telehealth between metropolitan and nonmetropolitan regions; however, people with a bachelor's degree or above were more likely to have used telehealth and to report a positive experience. A total of 87% (977/1114) of participants agreed or strongly agreed that they had received the information they required from their consultation, 71% (797/1114) agreed or strongly agreed that the outcome of their consultation was the same as it would have been face-to-face, 84% (931/1114) agreed or strongly agreed that the doctor or health care provider made them feel comfortable, 83% (924/1114) agreed or strongly agreed that the doctor or health care provider was equally as knowledgeable as providers they have seen in person; 57% (629/1114) of respondents reported that they would not have been able to access their health consultation if it were not for telehealth; 69% (765/1114) of respondents reported that they were satisfied with their telehealth consultation, and 60% (671/1114) reported that they would choose to continue to use telehealth in the future. CONCLUSIONS: There was a relatively high level of engagement with telehealth over the 12 months leading up to the study period, and the majority of participants reported a positive experience and satisfaction with their telehealth consultation. While there was no indication that remoteness influenced telehealth usage, there remains work to be done to improve access to older people and those with less than a bachelor's degree.


Assuntos
COVID-19 , Clínicos Gerais , Telemedicina , Humanos , Adulto , Pessoa de Meia-Idade , Idoso , Satisfação do Paciente , Pandemias , Austrália , COVID-19/epidemiologia , Satisfação Pessoal , Internet
20.
BMJ Open ; 13(8): e073039, 2023 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-37532476

RESUMO

INTRODUCTION: There is evidence from previous studies that adults value paediatric health-related quality of life (HRQoL) and adult HRQoL differently. Less is known about how adolescents value paediatric HRQoL and whether their valuation and decision-making processes differ from those of adults. Discrete choice experiments (DCEs) are widely used to develop value sets for measures of HRQoL, but there is still much to understand about whether and how the methods choices in the implementation of DCE valuation tasks, such as format, presentation and perspective, affect the decision-making process of participants. This paper describes the protocol for a qualitative study that aims to explore the decision-making process of adults and adolescents when completing DCE valuation tasks. The study will also explore the impact of methodological choices in the design of DCE studies (including decisions about format and presentation) on participants' thinking process. METHODS AND ANALYSIS: An interview protocol has been developed using DCE valuation tasks. Interviews will be conducted online via Zoom with both an adolescent and adult sample. In the interview, the participant will be asked to go through some DCE valuation tasks while 'thinking aloud'. After completion of the survey, participants will then be asked some predetermined questions in relation to various aspects of the DCE tasks. Interviews will be recorded and transcribed and analysed using a thematic analysis approach. ETHICS AND DISSEMINATION: Ethics approval for this study has been received for the adult sample (UTS ETH20-9632) as well as the youth sample (UTS ETH22-6970) from the University of Technology Sydney Human Research Ethics Committee. Results from this study will inform the methods to be used in development of value sets for use in the health technology assessment of paediatric interventions and treatments. Findings from this study will also be disseminated through national/international conferences and peer-reviewed journals.


Assuntos
Comportamento de Escolha , Qualidade de Vida , Adulto , Adolescente , Humanos , Criança , Pesquisa Qualitativa , Inquéritos e Questionários , Projetos de Pesquisa
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