Age Differences in Electronic Mental Health Literacy: Qualitative Study.

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.

University Students' Vaccination Intention after the Fifth Wave of the COVID-19 Outbreak in Hong Kong: Inspiration from a Health Belief Model.

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.

Measurement properties of the EQ-5D-Y-3L, PedsQL 4.0, and PROMIS-25 Profile v2.0 in pediatric patients with spinal muscular atrophy.

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.

Psychometric testing of the Chinese version of the International Classification of Functioning, Disability, and Health Measure of Participation and Activities Screener in people with stroke.

BACKGROUND: Clinicians need a validated measure to assess the activity and participation of Chinese people with stroke. OBJECTIVES: To culturally adapt and psychometrically test the Chinese (Cantonese) version of the International Classification of Functioning, Disability and Health Measure of Participation and Activities (C-IMPACT-S) in community-dwelling people with stroke. METHODS: We followed the standard translation procedures to culturally adapt the C-IMPACT-S. Then we administered the C-IMPACT-S to 100 people with stroke and 50 healthy counterparts for psychometric testing, including the ceiling and floor effects, internal consistency, test - retest, measurement error, minimal detectable change, correlations with other outcome measures, known-group validity and optimal cutoff scores. RESULTS: The C-IMPACT-S has no floor effects but ceiling effects in item 5. It has poor to excellent (Cronbach's α = 0.56-95) internal consistency and fair to excellent (Intraclass correlation coefficients = 0.58-1.00) test-retest reliability. The overall C-IMPACT-S mean score and activity and participation component mean scores had statistically significant no to weak correlations with the Fugl-Meyer Assessment, the Chinese versions of Geriatric Depression Scale, Fatigue Assessment Scale, Lawton Instrumental Activities of Daily Living Scale and Community Integration Measure. The stroke participants had lower C-IMPACT-S scores then their health counterparts. The optimal cutoff scores of the overall C-IMPACT-S and activity and participation domains were 88.02% (sensitivity 72%, specificity 80%), 80.56% (sensitivity 86%, specificity 68%) and 91.67% (sensitivity 68%, specificity 80%), respectively. CONCLUSIONS: C-IMPACT-S is a reliable and valid measure for assessing the levels of activity and participation of people with chronic stroke.

Out-of-Hospital Cardiac Arrest Before and During the COVID-19 Pandemic in Hong Kong: Registry-Based Study From 2017 to 2023.

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.

Moderating Effect of Coping Strategies on the Association Between the Infodemic-Driven Overuse of Health Care Services and Cyberchondria and Anxiety: Partial Least Squares Structural Equation Modeling Study.

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.

Social support and medication adherence among adult myasthenia gravis patients in China: the mediating role of mental health and self-efficacy.

BACKGROUND: Myasthenia gravis (MG), a rare chronic neuromuscular disorder, is characterized by progressive physical decline and requires long-term pharmacological treatment. Due to the decline of physical and social abilities, MG patients are in great need of social support, including tangible and emotional support. This study aims to examine the association between social support and medication adherence and the possible mediating effects of mental health and self-efficacy among MG patients. METHODS: A cross-sectional analysis of a nationwide MG registry was conducted on 865 patients under oral medication treatment in China between June and July 2022. Validated scales were used to measure the respondent's mental distress (Four-item Patient Health Questionnaire), social support (Modified Medical Outcomes Study Social Support Scale), self-efficacy for medication use (Self-efficacy for Appropriate Medication Use Scale), and medication adherence (Morisky Medication Adherence Scale, MMAS). RESULTS: The association between social support and medication adherence and possible mediating effects of mental distress and self-efficacy were tested by structural equation model, with significant demographic and disease-related factors adjusted. The respondents showed a very low level of medication adherence (71.2% poor adherence; 1.4% high adherence; mean MMAS = 4.65). The level of social support was positively associated with medication adherence, and such association was fully mediated by two indirect pathways: through self-efficacy (ß = 0.07, proportion mediated = 63.8%); and through mental distress and then self-efficacy (ß = 0.01, proportion mediated = 6.7%). CONCLUSION: Provision of social support and interventions on mental health with emphasis on improving self-efficacy for medication use may effectively improve medication adherence among MG patients.

Improving mental health literacy using web- or app-based interventions: A scoping review.

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.

Development of a rapid tool for screening financial toxicity based on the comprehensive score for financial toxicity.

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.

Measurement properties of the EQ-5D-3L, EQ-5D-5L, and SF-6Dv2 in patients with late-onset Pompe disease.

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.

Impact of Environment on Pain among the Working Poor: Making Use of Random Forest-Based Stratification Tool to Study the Socioecology of Pain Interference.

Pain interferes with one's work and social life and, at a personal level, daily activities, mood, and sleep quality. However, little research has been conducted on pain interference and its socioecological determinants among the working poor. Noting the clinical/policy decision needs and the technical challenges of isolating the intricately interrelated socioecological factors' unique contributions to pain interference and quantifying the relative contributions of each factor in an interpretable manner to inform clinical and policy decision-making, we deployed a novel random forest algorithm to model and quantify the unique contribution of a diverse ensemble of environmental, sociodemographic, and clinical factors to pain interference. Our analyses revealed that features representing the internal built environment of the working poor, such as the size of the living space, air quality, access to light, architectural design conducive to social connection, and age of the building, were assigned greater statistical importance than other more commonly examined predisposing factors for pain interference, such as age, occupation, the severity and locations of pain, BMI, serum blood sugar, and blood pressure. The findings were discussed in the context of their benefit in informing community pain screening to target residential areas whose built environment contributed most to pain interference and informing the design of intervention programs to minimize pain interference among those who suffered from chronic pain and showed specific characteristics. The findings support the call for good architecture to provide the spirit and value of buildings in city development.

Health-related quality of life in primary care patients: a comparison between EQ-5D-5L utility score and EQ-visual analogue scale.

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.

Assessing validity of the EQ-5D-5L proxy in children and adolescents with Duchenne muscular dystrophy or spinal muscular atrophy.

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.

The Utility of Echocardiogram in the Workup of Ischemic Stroke Patients.

BACKGROUND: Cardiac sources of emboli can be identified by transthoracic echocardiogram (TTE). The Canadian Best Practice Guidelines recommend routine use of TTE in the initial workup of ischemic stroke when an embolic source is suspected. However, TTEs are commonly ordered for all patients despite insufficient evidence to justify cost-effectiveness. We aim to evaluate the TTE ordering pattern in the initial workup of ischemic stroke at a regional Stroke Center in Central South Ontario and determine the proportion of studies which led to a change in management and affected length of stay (LOS). METHODS: Hospital records of 520 patients with a discharge diagnosis of TIA or ischemic stroke between October 2016 and June 2017 were reviewed to gather information. RESULTS: 477 patients admitted for TIA or ischemic stroke met inclusion criteria. 67.9% received TTE, out of which 6.0% had findings of cardiac sources of emboli including left ventricular thrombus, atrial septal aneurysm, PFO, atrial myxoma, and valvular vegetation. 2.5% of all TTE findings led to change in medical management. The median LOS of patients who underwent TTE was 2 days longer (p < 0.00001). CONCLUSION: TTE in the initial workup of TIA or ischemic stroke remains common practice. The yield of TTEs is low, and the proportion of studies that lead to changes in medical management is minimal. TTE completion was associated with increased LOS and may result in increased healthcare spending; however, additional factors prolonging the LOS could not be excluded.

Measurement properties of the EQ-5D-5L and PROPr in patients with spinal muscular atrophy.

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.

Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey.

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.

The EORTC QLU-C10D: the Hong Kong valuation study.

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.

Reliability and validity of the supine-to-stand test in people with stroke.

OBJECTIVE: To investigate the psychometric properties of the supine-to-stand test in people with stroke. DESIGN: Cross-sectional design. SUBJECTS: Fifty-two people with stroke (mean (standard deviation) age 63.13 (6.09) years; time post-stroke 93.13 (61.36) months) and 49 healthy older adults (61.90 (7.29) months). METHODS: Subjects with stroke were recruited from the community dwelling in Hong Kong and  assessed with the supineto- stand test, Fugl-Meyer Motor Assessment, ankle muscle strength test, Berg Balance Scale, limit of stability test, Timed Up-and-Go Test, Six-Minute Walk Test, Chinese version of Activities-specific Balance Confidence scale, Community Integration Measure (CIM-C), and 12-item Short-Form Health Survey (SF-12) in a university-based rehabilitation laboratory. RESULTS: The supine-to-stand test completion time demonstrated excellent intra-rater, inter-rater and test-retest reliability (intraclass correlation coefficient 0.946-1.000) for the people with stroke. The completion time was significantly negatively correlated with Berg Balance Scale, Six-Minute Walk Test, limit of stability - maximal excursion, and limit of stability - endpoint excursion results (r = -0.391 to -0.507), whereas it was positively correlated with the Timed Up-and-Go test results (r = 0.461). The optimal cut-off supine-to-stand test completion time of 5.25 s is feasible for a clinical measure to distinguish the performance of people with stroke from healthy older adults (area under the curve = 0.852, sensitivity = 81.1%, specificity = 84.0%). CONCLUSION: The supine-to-stand test is a reliable, sensitive, specific and easy-to-administer clinical test for assessing the supine-to-stand ability of people with stroke.

Children's Shyness, Frontal Brain Activity, and Anxiety in the Perioperative Context.

Although preoperative anxiety affects up to 75% of children undergoing surgery each year and is associated with many adverse outcomes, we know relatively little about individual differences in how children respond to impending surgery. We examined whether patterns of anterior brain electrical activity (i.e., a neural correlate of anxious arousal) moderated the relation between children's shyness and preoperative anxiety on the day of surgery in 70 children (36 girls, Mage = 10.4 years, SDage = 1.7, years, range 8 to 13 years) undergoing elective surgery. Shyness was assessed using self-report approximately 1 week prior to surgery during a preoperative visit (Time 1), preoperative anxiety was assessed using self-report, and regional EEG (left and right frontal and temporal sites) was assessed using a dry sensory EEG headband on the day of surgery (Time 2). We found that overall frontal EEG alpha power moderated the relation between shyness and self-reported preoperative anxiety. Shyness was related to higher levels of self-reported anxiety on the day of surgery for children with lower average overall frontal alpha EEG power (i.e., higher cortical activity) but not for children with higher average overall frontal alpha EEG power (i.e., lower cortical activity). These results suggest that the pattern of frontal brain activity might amplify some shy children's affective responses to impending surgery. Findings also extend prior results linking children's shyness, frontal brain activity, and anxiety observed in the laboratory to a real-world, ecologically salient environment.

Moderating Effect of eHealth Literacy on the Associations of Coronaphobia With Loneliness, Irritability, Depression, and Stigma in Chinese Young Adults: Bayesian Structural Equation Model Study.

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.