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1.
J Neurol Neurosurg Psychiatry ; 95(5): 401-409, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-37918903

RESUMO

BACKGROUND: Increasing evidence suggests the potential of Epstein-Barr virus (EBV) vaccination in preventing multiple sclerosis (MS). We aimed to explore the cost-effectiveness of a hypothetical EBV vaccination to prevent MS in an Australian setting. METHODS: A five-state Markov model was developed to simulate the incidence and subsequent progression of MS in a general Australian population. The model inputs were derived from published Australian sources. Hypothetical vaccination costs, efficacy and strategies were derived from literature. Total lifetime costs, quality-adjusted life years (QALYs) and incremental cost-effectiveness ratios (ICERs) were estimated for two hypothetical prevention strategies versus no prevention from the societal and health system payer perspectives. Costs and QALYs were discounted at 5% annually. One-way, two-way and probabilistic sensitivity analyses were performed. RESULTS: From societal perspective, EBV vaccination targeted at aged 0 and aged 12 both dominated no prevention (ie, cost saving and increasing QALYs). However, vaccinating at age 12 was more cost-effective (total lifetime costs reduced by $A452/person, QALYs gained=0.007, ICER=-$A64 571/QALY gained) than vaccinating at age 0 (total lifetime costs reduced by $A40/person, QALYs gained=0.003, ICER=-$A13 333/QALY gained). The probabilities of being cost-effective under $A50 000/QALY gained threshold for vaccinating at ages 0 and 12 were 66% and 90%, respectively. From health system payer perspective, the EBV vaccination was cost-effective at age 12 only. Sensitivity analyses demonstrated the cost-effectiveness of EBV vaccination to prevent MS under a wide range of plausible scenarios. CONCLUSIONS: MS prevention using future EBV vaccinations, particularly targeted at adolescence population, is highly likely to be cost-effective.


Assuntos
Infecções por Vírus Epstein-Barr , Esclerose Múltipla , Adolescente , Humanos , Criança , Recém-Nascido , Análise Custo-Benefício , Herpesvirus Humano 4 , Infecções por Vírus Epstein-Barr/prevenção & controle , Esclerose Múltipla/prevenção & controle , Austrália , Vacinação , Anos de Vida Ajustados por Qualidade de Vida
2.
Mult Scler ; 30(1): 80-88, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38116594

RESUMO

BACKGROUND: The MS disease-modifying therapies (DMTs) prescribing landscape in Australia have changed over time. OBJECTIVES: This study evaluated the utilisation and cost trends of MS-related DMTs in Australia over 10 years and investigated differences between States/Territories. METHODS: The prescription and costs of 16 DMTs were extracted from the Pharmaceutical Benefits Scheme for 2013-2022. Descriptive approaches analysed the total number of people prescribed DMTs and total DMT costs per 10,000 population, proportions of prescriptions/costs by DMT groups and the number of people prescribed each individual DMT and costs of each DMT over the 10-year period. All estimates were for Australia and each State/Territory individually. RESULTS: The number of people prescribed DMT and costs per 10,000 population had substantial growth between 2013 and 2022: 125%/164% for Australia, and 94%-251%/129%-373% for individual States/Territories. Higher efficacy group accounted for 54% of total people prescribed DMTs in 2013 and 75% in 2022. Fingolimod was the most popular DMT until 2020, then was dominated by ocrelizumab. The trends of individual DMT prescriptions and costs differed between states particularly in Western Australia (WA), Tasmania and Northern Territory (NT). CONCLUSION: DMT prescriptions and costs continuously increased over the last decade, particularly for higher efficacy DMTs, and their trends differed between States/Territories.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/epidemiologia , Cloridrato de Fingolimode , Austrália
3.
Psychooncology ; 33(1): e6245, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37983678

RESUMO

OBJECTIVE: Multiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia. METHODS: Exploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face-to-face in 2022. Thematic analysis was used. RESULTS: Ten groups were held with 48 participants (n = 23 with MM, n = 9 with MDS, n = 16 carers). Key themes arising from focus groups with people living with MM/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome. CONCLUSION: Future work should consider what supports are required for patients acting as carers, and carer burden should not be assumed.


Assuntos
Mieloma Múltiplo , Síndromes Mielodisplásicas , Humanos , Cuidadores , Mieloma Múltiplo/terapia , Austrália , Síndromes Mielodisplásicas/terapia
4.
Qual Life Res ; 33(6): 1675-1689, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38578380

RESUMO

PURPOSE: People living with multiple sclerosis (PwMS) in metropolitan Victoria, Australia, experienced a 112-day, COVID-19-related lockdown in mid-2020. Contemporaneously, Australian PwMS elsewhere experienced minimal restrictions, resulting in a natural experiment. This study investigated the relationships between lockdowns, COVID-19-related adversity, and health-related quality of life (HRQoL). It also generated health state utilities (HSU) representative of changes in HRQoL. METHODS: Data were extracted from Australian MS Longitudinal Study surveys, which included the Assessment of Quality of Life-Eight Dimensions (AQoL-8D) instrument and a COVID-19 questionnaire. This COVID-19 questionnaire required participants to rank their COVID-19-related adversity across seven health dimensions. Ordered probits were used to identify variables contributing to adversity. Linear and logit regressions were applied to determine the impact of adversity on HRQoL, defined using AQoL-8D HSUs. Qualitative data were examined thematically. RESULTS: N = 1666 PwMS (average age 58.5; 79.8% female; consistent with the clinical presentation of MS) entered the study, with n = 367 (22.0%) exposed to the 112-day lockdown. Lockdown exposure and disability severity were strongly associated with higher adversity rankings (p < 0.01). Higher adversity rankings were associated with lower HSUs. Participants reporting major adversity, across measured health dimensions, had a mean HSU 0.161 (p < 0.01) lower than participants reporting no adversity and were more likely (OR: 2.716, p < 0.01) to report a clinically significant HSU reduction. Themes in qualitative data supported quantitative findings. CONCLUSIONS: We found that COVID-19-related adversity reduced the HRQoL of PwMS. Our HSU estimates can be used in health economic models to evaluate lockdown cost-effectiveness for people with complex and chronic (mainly neurological) diseases.


Assuntos
COVID-19 , Esclerose Múltipla , Qualidade de Vida , SARS-CoV-2 , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Esclerose Múltipla/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Longitudinais , Inquéritos e Questionários , Idoso , Austrália , Vitória , Adulto , Pandemias , Quarentena/psicologia
5.
Qual Life Res ; 33(1): 45-57, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37561337

RESUMO

PURPOSE: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition with a constellation of symptoms presenting as severe and profound fatigue of ≥ 6 months not relieved by rest. ME/CFS affects health-related quality of life (HRQoL), which can be measured using multi-attribute health state utility (HSU) instruments. The aims of this study were to quantify HSUs for people living with ME/CFS, and to identify an instrument that is preferentially sensitive for ME/CFS. METHODS: Cross-sectional national survey of people with ME/CFS using the AQoL-8D and EQ-5D-5L. Additional questions from the AQoL-8D were used as 'bolt-ons' to the EQ-5D-5L (i.e., EQ-5D-5L-Psychosocial). Disability and fatigue severity were assessed using the De Paul Symptom Questionnaire-Short Form (DSQ-SF). HSUs were generated using Australian tariffs. Mean HSUs were stratified for sociodemographic and clinical factors. Bland-Altman plots were used to compare the three HSU instruments. RESULTS: For the 198 participants, mean HSUs (95% confidence intervals) were EQ-5D-5L: 0.46 (0.42-0.50); AQoL-8D: 0.43 (0.41-0.45); EQ-5D-5L-Psychosocial: 0.44 (0.42-0.46). HSUs were substantially lower than population norms: EQ-5D-5L: 0.89; AQoL-8D: 0.77. As disability and fatigue severity increased, HSUs decreased in all three instruments. Bland-Altman plots revealed interchangeability between the AQoL-8D and EQ-5D-5LPsychosocial. Floor and ceiling effects of 13.5% and 2.5% respectively were observed for the EQ-5D-5L instrument only. CONCLUSIONS: ME/CFS has a profound impact on HRQoL. The AQoL-8D and EQ-5D-5L-Psychosocial can be used interchangeably: the latter represents a reduced participant burden.


Assuntos
Síndrome de Fadiga Crônica , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Estudos Transversais , Austrália , Inquéritos e Questionários
6.
Laterality ; 29(2): 199-219, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38415984

RESUMO

Role-differentiated bimanual manipulation (RDBM) is a complex behaviour requiring the complementary movement of two hands to achieve a common goal. We investigated the relation of RDBM speed (time to complete a successful RDBM) with a hand preference for acquiring objects (early right, late right, left, no preference), toy type (simple/difficult), age (9-14 months), and hand (right/left) used to perform the RDBM. Changes in RDBM speed across age were examined across different hand preference groups for RDBMs performed on simple toys using the right hand. The analysis revealed that early-right preference infants had a steeper slope than the no preference/left-preference infants. The same was true for right-preference infants (early- and late-) for RDBMs performed on difficult toys using the right hand. A mixed ANOVA revealed that there were decreases in RDBM times across age, therefore infants are faster at performing RDBMs over time, regardless of toy type, hand used, or hand preference. The results of the present study suggest that when exploring the development of hand preference, we should consider the influence of age, hand preference, and hand used.


Assuntos
Desenvolvimento Infantil , Destreza Motora , Lactente , Humanos , Lateralidade Funcional , Mãos , Movimento , Desempenho Psicomotor
7.
Health Promot J Austr ; 35(1): 100-109, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36894322

RESUMO

ISSUE ADDRESSED: Evaluated the impact of the Understanding Multiple Sclerosis (MS) massive open online course, which was intended to increase understanding and awareness about MS, on self-reported health behaviour change 6 months after course completion. METHODS: Observational cohort study evaluating precourse(baseline) and postcourse (immediately postcourse and six-month follow-up) survey data. The main study outcomes were self-reported health behaviour change; change type; and measurable improvement. We also collected participant characteristic data (eg, age, physical activity). We compared participants who reported health behaviour change at follow-up to those who did not and compared those who improved to those who did not using χ2 and t tests. Participant characteristics, change types and change improvement were described descriptively. Consistency between changes reported immediately postcourse and at the 6-month follow-up was assessed using χ2 tests and textual analysis. RESULTS: N = 303 course completers were included in this study. The study cohort included MS community members (eg, people with MS, healthcare providers) and nonmembers. N = 127 (41.9%) reported behaviour change in ≥1 area at follow-up. Of these, 90 (70.9%) reported a measured change, and of these, 57 (63.3%) showed improvement. The most reported change types were knowledge, exercise/physical activity and diet. N = 81 (63.8% of those reporting a change) reported a change in both immediately and 6 months after course completion, with 72.0% of those that described both changes giving similar responses each time. CONCLUSION: Understanding MS encourages health behaviour change among course completers up to 6 months after course completion. SO WHAT?: An online education intervention can effectively encourage health behaviour change over a 6-month follow-up period, suggesting a transition from acute change to maintenance. The primary mechanisms underpinning this effect are information provision, including both scientific evidence and lived experience, and goal-setting activities and discussions.


Assuntos
Esclerose Múltipla , Humanos , Autorrelato , Exercício Físico , Comportamentos Relacionados com a Saúde , Inquéritos e Questionários
8.
J Neurol Neurosurg Psychiatry ; 94(12): 975-983, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37884346

RESUMO

BACKGROUND: No large-scale qualitative studies have investigated the lived experience of people living with multiple sclerosis (PwMS) during the pandemic according to their disability level. We used qualitative research methods to investigate the lived experience of a large cohort of Australians living with differing multiple sclerosis (MS)-related disability levels during the COVID-19 pandemic. We also provided useful contextualisation to existing quantitative work. METHODS: This was a retrospective survey-based mixed-methods cohort study. A quality-of-life study was conducted within the Australian MS Longitudinal Study during the pandemic. Disability severity was calculated using the Patient Determined Disease Steps. Qualitative free-text data regarding COVID-19 impacts was collected/analysed for word frequency and also thematically (inductively/deductively using sophisticated grounded theory) using NVivo software. We also triangulated word frequency with emerging themes. RESULTS: N=509 PwMS participated providing n=22 530 words of COVID-19-specific data. Disability severity could be calculated for n=501 PwMS. The word 'working' was important for PwMS with no disability, and 'support' and 'isolation' for higher disability levels. For PwMS with milder disability, thematic analysis established that multitasking increased stress levels, particularly if working from home (WFH) and home-schooling children. If not multitasking, WFH was beneficial for managing fatigue. PwMS with severe disability raised increased social isolation as a concern including prepandemic isolation. CONCLUSIONS: We found negative impacts of multitasking and social isolation for PwMS during the pandemic. WFH was identified as beneficial for some. We recommend targeted resourcing decisions for PwMS in future pandemics including child-care relief and interventions to reduce social isolation and suggest that these could be incorporated into some form of advanced care planning. As the nature of work changes postpandemic, we also recommend a detailed investigation of WFH for PwMS including providing tailored employment assistance.


Assuntos
População Australasiana , COVID-19 , Esclerose Múltipla , Humanos , Austrália/epidemiologia , Estudos de Coortes , Estudos Longitudinais , Esclerose Múltipla/epidemiologia , Pandemias , Estudos Retrospectivos
9.
Qual Life Res ; 32(12): 3349-3358, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37668925

RESUMO

PURPOSE: Most studies regarding the association of obesity with health-related quality of life (HRQoL) have assessed obesity at only one or two time points. We aimed to examine the associations of life course body mass index (BMI) from childhood with health-related quality of life (HRQoL) in mid-adulthood. METHODS: Data were from a cohort study of Australian children (n = 2254, mean baseline age 12.0 (2.0) years in 1985, 46.8% male). Weight and height were measured at baseline and measured or self-reported on average 20, 25, and 30 years later. Age and sex-standardised BMI-z score was calculated at each time point. Physical and mental HRQoL and health state utilities (HSUs) were measured by SF-12 and SF-6D at the last adult follow-up. Linear regression was used to examine the associations adjusting for age, sex, and childhood health status. RESULTS: Higher BMI-z score in childhood (ßadjusted - 1.39, 95% CI - 1.73 to - 1.05) and increasing BMI-z score from childhood to young adulthood (ßadjusted - 1.82, 95% CI - 2.17 to - 1.46) and from young to mid-adulthood (ßadjusted - 1.77, 95% CI - 2.28 to - 1.26) were associated with lower physical HRQoL in mid-adulthood. Similar results were found for mid-adulthood HSUs (ßadjusted ranged - 0.006 to - 0.014, all P < 0.05). Only increasing BMI-z score from young to mid-adulthood significantly related to poorer mental HRQoL (ßadjusted - 0.74, 95% CI - 1.29 to - 0.19) in mid-adulthood. CONCLUSION: High BMI from childhood to mid-adulthood had only modest associations with HRQoL and HSUs, with effects on physical HRQoL most apparent.


Assuntos
Obesidade , Qualidade de Vida , Adulto , Criança , Masculino , Humanos , Adulto Jovem , Feminino , Índice de Massa Corporal , Qualidade de Vida/psicologia , Estudos de Coortes , Austrália , Obesidade/complicações
10.
Qual Life Res ; 32(7): 1883-1896, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36821020

RESUMO

BACKGROUND/PURPOSE: Health state utilities (HSU) are a subjective measure of an individual's health-related quality of life (HRQoL), adjusted by societal or patient relative preference weights for living in different states of health-related quality of life (HRQoL), derived from patient-reported responses to multi-attribute utility instrument (MAUI), and can be used as inputs for cost-utility analyses and in clinical assessment. This research assessed associations of diet with subsequent HSU in a large international cohort of people living with multiple sclerosis (MS), a progressive autoimmune condition of the central nervous system. METHODS: HSUs were generated from responses to Short-Form Six-Dimension (SF-6D) MAUI, and quality-of-the-diet by Diet Habits Questionnaire (DHQ). Cross-sectional, and short- and long-term prospective associations of DHQ with HSU evaluated by linear regression at 2.5- and 5-years. Pooled prospective associations between DHQ and HSU evaluated using linear and quantile regression. Analyses adjusted for relevant demographic and clinical covariates. RESULTS: Among 839 participants, baseline DHQ scores showed short- and long-term associations with subsequent HSU, each 10-unit increase in total DHQ score associated with 0.008-0.012 higher HSU (out of 1.00). These associations were dose-dependent, those in the top two quartiles of baseline DHQ scores having 0.01-0.03 higher HSU at follow-up, 0.03 being the threshold for a minimally clinically important difference. Fat, fiber, and fruit/vegetable DHQ subscores were most strongly and consistently associated with better HSU outcomes. However, baseline meat and dairy consumption were associated with 0.01-0.02 lower HSU at subsequent follow-up. CONCLUSIONS: A higher quality-of-the-diet showed robust prospective relationships with higher HSUs 2.5- and 5-years later, substantiating previous cross-sectional relationships in this cohort. Subject to replication, these results suggest interventions to improve the quality-of-the-diet may be effective to improve HRQoL in people living with MS.


Assuntos
Esclerose Múltipla , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Estudos de Coortes , Dieta , Inquéritos e Questionários
11.
Qual Life Res ; 32(12): 3373-3387, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37522942

RESUMO

BACKGROUND AND AIMS: Relapses are an important clinical feature of multiple sclerosis (MS) that result in temporary negative changes in quality of life (QoL), measured by health state utilities (HSUs) (disutilities). We aimed to quantify disutilities of relapse in relapsing remitting MS (RRMS), secondary progressive MS (SPMS), and relapse onset MS [ROMS (including both RRMS and SPMS)] and examine these values by disability severity using four multi-attribute utility instruments (MAUIs). METHODS: We estimated (crude and adjusted and stratified by disability severity) disutilities (representing the mean difference in HSUs of 'relapse' and 'no relapse' groups as well as 'unsure' and 'no relapse' groups) in RRMS (n = 1056), SPMS (n = 239), and ROMS (n = 1295) cohorts from the Australian MS Longitudinal Study's 2020 QoL survey, using the EQ-5D-5L, AQoL-8D, EQ-5D-5L-Psychosocial, and SF-6D MAUIs. RESULTS: Adjusted mean overall disutilities of relapse in RMSS/SPMS/ROMS were - 0.101/- 0.149/- 0.129 (EQ-5D-5L), - 0.092/- 0.167/- 0.113 (AQoL-8D), - 0.080/- 0.139/- 0.097 (EQ-5D-5L-Psychosocial), and - 0.116/- 0.161/- 0.130 (SF-6D), approximately 1.5 times higher in SPMS than in RRMS, in all MAUI. All estimates were statistically significant and/or clinically meaningful. Adjusted disutilities of RRMS and ROMS demonstrated a U-shaped relationship between relapse disutilities and disability severity. Relapse disutilities were higher in 'severe' disability than 'mild' and 'moderate' in the SPMS cohort. CONCLUSION: MS-related relapses are associated with substantial utility decrements. As the type and severity of MS influence disutility of relapse, the use of disability severity and MS-type-specific disutility inputs is recommended in future health economic evaluations of MS. Our study supports relapse management and prevention as major mechanisms to improve QoL in people with MS.


Assuntos
Esclerose Múltipla Crônica Progressiva , Esclerose Múltipla , Humanos , Qualidade de Vida/psicologia , Análise Custo-Benefício , Estudos Longitudinais , Inquéritos e Questionários , Austrália , Doença Crônica , Recidiva
12.
Qual Life Res ; 32(6): 1609-1619, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-36572788

RESUMO

PURPOSE: Little is known about the impact of co-morbidities on health-related quality of life (HRQoL) for people with idiopathic pulmonary fibrosis (IPF). We aimed to investigate the relative contribution of co-morbidities to HRQoL of people with IPF. METHODS: N = 157 participants were recruited from the Australian IPF Registry (AIPFR). Health state utilities (HSUs), and the super-dimensions of physical and psychosocial scores were measured using the Assessment of Quality of Life-8-Dimensions (AQoL-8D). The impact of co-morbidities on HRQoL was investigated using linear regression and general dominance analyses. RESULTS: A higher number of co-morbidities was associated with lower HSUs (p trend = 0.002). Co-morbidities explained 9.1% of the variance of HSUs, 16.0% of physical super-dimensional scores, and 4.2% of psychosocial super-dimensional scores. Arthritis was associated with a significant reduction on HSUs (ß = - 0.09, 95% confidence interval [CI] - 0.16 to - 0.02), largely driven by reduced scores on the physical super-dimension (ß = - 0.13, 95% CI - 0.20 to - 0.06). Heart diseases were associated with a significant reduction on HSUs (ß = - 0.09, 95% CI - 0.16 to - 0.02), driven by reduced scores on physical (ß = - 0.09, 95% CI - 0.16 to - 0.02) and psychosocial (ß = -0.10, 95% CI - 0.17 to - 0.02) super-dimensions. CONCLUSIONS: Co-morbidities significantly impact HRQoL of people with IPF, with markedly negative impacts on their HSUs and physical health. A more holistic approach to the care of people with IPF is important as better management of these co-morbidities could lead to improved HRQoL in people with IPF.


Assuntos
Fibrose Pulmonar Idiopática , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Inquéritos e Questionários , Austrália , Morbidade
13.
Qual Life Res ; 32(2): 553-568, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36036311

RESUMO

BACKGROUND: Multiple sclerosis (MS) is an inflammatory, neurodegenerative disease of the central nervous system which results in disability over time and reduced quality of life. To increase the sensitivity of the EQ-5D-5L for psychosocial health, four bolt-on items from the AQoL-8D were used to create the nine-item EQ-5D-5L-Psychosocial. We aimed to externally validate the EQ-5D-5L-Psychosocial in a large cohort of people with MS (pwMS) and explore the discriminatory power of the new instrument with EQ-5D-5L/AQoL-8D. METHODS: A large representative sample from the Australian MS Longitudinal Study completed the AQoL-8D and EQ-5D-5L (including EQ VAS) and both instruments health state utilities (HSUs) were scored using Australian tariffs. Sociodemographic/clinical data were also collected. External validity of EQ-5D-5L-Psychosocial scoring algorithm was assessed with mean absolute errors (MAE) and Spearman's correlation coefficient. Discriminatory sensitivity was assessed with an examination of ceiling/floor effects, and disability severity classifications. RESULTS: Among 1683 participants (mean age: 58.6 years; 80% female), over half (55%) had moderate or severe disability. MAE (0.063) and the distribution of the prediction error were similar to the original development study. Mean (± standard deviation) HSUs were EQ-5D-5L: 0.58 ± 0.32, EQ-5D-5L-Psychosocial 0.62 ± 0.29, and AQoL-8D: 0.63 ± 0.20. N = 157 (10%) scored perfect health (i.e. HSU = 1.0) on the EQ-5D-5L, but reported a mean HSU of 0.90 on the alternative instruments. The Sleep bolt-on dimension was particularly important for pwMS. CONCLUSIONS: The EQ-5D-5L-Psychosocial is more sensitive than the EQ-5D-5L in pwMS whose HSUs approach those reflecting full health. When respondent burden is taken into account, the EQ-5D-5L-Psychosocial is preferential to the AQoL-8D. We suggest a larger confirmatory study comparing all prevalent multi-attribute utility instruments for pwMS.


Assuntos
Esclerose Múltipla , Doenças Neurodegenerativas , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Qualidade de Vida/psicologia , Inquéritos e Questionários , Estudos Longitudinais , Austrália , Psicometria/métodos
14.
Qual Life Res ; 32(2): 473-493, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35927542

RESUMO

PURPOSE: Idiopathic pulmonary fibrosis (IPF) is a progressive and debilitating chronic lung disease with a high symptom burden, which has a substantial impact on health-related quality of life (HRQoL). Our study aimed to assess the suitability of the EuroQol five-dimension (EQ-5D-5L) and the Assessment of Quality of Life- eight-dimension (AQoL-8D) questionnaires in measuring HRQoL as health state utility values (HSUVs) in an Australian IPF cohort. METHODS: Data for estimation of health state utility values (HSUVs) were collected from participants of the Australian IPF Registry (AIPFR) using self-administered surveys which included the EQ-5D-5L and the AQoL-8D. Data on lung function and disease specific HRQoL instruments were collected from the AIPFR. Performance of the two instruments was evaluated based on questionnaire practicality, agreement between the two instruments and test performance (internal and construct validity). RESULTS: Overall completion rates for the EQ-5D-5L and AQoL-8D were 96% and 85%, respectively. Mean (median) HSUVs were 0.65 (0.70) and 0.69 (0.72) for the EQ-5D-5L and AQoL-8D, respectively. There was reasonable agreement between the two instruments based on the Bland-Altman plot mean difference (-0.04) and intraclass correlation coefficient (0.84), however there were some fundamental differences. A larger range of values was observed with the EQ-5D-5L (-0.57-1.00 vs 0.16-1.00). The EQ-5D-5L had a greater divergent sensitivity and efficacy in relation to assessing HSUVs between clinical groupings. The AQoL-8D ,however, had a higher sensitivity to measure psychosocial aspects of HRQoL in IPF. CONCLUSION: The EQ-5D-5L demonstrated superior performance when compared to AQoL-8D in persons with IPF. This may be attributable to the high symptom burden which is physically debilitating to which the EQ-5D-5L may be more sensitive.


Assuntos
Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Austrália , Inquéritos e Questionários , Psicometria/métodos
15.
Respirology ; 28(10): 916-924, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37433646

RESUMO

BACKGROUND AND OBJECTIVE: Little is known about the association between ambient air pollution and idiopathic pulmonary fibrosis (IPF) in areas with lower levels of exposure. We aimed to investigate the impact of air pollution on lung function and rapid progression of IPF in Australia. METHODS: Participants were recruited from the Australian IPF Registry (n = 570). The impact of air pollution on changes in lung function was assessed using linear mixed models and Cox regression was used to investigate the association with rapid progression. RESULTS: Median (25th-75th percentiles) annual fine particulate matter (<2.5 µm, PM2.5 ) and nitrogen dioxide (NO2 ) were 6.8 (5.7, 7.9) µg/m3 and 6.7 (4.9, 8.2) ppb, respectively. Compared to living more than 100 m from a major road, living within 100 m was associated with a 1.3% predicted/year (95% confidence interval [CI] -2.4 to -0.3) faster annual decline in diffusing capacity of the lungs for carbon monoxide (DLco). Each interquartile range (IQR) of 2.2 µg/m3 increase in PM2.5 was associated with a 0.9% predicted/year (95% CI -1.6 to -0.3) faster annual decline in DLco, while there was no association observed with NO2 . There was also no association between air pollution and rapid progression of IPF. CONCLUSION: Living near a major road and increased PM2.5 were both associated with an increased rate of annual decline in DLco. This study adds to the evidence supporting the negative effects of air pollution on lung function decline in people with IPF living at low-level concentrations of exposure.


Assuntos
Poluentes Atmosféricos , Poluição do Ar , Fibrose Pulmonar Idiopática , Humanos , Poluentes Atmosféricos/efeitos adversos , Poluentes Atmosféricos/análise , Dióxido de Nitrogênio/efeitos adversos , Dióxido de Nitrogênio/análise , Exposição Ambiental/efeitos adversos , Austrália/epidemiologia , Poluição do Ar/efeitos adversos , Poluição do Ar/análise , Material Particulado/efeitos adversos , Material Particulado/análise , Pulmão , Fibrose Pulmonar Idiopática/epidemiologia
16.
Dev Psychobiol ; 65(5): e22397, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37338251

RESUMO

Stacking is a hallmark of fine motor skill development and requires skilled hand use. One mechanism for children to gain manual proficiency involves establishing a hand preference that creates practice differences between the hands as the preferred hand is used more often and in different ways than the other. Prior work found that stacking skill emerged earlier for infants with an identifiable hand preference. However, it is not known how hand preference relates to later toddler stacking performance. This study examined the effects of early hand preference (infant pattern), concurrent hand preference (toddler pattern), and consistent hand preference (infant to toddler pattern) on toddler stacking skills. Sixty-one toddlers, whose hand preferences as infants were known, were assessed for their toddler hand preference and their stacking skill across 7 monthly visits from 18 to 24 months of age. Using multilevel Poisson longitudinal analysis, children with hand preferences that were consistent across both infancy and toddlerhood were more successful at stacking, compared to those with inconsistent preferences across the infant and toddler periods. Thus, consistency of hand preferences during the first 2 years likely contributes toward individual differences in the development of fine motor skills.


Assuntos
Desenvolvimento Infantil , Destreza Motora , Lactente , Humanos , Lateralidade Funcional , Desempenho Psicomotor , Mãos
17.
Am J Perinatol ; 2023 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-37348545

RESUMO

OBJECTIVE: The objective of this program evaluation was to describe the outcomes of daily neonatologist telerounding with the onsite advanced practice provider (APP) in a Level II neonatal intensive care unit (NICU), before and during the coronavirus disease 2019 (COVID-19) pandemic. STUDY DESIGN: Bedside telerounding occurred with an onsite APP using a telehealth cart and paired Bluetooth stethoscope. Data collected by longitudinal and cross-sectional surveys and chart review before (May 2019-February 2020) and during (March 2020-February 2021) the COVID-19 pandemic were analyzed using descriptive statistics and thematic analysis. RESULTS: A total of 258 patients were admitted to the Level II NICU before (May 2019-February 2020) and during (March 2020-February 2021) the COVID-19 pandemic. Demographic characteristics and outcomes, including breastfeeding at discharge and length of stay were similar pre- and postonset of the COVID-19 pandemic. Postrounding surveys by 10 (response rate 83%) neonatologists indicated parents were present in 80 (77%) of rounds and video was at least somewhat helpful in 94% of cases. Cross-sectional survey responses of 23 neonatologists and APPs (response rate 62%) indicated satisfaction with the program. Common themes on qualitative analysis of open-ended survey responses were "need for goodness of fit" and "another set of eyes" and "opportunities for use." CONCLUSION: Daily telerounding with neonatologists and APPs in a Level II NICU supported neonatal care. Quality metrics and clinical outcomes are described with no differences seen before and during the COVID-19 pandemic. KEY POINTS: · Little is known about Level II NICU quality metrics and outcomes.. · Daily bedside telerounding with neonatologists and APPs is described.. · Telerounding supported neonatal care before and during the COVID-19 pandemic.. · Neonatologists found visual exam helpful in the majority of cases.. · No differences in NICU clinical outcomes were seen during the COVID-19 pandemic..

18.
Telemed J E Health ; 29(4): 560-568, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36036799

RESUMO

Objectives: To assess the viability of a hybrid clinic model combining in-person examination with video-based consultation to minimize viral transmission risk. Methods: Data were collected prospectively in a pediatric urology clinic for in-person visits from January to April 2018 ("classic") and hybrid visits from October to December 2020 of the COVID-19 pandemic ("hybrid"). Variables included provider, diagnosis, patient type, time of day, prior surgery, postoperative status, and decision-making for surgery. The primary outcome was "room time" or time in-person. The secondary outcome was "total time" or visit duration. Proportion of visits involving close contact (room time ≥15 min) was assessed. Univariate analyses were performed using the Wilcoxon rank-sum test and Fisher's exact test. Mixed models were fitted for visit approach and other covariates as fixed effects and provider as random effect. Results: Data were collected for 346 visits (256 classic, 90 hybrid). Hybrid visits were associated with less room time (median 3 min vs. 10 min, p < 0.001) but greater total time (median 13.5 min vs. 10 min, p = 0.001) as compared with classic visits. On multivariate analysis, hybrid visits were associated with 3 min less room time (95% confidence intervals [CIs]: -5.3 to -1.7, p < 0.001) but 3.8 min more total time (95% CI: 1.5-6.1, p = 0.001). Close contact occurred in 6.7% of hybrid visits, as compared with 34.8% of classic visits (p < 0.001). Conclusions: Hybrid clinic visits reduce room time as compared with classic visits. This approach overcomes the examination limitations of telemedicine while minimizing viral transmission, and represents a viable model for ambulatory care whenever close contact carries infection risk.


Assuntos
COVID-19 , Telemedicina , Criança , Humanos , COVID-19/epidemiologia , Pandemias , Assistência Ambulatorial , Instituições de Assistência Ambulatorial
19.
Telemed J E Health ; 29(10): 1476-1483, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-36862536

RESUMO

Objectives: Rapid Access Chest Pain Clinics (RACPCs) provide safe and efficient follow-up for outpatients presenting with new-onset chest pain. RACPC delivery by telehealth has not been reported. We sought to evaluate a telehealth RACPC established during the coronavirus disease 2019 (COVID-19) pandemic. There was a need to reduce the frequency of additional testing arranged by the RACPC during this time, and the safety of this approach was also explored. Methods: This was a prospective evaluation of a cohort of RACPC patients reviewed by telehealth during the COVID-19 pandemic compared with a historical control group of face-to-face consultations. The main outcomes included emergency department re-presentation at 30 days and 12 months, major adverse cardiovascular events at 12 months, and patient satisfaction scores. Results: One hundred forty patients seen in the telehealth clinic were compared with 1,479 in-person RACPC controls. Baseline demographics were similar; however, telehealth patients were less likely to have a normal prereferral electrocardiogram than RACPC controls (81.4% vs. 88.1%, p = 0.03). Additional testing was ordered less often for telehealth patients (35.0% vs. 80.7%, p < 0.001). Rates of adverse cardiovascular events were low in both groups. One hundred twenty (85.7%) patients reported being satisfied or highly satisfied with the telehealth clinic service. Conclusions: In the setting of COVID-19, a telehealth RACPC model with reduced use of additional testing facilitated social distancing and achieved clinical outcomes equivalent to a face-to-face RACPC control. Telehealth may have an ongoing role beyond the pandemic, supporting specialist chest pain assessment for rural and remote communities. Pending further study, it may be safe to reduce the frequency of additional testing following RACPC review.


Assuntos
COVID-19 , Doenças Cardiovasculares , Telemedicina , Humanos , Clínicas de Dor , Pandemias , COVID-19/epidemiologia , Dor no Peito/diagnóstico , Dor no Peito/etiologia , Dor no Peito/epidemiologia
20.
Int J Environ Health Res ; 33(6): 575-587, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35230213

RESUMO

The time spent in sleep, sedentary behavior, and physical activity form a 24-hour movement behavior composition. The objective was to identify neighborhood physical environment features associated with multiple components of the movement behavior composition among 10 to 13-year-olds. Twenty-three neighborhood physical environment features were measured in 1 km buffers from the participants' homes and from these walkability, traffic safety, dedicated play spaces, non-dedicated play spaces, noise, and artificial light indices were created. Moderate-to-vigorous physical activity, light physical activity, sedentary time, and sleep duration were measured. Compositional data analysis was used to establish differences in movement behaviors according to neighborhood physical environment features. One hundred and sixteen associations, reflecting four movement behaviors X 29 environment variables and indices, were examined. Only three of these were statistically significant. Therefore, neighborhood physical environment features were not meaningful correlates of 24-hour movement behaviors.


Assuntos
Meio Ambiente , Exercício Físico , Humanos , Criança , Comportamento Sedentário , Sono , Duração do Sono , Características de Residência
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