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1.
J Med Internet Res ; 26: e59131, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39012686

RESUMO

BACKGROUND: Electronic mental health literacy (eMHL) is critical for accessing and effectively using digital mental health resources. However, there is a paucity of research on how eMHL varies across age groups. OBJECTIVE: This study aimed to investigate differences in eMHL among young, middle-aged, and older adults; provide insights into the needs, behaviors, and attitudes of different age groups in relation to digital mental health resources; and ultimately, inform the improvement of mental health services. METHODS: A qualitative investigation was conducted to examine the differences in eMHL across different age demographics in the Chinese population in 2023. The study sample comprised 3 distinct age groups: 18-34 years, 35-64 years, and 65 years and older. Participants were recruited through purposive sampling to ensure a diverse representation of the population. Data were collected through semistructured one-on-one interviews, which allowed for in-depth exploration of individual experiences and perceptions. The gathered data were subsequently subjected to rigorous thematic analysis to enable the identification and interpretation of recurring patterns and themes. RESULTS: The principal outcomes derived from these interviews were synthesized into 5 distinct dimensions: emotional needs, use of digital mental health resources, assessment of digital mental health information, engagement with social media to regulate emotions, and coping strategies. These dimensions were uniformly observed across the 3 age groups. CONCLUSIONS: We identified differences in knowledge, skills, and attitudes regarding the use of web-based information for managing mental health problems between the 3 age groups. The findings highlight the importance of age-specific strategies for improving eMHL.


Assuntos
Letramento em Saúde , Saúde Mental , Pesquisa Qualitativa , Humanos , Adulto , Pessoa de Meia-Idade , Feminino , Masculino , Idoso , Adolescente , Adulto Jovem , Fatores Etários , China
2.
Health Qual Life Outcomes ; 22(1): 50, 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38937825

RESUMO

OBJECTIVE: The objective of this study was to examine the psychometric properties of the EQ-5D-Y-3 L, Patient Reported Outcomes Measurement System 25-item version profile v2.0 (PROMIS-25), and Pediatric Quality of Life Inventory™ version 4.0 Generic Core Scale (PedsQL 4.0) in Chinese pediatric patients with spinal muscular atrophy (SMA). METHODS: The data used in this study were obtained via a web-based cross-sectional survey. Parents of pediatric patients with SMA completed the proxy-reported EQ-5D-Y-3 L, PedsQL 4.0, and PROMIS-25 measures. Information about socioeconomic and health status was also obtained. The ceiling and floor effects, factorial structure, convergent validity, and known-group validity of the three measures were assessed. RESULTS: Three hundred and sixty-three parents of children aged from 5 to 12 completed the questionnaires. Strong floor effects were observed for the physical function components of the PROMIS-25 (41.3%) and PedsQL 4.0 (67.8%). For EQ-5D-Y-3 L, 84.6% of the respondents reported having "a lot of" problems with the dimensions "walking" and "looking after myself." Minimal ceiling or floor effects were observed for the EQ-5D-Y-3 L index value. The confirmatory factor analysis supported a six-factor structure for the PROMIS-25, but did not support a four-factor structure for the PedsQL 4.0. All hypothesized correlations of the dimensions among the three measures were confirmed, with coefficients ranging from 0.28 to 0.68. Analysis of variance showed that EQ-5D-Y-3 L demonstrated better known-group validity than the other two measures in 14 out of 16 comparisons. CONCLUSIONS: The EQ-5D-Y-3 L showed better discriminant power than the other two measures. The physical health dimensions of all three measures showed the significant floor effects. These findings provide valuable insights into the effectiveness of these measures at capturing and quantifying the impact of SMA on patients' health-related quality of life.


Assuntos
Atrofia Muscular Espinal , Psicometria , Qualidade de Vida , Humanos , Masculino , Feminino , Criança , Qualidade de Vida/psicologia , Estudos Transversais , Inquéritos e Questionários/normas , Pré-Escolar , Atrofia Muscular Espinal/psicologia , Reprodutibilidade dos Testes , Medidas de Resultados Relatados pelo Paciente , China
3.
Healthcare (Basel) ; 12(12)2024 Jun 15.
Artigo em Inglês | MEDLINE | ID: mdl-38921318

RESUMO

The fifth wave of COVID-19, driven by the Omicron variant, started to surge in Hong Kong in December 2021. Previous studies have shown that younger adults, compared to older adults, are vulnerable to increased risks of side effects after vaccination. However, little is known about the COVID-19 vaccination behavior among younger adults, especially university students, in Hong Kong. Therefore, the present online survey study aimed to investigate the predictors of COVID-19 vaccination intention among university students in Hong Kong using the Health Belief Model (HBM) as a framework. Two other potential predictors, the previous influenza vaccine uptake frequency and the Hong Kong SAR government vaccination lottery program, were also examined. The intention to receive another dose of the COVID-19 vaccine was low (36.4%). Multivariate binomial logistic regression analysis showed that, after controlling for demographic and baseline characteristics, the perceived susceptibility (OR = 2.98, CI = 1.18-7.53) and previous influenza vaccine uptake frequency (OR = 1.54, CI = 1.08-2.19) significantly and positively predicted the COVID-19 vaccination intention. However, the government vaccination lottery program (i.e., wining prizes for being vaccinated) (OR = 0.87, CI = 0.34-2.26) was not a significant motivator of COVID-19 vaccination. Future public health campaigns should focus on the individual susceptibility to COVID-19 and past influenza vaccination history to promote increased vaccination uptake among university students.

4.
JMIR Public Health Surveill ; 10: e56054, 2024 May 21.
Artigo em Inglês | MEDLINE | ID: mdl-38771620

RESUMO

BACKGROUND: The COVID-19 pandemic has exerted a significant toll on individual health and the efficacy of health care systems. However, the influence of COVID-19 on the frequency and outcomes of out-of-hospital cardiac arrest (OHCA) within the Chinese population, both before and throughout the entire pandemic period, remains to be clarified. OBJECTIVE: This study aimed to fill the gaps by investigating the prevalence and outcomes of OHCA in Hong Kong (HK) both before and during the whole pandemic period. METHODS: This is a retrospective regional registry study. The researchers matched OHCA data with COVID-19-confirmed case records between December 2017 and May 2023. The data included information on response times, location of OHCA, witness presence, initial rhythm, bystander cardiopulmonary resuscitation (CPR), use of public-access defibrillation, resuscitation in the accident and emergency department, and survival to admission. Descriptive analyses were conducted, and statistical tests such as analysis of variance and χ2 were used to examine differences between variables. The incidence of OHCA and survival rates were calculated, and logistic regression analysis was performed to assess associations. The prevalence of OHCA and COVID-19 during the peak of the pandemic was also described. RESULTS: A total of 43,882 cases of OHCA were reported in HK and included in our analysis. Around 13,946 cases were recorded during the prepandemic period (2017-2019), and the remaining 29,936 cases were reported during the pandemic period (2020-2023). During the pandemic period, the proportion of female patients increased to 44.1% (13,215/29,936), and the average age increased slightly to 76.5 (SD 18.5) years. The majority of OHCAs (n=18,143, 61.1% cases) occurred at home. A witness was present in 45.9% (n=10,723) of the cases, and bystander CPR was initiated in 44.6% (n=13,318) of the cases. There was a significant increase in OHCA incidence, with a corresponding decrease in survival rates compared to the prepandemic period. The location of OHCA shifted, with a decrease in incidents in public places and a potential increase in incidents at home. We found that CPR (odds ratio 1.48, 95% CI 1.17-1.86) and public-access defibrillation (odds ratio 1.16, 95% CI 1.05-1.28) were significantly associated with a high survival to admission rate during the pandemic period. There was a correlation between the development of OHCA and the prevalence of COVID-19 in HK. CONCLUSIONS: The COVID-19 pandemic has had a significant impact on OHCA in HK, resulting in increased incidence and decreased survival rates. The findings highlight the importance of addressing the indirect effects of the pandemic, such as increased stress levels and strain on health care systems, on OHCA outcomes. Strategies should be developed to improve OHCA prevention, emergency response systems, and health care services during public health emergencies to mitigate the impact on population health.


Assuntos
COVID-19 , Parada Cardíaca Extra-Hospitalar , Sistema de Registros , Humanos , Parada Cardíaca Extra-Hospitalar/epidemiologia , Parada Cardíaca Extra-Hospitalar/terapia , Hong Kong/epidemiologia , COVID-19/epidemiologia , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Idoso , Idoso de 80 Anos ou mais , Adulto , Reanimação Cardiopulmonar/estatística & dados numéricos , Pandemias , Prevalência
5.
Digit Health ; 10: 20552076241243133, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38585191

RESUMO

Background: Given the rapid advancement in technology, the Internet has grown to play a significant role in the field of healthcare. Individuals can now access a profusion of easily available materials for self-management of their health. The purpose of this review is to describe Web/App-based interventions that are primarily or secondarily designed to improve mental health literacy (MHL) and to investigate the effectiveness of online interventions for improving mental health. Materials and Method: A scoping review was conducted by searching five databases: PsycINFO, EMBASE, PubMed, CINAHL, and Web of Science. The search was limited to peer-reviewed journals published in English between 2000 and 2022. Studies focusing on enhancements of MHL or its constituent components were included. Results: Twenty-four studies met the inclusion criteria. The interventions primarily targeted patients or individuals exhibiting symptoms of mental disorders, with a higher representation of female participants. All the interventions yielded positive outcomes. The included studies were categorized according to three themes: knowledge, attitude, and self-care skills. Although numerous studies have focused on knowledge improvement, research on interventions targeting self-care skills is scarce. Furthermore, existing literature on knowledge enhancement is limited in terms of the coverage of risk factors. Conclusion: This review indicates gaps in web/app interventions including limited evidence on risk factors, inconsistent help-seeking awareness, and inadequate self-care skills training. Further research is critically needed to address these deficiencies and promote comprehensive MHL.

6.
J Med Internet Res ; 26: e53417, 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38593427

RESUMO

BACKGROUND: The COVID-19 pandemic has led to a substantial increase in health information, which has, in turn, caused a significant rise in cyberchondria and anxiety among individuals who search for web-based medical information. To cope with this information overload and safeguard their mental well-being, individuals may adopt various strategies. However, the effectiveness of these strategies in mitigating the negative effects of information overload and promoting overall well-being remains uncertain. OBJECTIVE: This study aimed to investigate the moderating effect of coping strategies on the relationship between the infodemic-driven misuse of health care and depression and cyberchondria. The findings could add a new dimension to our understanding of the psychological impacts of the infodemic, especially in the context of a global health crisis, and the moderating effect of different coping strategies on the relationship between the overuse of health care and cyberchondria and anxiety. METHODS: The data used in this study were obtained from a cross-sectional web-based survey. A professional survey company was contracted to collect the data using its web-based panel. The survey was completed by Chinese individuals aged 18 years or older without cognitive problems. Model parameters of the relationships between infodemic-driven overuse of health care, cyberchondria, and anxiety were analyzed using bootstrapped partial least squares structural equation modeling. Additionally, the moderating effects of coping strategies on the aforementioned relationships were also examined. RESULTS: A total of 986 respondents completed the web-based survey. The mean scores of the Generalized Anxiety Disorder-7 and Cyberchondria Severity Scale-12 were 8.4 (SD 3.8) and 39.7 (SD 7.5), respectively. The mean score of problem-focused coping was higher than those of emotion- and avoidant-focused coping. There was a significantly positive relationship between a high level of infodemic and increased overuse of health care (bootstrapped mean 0.21, SD 0.03; 95% CI 0.1581-0.271). The overuse of health care resulted in more severe cyberchondria (bootstrapped mean 0.107, SD 0.032) and higher anxiety levels (bootstrapped mean 0.282, SD 0.032) in all the models. Emotion (bootstrapped mean 0.02, SD 0.008 and 0.037, SD 0.015)- and avoidant (bootstrapped mean 0.026, SD 0.009 and 0.049, SD 0.016)-focused coping strategies significantly moderated the relationship between the overuse of health care and cyberchondria and that between the overuse of health care and anxiety, respectively. Regarding the problem-based model, the moderating effect was significant for the relationship between the overuse of health care and anxiety (bootstrapped mean 0.007, SD 0.011; 95% CI 0.005-0.027). CONCLUSIONS: This study provides empirical evidence about the impact of coping strategies on the relationship between infodemic-related overuse of health care services and cyberchondria and anxiety. Future research can build on the findings of this study to further explore these relationships and develop and test interventions aimed at mitigating the negative impact of the infodemic on mental health.


Assuntos
Capacidades de Enfrentamento , Pandemias , Humanos , Estudos Transversais , Infodemia , Análise de Classes Latentes , Análise dos Mínimos Quadrados , Ansiedade/psicologia , Transtornos de Ansiedade/psicologia , Atenção à Saúde
7.
Eur J Health Econ ; 2024 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-38472723

RESUMO

OBJECTIVE: The objective of this study was to evaluate the psychometric properties of the EQ-5D (3L and 5L) and SF-6Dv2 in a group of Chinese patients with late-on Pompe disease (PD), and compare their performance in this patient group. METHODS: The data used in this study were obtained from a web-based and cross-sectional survey conducted in China. All participants completed the 3L, 5L, and SF-6Dv2. Information about their sociodemographic status and health conditions was also collected. The measurement properties were assessed by examining ceiling and floor effects, evaluating convergent validity, known-group validity, and test-retest reliability (Intraclass correlation coefficient [ICC] and Gwet's AC). RESULTS: A total of 117 PD patients completed the questionnaire. All dimensions of the 3L showed strong ceiling effects, ranging between 17.1 and 42.7%. All three measures showed good test-retest reliability, with ICC values ranging from 0.85 to 0.87. The Gwet's AC values showed that four out of five dimensions of the 3L showed very good agreement. All hypothesized correlations between the 3L, 5L, SF-6Dv2, and items of WHODAS were supported, indicating satisfactory convergent validity. The 5L showed stronger correlations (|r|= 0.53-0.84) with WHODAS than the other two measures. The outcomes of ANOVA indicated that the 5L had higher F-statistics than the 3L and SF-6Dv2, indicating a stronger discriminant ability to differentiate most condition groups. CONCLUSION: The 5L demonstrates lower ceiling and floor effects, higher discriminant ability, and better convergent validity than the SF-6Dv2 and 3L in patients with PD. In addition, the 5L may generate a larger utility gain compared to the other two instruments when conducting cost-effectiveness analysis.

8.
J Cancer Policy ; 40: 100475, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38552715

RESUMO

OBJECTIVE: This study aimed to use item response theory (IRT) to develop and validate a short version of the Chinese COmprehensive Score for financial Toxicity (COST-S-C) in patients with cancer. METHODS: A total of 500 patients with cancer participated in the survey. Confirmatory factor analysis (CFA) was used to assess the factor structure of the COST-S-C. A two-parameter IRT model was used to examine the item fit of the COST-S-C. Item discrimination, item characteristic curves (ICCs), item information curves (IICs), and item fit were estimated. Differential item functioning (DIF) was assessed for participants' gender and age. Reliability, convergent and discriminant validity was examined as well as estimating the optimal cut-off points of the COST-S-C. RESULTS: The CFA results supported the bi-factor structure of the COST-S-C. The IRT analysis findings revealed that several items showed problems with the ICCs, providing little information in terms of IICs as well as poor discrimination. Item 5 showed a negligible DIF problem with age. A valid 3-item COST-S-C scale and its optimal cut-off point was developed. CONCLUSIONS: The COST-S-C is a valid and quick screening tool used to distinguish patients with cancer who report significant financial toxicity in various medical settings.


Assuntos
Neoplasias , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Reprodutibilidade dos Testes , Análise Fatorial , Idoso , Psicometria , China , Estresse Financeiro
9.
Health Qual Life Outcomes ; 22(1): 2, 2024 Jan 03.
Artigo em Inglês | MEDLINE | ID: mdl-38172916

RESUMO

OBJECTIVE: The EQ-VAS is an important component of the EQ-5D questionnaire. However, there is limited evidence comparing its performance to the EQ-5D utility score, which restricts its use in the population. This study aimed to EQ-5D-5L utility score and EQ-visual analogue scale (EQ-VAS) in primary care patients in Hong Kong (HK). METHODS: Secondary data analysis was performed on the data collected from a cross-sectional survey to investigate patient engagement in HK. Participants were recruited through random sampling from a single general outpatient clinic. Trained investigators conducted face-to-face interviews with all eligible patients attending the clinic. Patients who were: 1) ≥ 18 years old, 2) have visited the clinic at least once in the last 6 months, 3) no cognitive problems, and 4) can speak and understand the local language. Pearson correlation was used to explore the association between EQ-5D utility and EQ-VAS score. Ordinary least squares regression and heteroscedastic Tobit regression models were adopted to analyze the EQ-VAS and EQ-5D utility data, respectively. RESULTS: The analysis included data from 1,004 responses (response rate = 65%). Around 52.7% of participants were female, 25.9% completed tertiary or above education, and 75.1% living with chronic disease. The mean EQ-5D utility and EQ-VAS score were 0.92 (SD = 0.13) and 72.27 (SD = 14.69), respectively. A significant association was found between EQ-5D utility and EQ-VAS score, with coefficients ranging from 0.335 (participants who divorced) to 0.744 (participants living alone). Around 98.5% reported having no problems with 'Self-care', followed by 'Usual activities' (96.3%), 'Mobility' (91.5%) and 'Anxiety/depression' (79.9%). The correlation between EQ-VAS score and EQ-5D utility was positive for each dimension of the EQ-5D instrument (correlation coefficients ranged between 0.211 and 0.623). Age strongly influenced the magnitude and trajectory of EQ-VAS score and utility, as observed in the changes. The regression model showed that 'Mobility', 'Pain/discomfort', and 'Anxiety/depression' have considerable influence on EQ-VAS score. CONCLUSIONS: This study compared the EQ-5D utility score and EQ-VAS in HK primary care setting. Although heterogeneity existed, the EQ-VAS and utility score are significantly correlated and reliable for evaluating health-related quality of life in this population.


Assuntos
Nível de Saúde , Qualidade de Vida , Humanos , Feminino , Adolescente , Masculino , Qualidade de Vida/psicologia , Estudos Transversais , Escala Visual Analógica , Inquéritos e Questionários , Atenção Primária à Saúde
10.
Eur J Health Econ ; 25(1): 103-115, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36809586

RESUMO

OBJECTIVE: To assess the psychometric properties of the EuroQol-5-Dimension five-level instrument (EQ-5D-5L) proxy in caregivers of children and adolescents with Duchenne muscular dystrophy (DMD) or spinal muscular atrophy (SMA). METHOD: Data were collected using the EQ-5D-5L proxy for individuals with DMD or SMA, as reported by their caregivers. Ceiling and floor effects, reliability (Cronbach's alpha), convergent and divergent validity (Spearman's correlation coefficient and Bland-Altman plot) and known-group validity (analysis of variance) was used to assess the instrument's psychometric properties. RESULTS: Totally, 855 caregivers completed the questionnaire. Significant floor effects were observed for most dimensions of the EQ-5D-5L in both SMA and DMD samples. The EQ-5D-5L was strongly correlated with the hypothesized subscales of the SF-12, which confirmed satisfactory convergent and divergent validity. The EQ-5D-5L can significantly differentiate between impaired functional groups for individuals, demonstrating satisfactory discriminative ability. The agreement between the EQ-5D-5L utility and EQ-VAS scores was poor. CONCLUSIONS: Based on the measurement properties assessed in this study, the EQ-5D-5L proxy is a valid and reliable tool for measuring the health-related quality of life of individuals with DMD or SMA rated by caregivers. Further studies should examine the content validity of the EQ-5D as well as the performance of its young version in these two patient groups.


Assuntos
Atrofia Muscular Espinal , Distrofia Muscular de Duchenne , Criança , Humanos , Adolescente , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e Questionários , Psicometria/métodos
11.
Health Qual Life Outcomes ; 21(1): 123, 2023 Nov 15.
Artigo em Inglês | MEDLINE | ID: mdl-37968716

RESUMO

OBJECTIVES: Spinal muscular atrophy (SMA) is a rare monogenic neuromuscular disorder caused by loss of function mutations. Measuring health-related quality of life to support economic evaluations in this population is encouraged. However, empirical evidence on the performance of preference-based measures (PBMs) in individuals with SMA is limited. This study aimed to assess the psychometric properties of the EQ-5D-5L and the Patient-Reported Outcomes Measure Information System Preference measure (PROPr) in individuals with SMA. METHODS: The data used in this study were obtained via a web-based, cross-sectional survey. All participants completed the self-reporting EQ-5D-5L and PROMIS-29 questionnaires. Information about their socioeconomic and health status was also obtained. Ceiling and floor effects, convergent and divergent validity, known-group validity, and the agreement between the two measures were assessed. RESULTS: Strong ceiling and floor effects were observed for four dimensions of the EQ-5D-5L and three subscales, including pain intensity, pain interference, and physical function, of the PROMIS-29. All hypothesized associations between EQ-5D-5L/PROMIS-29 and other neuromuscular questions were confirmed, supporting good convergent validity. Moreover, both EQ-5D-5L and PROPr scores differentiated between impaired functional groups, demonstrating good discriminative ability. Poor agreement between the EQ-5D-5L and PROPr utility scores was observed. CONCLUSIONS: The EQ-5D-5L and PROPr both appear to be valid PBMs for individuals with SMA. However, PROPr yielded considerably lower utility scores than EQ-5D-5L and their agreement was poor. Therefore, these two PBMs may not be used interchangeably in economic evaluations of SMA-related interventions.


Assuntos
Atrofia Muscular Espinal , Qualidade de Vida , Humanos , Estudos Transversais , Nível de Saúde , Inquéritos e Questionários , Psicometria/métodos , Reprodutibilidade dos Testes
12.
JMIR Public Health Surveill ; 9: e50147, 2023 Oct 31.
Artigo em Inglês | MEDLINE | ID: mdl-37906229

RESUMO

BACKGROUND: Rare diseases (RDs) affect millions of people worldwide, and these diseases can severely impact the health-related quality of life (HRQoL) of those affected. Despite this, there is a lack of research measuring HRQoL using the EQ-5D-5L, which is one of the most widely used generic preference-based instruments to measure HRQoL in populations living with RDs. OBJECTIVE: This study aimed to measure HRQoL using the EQ-5D-5L in a large number of patients with various types of RDs in China, and to examine the relationship between respondents' socioeconomic characteristics and preference-based health utility scores. METHODS: The data used in this study were obtained from a web-based survey conducted in China. The survey aimed to explore and understand the health and socioeconomic status of patients with RDs in China. We recruited registered and eligible members, including patients or their primary caregivers, from 33 RD patient associations to complete the questionnaires via their internal social networks. HRQoL was measured using the EQ-5D-5L utility score, which was calculated based on an established Chinese value set. Utility scores have been presented based on demographics and disease-related information. Univariate linear regression analysis was used to assess the differences in the EQ-5D-5L utility scores between subgroups. RESULTS: A total of 12,502 respondents completed the questionnaire and provided valid responses, including 6919 self-completed respondents and 5583 proxy-completed respondents. Data from 10,102 participants over the age of 12 years were elicited for analysis. Among patients with RDs, 65.3% (6599/10,102), 47.5% (4799/10,102), 47.0% (4746/10,102), 24.8% (2506/10,102), and 18.4% (1855/10,102) reported no problems for "self-care," "usual activities," "mobility," "pain/discomfort," and "anxiety/depression," respectively. A full health state was reported by 6.0% (413/6902) and 9.2% (295/3200) of self- and proxy-completed patients, respectively. Among self-completed patients, 69.9% (4826/6902) and 50.4% (3478/6902) reported no problems for "self-care" and "usual activities," respectively, whereas only 17.7% (1223/6902) reported problems for "anxiety/depression." Proxy-completed respondents showed a higher proportion of reporting extreme problems than self-completed respondents in all 5 dimensions. The mean utility scores reported by self- and proxy-completed respondents were 0.691 and 0.590, respectively. Different types of caregivers reported different utility scores, and among them, proxy-completed (mother) respondents reported the highest mean utility score. CONCLUSIONS: The establishment of a normative profile for RD patients can facilitate patients' adaptation and assess the effectiveness of interventions to improve the HRQoL and well-being of this population. Differences between self- and proxy-completed HRQoL assessed by the EQ-5D-5L have been identified in this study. This finding highlights the importance of incorporating perspectives from both patients and their proxies in clinical practice. Further development of the patient cohort is necessary to assess long-term changes in HRQoL in the RD population.


Assuntos
Qualidade de Vida , Doenças Raras , Humanos , Criança , Doenças Raras/epidemiologia , China/epidemiologia , Povo Asiático , Depressão
13.
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.

14.
JMIR Public Health Surveill ; 9: e47556, 2023 09 29.
Artigo em Inglês | MEDLINE | ID: mdl-37773621

RESUMO

BACKGROUND: The COVID-19 pandemic has led to an increase in known risk factors for mental health problems. Although medical information available through the internet and smartphones has greatly expanded, people's ability to seek, eschew, and use reliable web-based medical information and services to promote their mental health remains unknown. OBJECTIVE: This study aims to explore the associations between coronaphobia and 4 frequently reported mental health problems, loneliness, irritability, depression, and stigma, during the COVID-19 pandemic and to assess the moderating effects of eHealth literacy (eHL) on the adjustment of these relationships in Chinese young adults. METHODS: The data used in this study were collected from a web-based survey of the general Chinese population, aged between 18 and 30 years, conducted in China between December 2022 and January 2023. A nonprobability snowball sampling method was used for data collection. A Bayesian structural equation model (BSEM) using parameter expansion was used to estimate the moderating effect of eHL on the relationship between coronaphobia and psychological problems. The posterior mean and 95% highest density intervals (HDIs) were estimated. RESULTS: A total of 4119 participants completed the questionnaire and provided valid responses. Among them, 64.4% (n=2653) were female and 58.7% (n=2417) were rural residents. All measures showed statistically significant but minor-to-moderate associations (correlation coefficients ranged from -0.04 to 0.65). Significant heterogeneity was observed between rural and urban residents at the eHL level, and coronaphobia was observed. The BSEM results demonstrated that eHL was a significant moderator in reducing the negative effects of coronaphobia on loneliness (posterior mean -0.0016, 95% HDI -0.0022 to -0.0011), depression (posterior mean -0.006, 95% HDI -0.0079 to -0.004), stigma (posterior mean -0.0052, 95% HDI -0.0068 to -0.0036), and irritability (posterior mean -0.0037, 95% HDI -0.0052 to -0.0022). The moderating effects of eHL varied across the rural and urban subsamples. CONCLUSIONS: Using BSEM, this study demonstrated that improving eHL can significantly mitigate the negative effects of coronaphobia on 4 COVID-19-related mental health problems in Chinese young adults. Future eHL initiatives should target rural communities to ensure equal access to information and resources that can help protect their mental health during the pandemic.


Assuntos
COVID-19 , Depressão , Letramento em Saúde , Solidão , Estigma Social , Telemedicina , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto Jovem , Teorema de Bayes , COVID-19/epidemiologia , COVID-19/etnologia , COVID-19/psicologia , Depressão/epidemiologia , População do Leste Asiático/psicologia , População do Leste Asiático/estatística & dados numéricos , Letramento em Saúde/métodos , Solidão/psicologia , Pandemias , Inquéritos e Questionários , Telemedicina/métodos , Telemedicina/estatística & dados numéricos
15.
J Med Internet Res ; 25: e48308, 2023 08 15.
Artigo em Inglês | MEDLINE | ID: mdl-37581916

RESUMO

BACKGROUND: Smartphone apps have been beneficial in controlling and preventing the COVID-19 pandemic. However, there is a gap in research surrounding the importance of smartphone app functions from a user's perspective. Although the insights and opinions of different stakeholders, such as policymakers and medical professionals, can influence the success of a public health policy, any strategy will face difficulty in achieving the expected effect if it is not based on a method that users can accept. OBJECTIVE: This study aimed to assess the importance of a hypothetical smartphone app's functions for managing health during a pandemic based on the perspective of user preferences. METHODS: A cross-sectional and web-based survey using the best-worst scaling (BWS) method was used to investigate the general population's preferences for important smartphone app functions. Participants were recruited from a professional surveying company's web-based surveying panel. The attributes of the BWS questionnaire were developed based on a robust process, including literature review, interviews, and expert discussion. A balanced incomplete block design was used to construct the choice task to ensure the effectiveness of the research design. Count analysis, conditional logit model analysis, and mixed logit analysis were used to estimate preference heterogeneity among respondents. RESULTS: The responses of 2153 participants were eligible for analysis. Nearly 55% (1192/2153) were female, and the mean age was 31.4 years. Most participants (1765/2153, 81.9%) had completed tertiary or higher education, and approximately 70% (1523/2153) were urban residents. The 3 most vital functions according to their selection were "surveillance and monitoring of infected cases," "quick self-screening," and "early detection of infected cases." The mixed logit regression model identified significant heterogeneity in preferences among respondents, and stratified analysis showed that some heterogeneities varied in respondents by demographics and COVID-19-related characteristics. Participants who preferred to use the app were more likely to assign a high weight to the preventive functions than those who did not prefer to use it. Conversely, participants who showed lower willingness to use the app tended to indicate a higher preference for supportive functions than those who preferred to use it. CONCLUSIONS: This study ranks the importance of smartphone app features that provide health care services during a pandemic based on the general population's preferences in China. It provides empirical evidence for decision-makers to develop eHealth policies and strategies that address future public health crises from a person-centered care perspective. Continued use of apps and smart investment in digital health can help improve health outcomes and reduce the burden of disease on individuals and communities.


Assuntos
COVID-19 , Aplicativos Móveis , Humanos , Feminino , Adulto , Masculino , Pandemias/prevenção & controle , Projetos de Pesquisa , Estudos Transversais , COVID-19/epidemiologia , COVID-19/prevenção & controle , Inquéritos e Questionários , Smartphone
16.
Health Qual Life Outcomes ; 21(1): 67, 2023 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-37420281

RESUMO

OBJECTIVE: This study assesses the association between health-related quality of life (HRQoL) for pediatric patients with osteogenesis imperfecta (OI) and their caregivers' eHealth literacy (eHL), financial well-being, and mental health along with the impact of eHealth literacy on the financial well-being and mental health of OI caregivers. METHODS: Participants were recruited from a member pool of two OI patient organizations in China. Information about patients' HRQoL and their caregivers' eHL, financial well-being, and mental health was collected. Structure equation modeling (SEM) was used to estimate the relationship between the measures. The robust weighted least square mean and variance adjusted estimator was used. Three criteria, the comparative fit index, the Tucker-Lewis index, and the root mean square error of approximation, were used to evaluate the goodness-of-fit of the model. RESULTS: A total of 166 caregivers completed the questionnaires. Around 28.3% indicated that pediatric OI patients experienced problems related to mobility, and 25.3% reported difficulty doing usual activities. Around 52.4% of caregivers reported that their care receivers have some emotional problems while 8.4% reported that their care receivers have "a lot of" emotional problems. 'Some problems' on all dimensions on EQ-5D-Y was the most frequently reported health state (13.9%), and around 10.0% have no problems on all dimensions on EQ-5D-Y. Caregivers tended to show a significantly high eHL, financial well-being, and mental health when their care receivers reported no problems with usual activities and emotions. The SEM demonstrated a significant and positive relationship between eHL, financial well-being, and mental health. CONCLUSION: OI caregivers with high eHL reported satisfactory financial well-being and mental health; their care receivers rarely reported living with poor HRQoL. Providing multicomponent and easy-to-learn training to improve caregivers' eHL should be highly encouraged.


Assuntos
Osteogênese Imperfeita , Qualidade de Vida , Humanos , Criança , Qualidade de Vida/psicologia , Cuidadores/psicologia , Saúde Mental , Alfabetização , Inquéritos e Questionários
17.
Digit Health ; 9: 20552076231181475, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37334320

RESUMO

Objectives: This study aimed to investigate the associations between eHealth literacy, preferences for financial decision-making, and financial toxicity (FT) in a sample of Chinese cancer patients. Methods: Eligible cancer patients were invited to participate in a cross-sectional survey from January to April 2021. Three measures (eHealth literacy scale, control preference scale, and COST) were used to analyze patients' eHealth literacy, decisional preferences, and FT, respectively. Wilcoxon signed-rank test and Kruskal-Wallis H test assessed the differences between population subgroups. Binary logistic and multivariate linear regression models were used to assess the relationships between eHealth literacy, decisional preferences, and FT. Results: A total of 590 cancer patients completed the questionnaire. We found that high FT was associated with poor ECOG performance, severe cancer stage, and longer cancer duration. Patients who preferred to adopt collaborative attitude toward decision-making showed a significantly higher eHealth literacy. However, there was an inverse relationship between eHealth literacy and a patient-driven attitude toward decision-making in female cancer patients. Regression analysis indicated that patients who were highly educated and actively employed might report a higher eHealth literacy. A significant relationship was found between high eHealth literacy and low FT. However, this relationship became insignificant when the background characteristics of cancer patients were taken into account. Conclusions: A relationship between enhanced eHealth literacy, preference for collaborative decision-making, and low risk of FT is identified. Practical implication: Interventions to improve patients' ability to use quality and reliable web-based information on cancer care should be encouraged.

18.
J Affect Disord ; 333: 147-153, 2023 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-37084967

RESUMO

OBJECTIVE: This study aimed to assess and compare the health-related quality of life (HRQoL) in a group of paediatric patients with Duchenne muscular dystrophy (DMD) with and without comorbid attention-deficit hyperactivity disorder (ADHD) diagnosis using a propensity-scoring method (PSM). METHOD: Data used in this study obtained from a cross-sectional and web-based survey to investigate the HRQoL for paediatric DMD patients. Data about those who diagnosed with ADHD was elicited for analysis. PSM was used to ensure generation of 1:5 matched pairs with no differences in several background characteristics between DMD patients with and without ADHD. Wilcoxon rank sum test and Multiple logistic regression models were used to measure the differences in HRQoL between matched DMD patients with and without ADHD. RESULTS: After PSM, 630 DMD patients were assigned to the 'No ADHD' group, and successfully matched with another 126 DMD patients in the ADHD comparison group. Compared to DMD patients without ADHD, those with ADHD were more likely to report having symptoms and side-effects. Additionally, paediatric DMD patients with ADHD reported a significantly lower HRQoL on the subscales of emotional, social, and school functioning as compared to those without ADHD. CONCLUSION: This study demonstrated a higher burden of clinical symptoms, health service utilization, and psychosocial factors on HRQoL in DMD patients with ADHD compared to those without ADHD. Future studies using global data may provide meaningful comparisons with our results, and the efficacy of ADHD programs in DMD patients can be compared based on their HRQoL.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Distrofia Muscular de Duchenne , Humanos , Criança , Adolescente , Qualidade de Vida/psicologia , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Distrofia Muscular de Duchenne/complicações , Distrofia Muscular de Duchenne/epidemiologia , Distrofia Muscular de Duchenne/psicologia , Estudos Transversais , Comorbidade
19.
Front Public Health ; 11: 1139786, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36908426

RESUMO

Objective: This study aimed to examine the associations among mental health related eHealth literacy (eHL), mental health-seeking attitude, and wellbeing among Chinese young electronic media users during the COVID-19 pandemic. Methods: A web-based cross-sectional survey was conducted in Guangzhou, China. The modified eHealth literacy Scale, Mental Help-Seeking Attitudes Scale, and Short Warwick-Edinburgh Mental Wellbeing Scale were used. Structural equation modeling (SEM) examined the associations between them and was adjusted by several controlled variables. Results: Totally, 1,008 participants completed the questionnaire and provided valid responses. The eHL showed a statistically significant and direct effect on mental wellbeing in this sample. The higher the level of eHL, the better wellbeing of the participants. The mental health-seeking attitude is also positively correlated with mental wellbeing, indicating that the more positive attitude toward seeking mental health services, the better the wellbeing participants reported. The higher level of eHL is significantly associated with a more positive attitude toward seeking mental health services. Conclusion: Training to improve eHL may optimize young electronic media users' mental health outcomes. Development and use of a mental health specific eHL instrument in future studies should be encouraged.


Assuntos
COVID-19 , Telemedicina , Humanos , Saúde Mental , Estudos Transversais , Pandemias , China
20.
Disabil Rehabil ; 45(20): 3366-3372, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-36102606

RESUMO

PURPOSE: This study aimed to generate the health state classification system (HCS) of a condition-specific preference-based measure to capture the health-related quality of life (HRQoL) of patients with myasthenia gravis (MG) from the 15-item Myasthenia Gravis Quality of Life Scale (MG-QoL15r). MATERIALS AND METHODS: An HCS was derived from the MG-QoL15r in a large sample of 1739 patients with MG based on psychometric analysis, including factor analysis, item response theory analysis, and discussions with experts. Reliability, construct and convergent validity, and item fit of the HCS were further assessed using another sample. RESULTS: The HCS has six dimensions: social activity, hobbies and fun activities, meeting family needs, work performance, mobility, and emotion, and it demonstrates good internal consistency reliability. The unidimensionality of the HCS was confirmed using confirmatory factor analysis. Satisfied convergent validity was supported by a significant association with the 12-item Short Form Survey (SF-12). CONCLUSIONS: Based on a solid process of development and consultations with clinical professionals and patients, a valid MG-specific preference-based measure, MGQoL-6D, was developed. Further research will estimate the local preference weight to support the MG-related cost-utility analysis.IMPLICATION FOR REHABILITATIONA new condition-specific health state classification system (HCS) named Myasthenia gravis Quality of Life Scale (MGQoL-6D) is proposed.MGQoL-6D classifies MG health states as a combination of six dimensions with three response levels.The dimensions of the HCS are social activity, hobbies and fun activity, family needs, work performance, mobility, and emotion.The HCS and the upcoming value set of the MGQoL-6D could support the cost-effectiveness analysis of MG-related clinical and rehabilitated interventions.


Assuntos
Miastenia Gravis , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários , Emoções , Miastenia Gravis/psicologia , Psicometria
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