Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China.

BACKGROUND: It has become increasingly important to measure the health-related quality of life (HRQoL) of rare diseases in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of a specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients, and to understand the problems of most concern. METHODS: A total of 651 children aged from 2 to 18 were enrolled from the Children's Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-report version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0). Independent samples t-test, one-way ANOVA, or Kruskal-Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercept were applied to analyze the relationship between socioeconomic variables and both the total score and subdomain scores. RESULTS: The total PedsQL scores of Patent ductus arteriosus (PDA), Infantile agranulocytosis, Autoimmune thrombocytopenia (ITP), Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain-barre syndrome, Glycogen storage disease, and Langerhans cell histiocytosis children were 79.65 ± 5.46, 95.88 ± 3.48, 71.39 ± 3.27, 91.77 ± 6.35, 76.18 ± 6.92, 96.33 ± 4.22, 77.85 ± 8.90, 95.99 ± 3.31, 85.77 ± 4.56, 82.97 ± 4.13 and 77.6 ± 5.15, respectively. Age was significantly associated with physical functioning, school functioning, and psychosocial health scores. The household registration place was significantly related to the total score. The most urgent desire of patients was to reduce the overall medical costs. CONCLUSIONS: This study showed that patients with PDA had the lowest physical functioning score, while patients with ITP scored the lowest in the emotional functioning, social functioning, school functioning, psychosocial health, and total scores. Incentive policies should be further adopted to improve orphan drug availability and reduce the economic burden of rare diseases.

Use of appropriate healthcare technologies: a cross-sectional study in rural Zhejiang of China.

BACKGROUND: Appropriate healthcare technologies (AHTs) are an important strategy for improving the availability and accessibility of healthcare services. It is not clear what impact AHTs have on health workers and consumers; and whether those AHTs can continue in place without special or ongoing financial support. This study investigated the attitudes of health workers and consumers towards AHTs. METHODS: Health facilities from five counties in Zhejiang were surveyed. Participants of the study included all health workers who were involved in the delivery of AHTs in the selected organizations and a group of randomly selected patients who sought services from the participating organizations. A total of 822 questionnaires from health workers and 693 questionnaires from patients were collected for data analyses. The questionnaires measured perceptions and attitudes of respondents towards AHTs using a Likert scale. RESULTS: The respondents delivering public health services rated the highest scores to AHTs (4.42 ± 0.7), followed by those engaged in management of chronic conditions (4.41 ± 0.57) and Traditional Chinese Medicine (TCM) (4.29 ± 0.55). Around 90% of health workers believed that AHTs were meaningful for rural patients; however, only 69% of health workers believed that the technologies encouraged by the government were sufficiently developed or "mature", and more than 24% acknowledged difficulties in using those technologies. Overall, patients were satisfied with AHTs, with 71.6% feeling "very satisfied" or "satisfied", 24.2% feeling "acceptable" and 1.6% feeling "dissatisfied". Most (83%) patients were satisfied or very satisfied with Traditional Chinese Medicine, compared with management of chronic conditions (80%), family planning (67%), public health services (64%), and finally with maternal and child health care (59%). CONCLUSIONS: Local acceptability should be taken into consideration in determination of AHTs; consumer health literacy needs improvement, particularly in relation to public health and preventive services.

Social Determinants of Intrinsic Capacity: A National Cohort Study.

INTRODUCTION: Intrinsic capacity (IC), a composite of physical and mental capacities, is a marker of healthy aging. Social determinants of health (SDOH), namely the economic and social environments across a lifespan, are the most fundamental factors influencing health outcomes and health disparities. However, there is limited evidence on the influence of the individual and combined burden of the SDOH on IC. METHODS: Data were obtained from the China Health and Retirement Longitudinal Study (2011-2015), and data analysis was conducted in 2023. Linear mixed-effect regression was employed to investigate the association between SDOH and IC in a longitudinal analysis. RESULTS: This study comprised 7,669 participants (mean [SD] age, 68.5 [7.1] years; 49.8% female; mean [SD] IC, 7.2 [1.6]). In the longitudinal analysis, all five SDOH domains were independently and significantly associated with IC. The absence of social association within the social and community context domain exhibited the weakest association with IC (ß: -0.11 [95% CI -0.20, -0.02]), while illiteracy within the education access and quality domain demonstrated the strongest association with IC (ß: -0.51 [95% CI -0.60, -0.42]). Furthermore, the adverse effects of SDOH on IC became more distinguishable with the cumulative number of SDOH variables (coefficient for 2 SDOH, -0.41 [-0.64, -0.19]; 3 SDOH, -0.70 [-0.93, -0.48]; ≥4 SDOH, -1.10 [-1.33, -0.88]) compared with those without any SDOH. CONCLUSIONS: Certain SDOH levels were significantly and negatively associated with IC. Targeted interventions may be needed to improve SDOH in individuals at high risk of poor IC.

Factors associated with graduation examination results from standardised residency training in Zhejiang Province, China: a cross-sectional analysis of medical examination results data from 2020.

OBJECTIVE: Standardised residency training is an important part of postgraduation medical education in China. The graduation examination tests the effect of residency training and is an important measure to guarantee the quality of residency training. This study aimed to analyse the results and associated factors of the graduation examination of standardised residency training in Zhejiang Province in 2020. DESIGN: Cross-sectional analysis of examination results data. SETTING: Medical and health institutions and universities in Zhejiang Province. PARTICIPANTS: A total of 5555 examinees took the graduation examination of standardised residency training in Zhejiang Province in 2020. PRIMARY OUTCOMES: Pass rates of the practical skill examination and written examination. RESULTS: The pass rates for the practical skill examination and written examination were 91.8% and 96.5%, respectively. Examinees aged 30 and above (adjusted OR (AOR)=0.48, 95% CI 0.26 to 0.89), those with 3 years (AOR=0.19, 95% CI 0.09 to 0.43) and 2 years (AOR=0.61, 95% CI 0.40 to 0.96) of training, those who retook the examination (AOR=0.28, 95% CI 0.20 to 0.391) and those from primary healthcare institutions (AOR=0.56, 95% CI 0.40 to 0.77) were less likely to pass the practical skill examination. Examinees with a postgraduate degree and those from colleges and universities had higher pass rates in the written examination (AOR=6.37, 95% CI 1.95 to 23.34; AOR=2.87, 95% CI 1.40 to 6.65, respectively). Examinees aged 30 and above (AOR=0.08, 95% CI 0.01 to 0.30), those aged between 25 and 30 (AOR=0.22, 95% CI 0.03 to 0.80), those who retook the examination (AOR=0.04, 95% CI 0.03 to 0.07), those from second-level hospitals (AOR=0.58, 95% CI 0.39 to 0.87) and those who failed the practical skill examination (AOR=0.17, 95% CI 0.12 to 0.25) were less likely to pass the written examination. CONCLUSIONS: The pass rate of the graduation examination of standardised residency training was associated with the individual characteristics of the examinees. The results of practical skill examination were related to the results of the written examination.

Healthcare Professionals' Views of the Integrated County Healthcare Consortium in Zhejiang, China.

Introduction: The integrated county healthcare consortium (ICHC) is becoming an important measure to improve the capacity of primary-level medical services and to achieve grading diagnosis and treatment system in China. However, it is not clear whether health professionals are satisfied with this reform and what are the problems with it. This study aimed to understand the satisfaction of healthcare professionals to the ICHC in Zhejiang Province, China, and analyze the problems and improvement measures of the ICHC. Methods: A cross-sectional study was carried out in the 11 pilot counties (cities and districts) implementing the construction of the ICHC in Zhejiang in November 2019. Healthcare professionals from the leading county-level hospital, three township health centers (THCs) or community health centers (CHCs) in each ICHC were invited to participate in this survey. Results: A total of 3531 healthcare professionals were included, 85.92% of the participants agreed that the integration of the Centers for Disease Control and Prevention (CDC) and other professional public health institutions into the construction of ICHC could actively promote basic public health work. The most severe problem was the lack of financial guarantee fund input (severity score: 2.92 ± 1.76). The most crucial measure to promote the construction of the ICHC was to increase government financial input and improve the security mechanism (importance score: 4.81 ± 0.47). The satisfaction of the healthcare professionals to the ICHC was 89.41%. The satisfaction of healthcare professionals from county-level hospitals was 2.37 (95% CI: 1.760-3.238) times higher than that of healthcare professionals from the township health centers (THCs) or community health centers (CHCs). The satisfaction of health professionals with a college degree or below was 3.215 (95% CI: 1.413-6.786) times higher than that of health professionals with a master's degree or above. Conclusions: Zhejiang Province has taken adequate measures to promote the construction of the ICHC. However, there are still some problems. Appropriate and effective policies should be implemented to enhance policy coordination and promote competition among ICHCs, as well as to strengthen medical service quality management and improve performance appraisal scheme.

Assessment of Knowledge, Attitude, and Practice Toward COVID-19 in China: An Online Cross-Sectional Survey.

To analyze the level of knowledge, attitude, and practice about COVID-19 among Chinese residents, noninterventional and anonymous survey was carried out with an online questionnaire. Among the survey respondents (n = 619), 59.9% were female, 61.1% were from 18 to 30 years of age, and 42.3% held an undergraduate's degree. The mean scores for each scale were as follows: perceived knowledge (36.3 ± 6.1), attitude (29.4 ± 4.7), practice (44.1 ± 4.8), total score (109.7 ± 13.2), barrier (0.2 ± 0.7), and cognition and behavior change score (8.5 ± 1.4). Perceived knowledge, attitude, practice, total score, and cognition and behavior changes were significantly and positively correlated, whereas barrier was negatively correlated with those scales (P < 0.001). Linear regressions revealed that those respondents who were medical professionals, civil servants, employees of state-owned enterprises and public institutions, and had relatively higher level of education were associated with a higher perceived knowledge score, attitude score, practice score, and total score. Higher mean cognition and behavior change score was associated with company employees (8.8 ± 1.3). More than half of the respondents (51.4%) were optimistic about the government's interventional measures. The respondents in China had good knowledge, positive attitude, and active practice toward COVID-19, yet, it is advisable to strengthen nationwide publicity and focus on the target undereducated population by means of We-Chat, microblog, website, and community workers for better control effect.

Photoredox Generation of N-Centered Hydrazonyl Radicals Enables the Construction of Dihydropyrazole-Fused gem-Difluoroalkenes.

An efficient visible-light-promoted N-radical-mediated tandem radical cyclization/defluorinated alkylation of ß,γ-unsaturated hydrazones, and α-trifluoromethyl alkenes is described. This protocol provides a general and effective route to synthesize various dihydropyrazole-fused gem-difluoroalkenes at moderate to excellent yields under redox-neutral, metal-free, and mild conditions.

Synthesis of gem-Difluoroalkenes via Zn-Mediated Decarboxylative/Defluorinative Cross-Coupling.

An efficient and mild Zn-mediated decarboxylative/defluorinative alkylation of α-trifluoromethyl alkenes using N-hydroxyphthalimide esters as radical precursors was developed. Several α-trifluoromethyl alkenes were readily coupled to a wide range of primary, secondary, and tertiary radicals, affording the desired gem-difluoroethylenes in moderate to excellent yields. This reaction protocol was also successfully applied to the construction of complex molecules such as the bioactive natural dehydroabietic acid and glycosyl groups bearing the gem-difluoroethylene moiety.

Synthesis of Monofluoroalkenes through Visible-Light-Promoted Defluorinative Alkylation of gem-Difluoroalkenes with 4-Alkyl-1,4-dihydropyridines.

In this study, a facile and efficient method to synthesize monofluoroalkenes by photoredox catalytic defluorinative alkylation of gem-difluoroalkenes with 4-alkyl-1,4-dihydropyridines under mild conditions (room temperature) is described. This novel strategy is applicable for a broad range of gem-difluoroalkene substrates with good functional group tolerance and a variety of 4-alkyl-1,4-dihydropyridines (including primary, secondary, and even tertiary alkyl radicals). Moreover, it also allows the challenging radical coupling with glycosyl-based 4-alkyl-1,4-dihydropyridines (DHPs) to synthesize monofluoroalkenylated saccharides.