1.Current Research Status of Digital Technology in the Rehabilitation of Rare Neurological and Muscular Diseases
Yixuan GUO ; Yi GAO ; Yiyang YAO ; Zhuoyue QIN ; Yaofang ZHANG ; Jiaqi JING ; Jing XIE ; Jian GUO ; Shuyang ZHANG
JOURNAL OF RARE DISEASES 2025;4(1):122-131
To review the randomized controlled trials (RCTs) at home and abroad on digital intelligence (DI)-driven rehabilitation in patients of neuromuscular disease, compare the effects of DI-driven rehabilitation with traditional rehabilitation, summarize the special needs and challenges faced by patients in rehabilitation of rare neuromuscular diseases, and provide evidence for the development and quality improvement of rehabilitation for rare neuromuscular diseases. We searched PubMed, Web of Science, Embase, CNKI, VIP, and Wanfang databases for literature on neuromuscular diseases, rare diseases, digital and intelligent technologies, and rehabilitation published from the inception of the databases to June 2024. Basic and research-related information from the retrieved literature was extracted and analyzed. A total of 43 RCTs in English from 14 countries were included. The most studied diseases were Parkinson′s disease and multiple sclerosis. The application of DI-driven technologies in rehabilitation of rare neuromuscular diseases was still limited. The commonly used technologies were virtual reality (VR) games, intelligent treadmill assistance, gait training robots, hybrid assistive limb (HAL), wearable sensors and tele-rehabilitation (TR) systems. These technologies were applied in patients′ homes or rehabilitation service centers. The VR games significantly improved both static/dynamic balance functions and cognitive functions. The intelligent treadmill assistance significantly enhanced gait speed and stride length. The gait training robots significantly improved balance, gait speed and stride length of patients. The wearable exoskeletons significantly enhanced walking ability. DI-driven rehabilitation measures have great value and potential in the field of neuromuscular disease rehabilitation. Their advantages and characteristics can meet the diverse needs of rare disease patients. In the future, a hierarchical and collaborative rehabilitation service system should be established to meet the urgent needs of the rehabilitation of rare neuromuscular diseases. Combining the advantages of digitization and intelligence will provide standardized, scientific, convenient and affordable rehabilitation services to patients.
2.The Application of Digital Intelligence Technology in the Management of Non-Hospitalized Patients with Rare Diseases
Yiyang YAO ; Yi GAO ; Yixuan GUO ; Zhuoyue QIN ; Yaofang ZHANG ; Jiaqi JING ; Jing XIE ; Jian GUO ; Shuyang ZHANG
JOURNAL OF RARE DISEASES 2025;4(1):46-53
To provide references to and give suggestions to the development and optimiza-tion of Digital Intelligence (DI) technology in management of non-hospitalized patients by systematical review the application of digital technology in non-hospital settings. We designed the search strategy and used the words " rare diseases"" patient management"" non-hospitalized management"" community management"" digital intelligence"" big data"" telemedicine" as MESH terms or free words. We searched the database of PubMed, Science-Direct, Web of Science, CNKI, Wanfang and VIP from the beginning of the database to July 2024 and used computer retrieval to get the literatures on the application of DI technology in the management of patients with rare diseases in non-hospital setting. We extracted the information of the first author, country or region, publication time, research participants, DI technology application, and application effect for summary analysis. A total of 13 articles were included in this study, which were from 8 countries or regions. We found that DI technologies used were in the following forms: Internet information platform, wearable devices, telemedicine management platform and electronic database. The DI technology was used by the patients with rare diseases, patient caregivers and professional medical staffs. The application of all the forms above in different populations had good effect. The Internet information platform helped patients and their caregivers learn more about the disease and improved their self-management ability. The wearable device helped monitor the health status of patients in real time and predict the risk of emergent events. The telemedicine management platform facilitated to optimize the allocation of medical resources and strengthen doctor-patient communication. The electronic health database promoted the interconnection of data inside and outside the hospital and improved the accuracy of decision-making through data sharing. The application of DI technology in the management of patients with rare diseases in non-hospitalized settings has shown positive results. In the future, it is necessary to correct the shortcomings and to deal with the challenges in terms of accuracy, readiness, applicability, and privacy protection. Besides, the DI can be integrated into the tri-level management system of patients known as the "patient-community-hospital". It is advisable to take the advantages of digital intelligence technology to improve the efficiency and quality of management of patients in non-hospitalized settings.
3.Network analysis of anxiety, depression and perceived stress with eating behaviors in adolescents
Chinese Journal of School Health 2025;46(6):821-826
Objective:
To explore the network structure of eating behaviors with anxiety, depression and perceived stress in adolescents, so as to provide a basis for effective prevention and intervention of eating behavior problems and negative emotions in adolescents.
Methods:
Based on the Psychology and Behavior Investigation of Chinese Residents (2021) database, the study was conducted among 3 087 adolescents. Sakata Eating Behavior Scale Short From(EBS-SF) was used to investigate their eating behaviors. The Patient Health Questionnaire-9(PHQ-9), Generalized Anxiety Disorder Scale-7 Item(GAD-7), and Perceived Stress Questionnaire-3 Item (PSQ-3) were used to evaluate their depression, anxiety and perceived stress. Network analysis method was applied to construct a network of eating behaviors and negative emotional symptoms among adolescents, so as to evaluate the centrality, bridge strength, stability and accuracy of each item.
Results:
The total scores of eating behaviors, depression,anxiety and stress perception in adolescents were 17.41±4.53,6.95±6.08,4.86±5.03,9.34±3.80,respectively. The symptom with the highest intensity and expected impact was "I am only satisfied when I buy more food than I need", with a node intensity and expected impact value of 4.37. The nodes Depression and Anxiety were the most closely connected(weight=0.87). There were no statistically significant differences in the network structure( M =0.13,0.11) and network connection strength(female and male:4.16,4.06, s =0.10;urban and rural areas:4.08,4.07, s =0.01) between different sexes and residents ( P >0.05).
Conclusion
The negative impact of comorbidities such as anxiety, depression, perceived stress and eating behaviors among adolescents can be reduced through targeted prevention and intervention of core symptoms and bridging symptoms.
4.Construction of nutrition health educational guidance outline for primary and secondary school students in Shanghai
LIU Hanqing, XUE Kun, CHEN Bohao, TANG Biaoqian, LI Yiyang, YAO Shuxian, JIANG Hong, WANG Shumei
Chinese Journal of School Health 2023;44(2):219-223
Objective:
Develop a nutrition health educational guidance outline for primary and secondary school students which is adapted to the characteristics of Shanghai and meets the cognitive level of students at different levels, so as to provide a reference for planning the content and target of nutrition health education among students of different school stages.
Methods:
Through literature search and qualitative interviews, the framework of nutrition health education for primary and secondary school students in Shanghai was developed, and 21 experts in the fields of nutrition, school health and health education were invitied to conduct a Delphi consultation, and determined the content of nutrition and health education for students in each school section based on the consultation results.
Results:
The recall rate for both rounds of consultation was 100%, the degree of expert authority was 0.74 and 0.89 , and the coordination coefficients were 0.31 and 0.33( P <0.01), suggesting high credibility of expert opinion. The resulting guidance outline included 2 first level entries, 6 second level entries, 60 third level entries and corresponding entry explanations. The 2 first level entries were rational nutrition and food safety; the 6 second level entries were food and nutrients, balanced diet, good eating habits, nutritional practices, good hygiene habits and food borne diseases; the 60 third level entries needed to be studied in Level 1 were 24, Level 2 were 41, Level 3 were 55, and Level 4 were 59.
Conclusion
The nutrition health educational guidance outline for primary and secondary school students in Shanghai developed in this study focuses on key nutrition knowledge, rational dietary behaviors and nutrition practice skills, which can provide a reference and basis for the phased implementation of nutrition health education in primary and secondary schools.
5.Epidemiological Survey of Hemoglobinopathies Based on Next-Generation Sequencing Platform in Hunan Province, China.
Hui XI ; Qin LIU ; Dong Hua XIE ; Xu ZHOU ; Wang Lan TANG ; De Guo TANG ; Chun Yan ZENG ; Qiong WANG ; Xing Hui NIE ; Jin Ping PENG ; Xiao Ya GAO ; Hong Liang WU ; Hao Qing ZHANG ; Li QIU ; Zong Hui FENG ; Shu Yuan WANG ; Shu Xiang ZHOU ; Jun HE ; Shi Hao ZHOU ; Fa Qun ZHOU ; Jun Qing ZHENG ; Shun Yao WANG ; Shi Ping CHEN ; Zhi Fen ZHENG ; Xiao Yuan MA ; Jun Qun FANG ; Chang Biao LIANG ; Hua WANG
Biomedical and Environmental Sciences 2023;36(2):127-134
OBJECTIVE:
This study was aimed at investigating the carrier rate of, and molecular variation in, α- and β-globin gene mutations in Hunan Province.
METHODS:
We recruited 25,946 individuals attending premarital screening from 42 districts and counties in all 14 cities of Hunan Province. Hematological screening was performed, and molecular parameters were assessed.
RESULTS:
The overall carrier rate of thalassemia was 7.1%, including 4.83% for α-thalassemia, 2.15% for β-thalassemia, and 0.12% for both α- and β-thalassemia. The highest carrier rate of thalassemia was in Yongzhou (14.57%). The most abundant genotype of α-thalassemia and β-thalassemia was -α 3.7/αα (50.23%) and β IVS-II-654/β N (28.23%), respectively. Four α-globin mutations [CD108 (ACC>AAC), CAP +29 (G>C), Hb Agrinio and Hb Cervantes] and six β-globin mutations [CAP +8 (C>T), IVS-II-848 (C>T), -56 (G>C), beta nt-77 (G>C), codon 20/21 (-TGGA) and Hb Knossos] had not previously been identified in China. Furthermore, this study provides the first report of the carrier rates of abnormal hemoglobin variants and α-globin triplication in Hunan Province, which were 0.49% and 1.99%, respectively.
CONCLUSION
Our study demonstrates the high complexity and diversity of thalassemia gene mutations in the Hunan population. The results should facilitate genetic counselling and the prevention of severe thalassemia in this region.
Humans
;
beta-Thalassemia/genetics*
;
alpha-Thalassemia/genetics*
;
Hemoglobinopathies/genetics*
;
China/epidemiology*
;
High-Throughput Nucleotide Sequencing
6.Development of an Active Mechanical Lung for Simulating Human Pulmonary Ventilation.
Yueyang YUAN ; Lei HU ; Zhongkun XIAO ; Tianle ZHOU ; Feng YAO ; Jiaqi CHEN
Chinese Journal of Medical Instrumentation 2023;47(3):264-267
At present, the passive simulated lung including the splint lung is an important device for hospitals and manufacturers in testing the functions of a respirator. However, the human respiration simulated by this passive simulated lung is quite different from the actual respiration. And it is not able to simulate the spontaneous breathing. Therefore, including" the device simulating respiratory muscle work "," the simulated thorax" and" the simulated airway", an active mechanical lung to simulate human pulmonary ventilation was designed:3D printed human respiratory tract was developed and connected the left and right air bags at the end of the respiratory tract to simulate the left and right lungs of the human body. By controlling a motor running to drive the crank and rod to move a piston back and forth, and to deliver an alternating pressure in the simulated pleural, and so as to generate an active respiratory airflow in airway. The experimental respiratory airflow and pressure from the active mechanical lung developed in this study are consistent with the target airflow and pressure which collected from the normal adult. The developed active mechanical lung function will be conducive to improve the quality of the respirator.
Adult
;
Humans
;
Lung/physiology*
;
Respiration
;
Pulmonary Ventilation
;
Respiration, Artificial
;
Ventilators, Mechanical
7.Development of Index System for Assessing Parent s Ability on Child Injury Prevention by Delphi consultation
YIN Xiaoya, CHEN Bohao, ZHU Ying, LI Yiyang, TANG Biaoqian, YAO Shuxian, LIU Hanqing, WANG Shumei
Chinese Journal of School Health 2022;43(7):1086-1089
Objective:
To construct and determine the weight of Index System for Assessing Parent s Ability on Child Injury Prevention, and to provide the basis for childhood injury intervention in family.
Methods:
Twenty four experts majored in related fields were invited to participate in Delphi consultation. The final index system was constructed according to the consulting results and the weight of primary and secondary indicators were calculated.
Results:
The final index system consisted of 5 subscales corresponding to 5 age groups: 0,1-2,3-5,6-11 and 12-17 years old. Each scale included 4 primary indicators and 11 secondary indicators. The weight of primary indicators obtained by analytic hierarchy process is 0.28 for "environment", 0.16 for "product", 0.31 for "behaviors and skills", and 0.25 for "psychology". The highest weight of secondary indicators for "environment", "product" and "behaviors and skills" was "water area", while the top secondary indicators for "psychology" included "parental style""emotional control" "family atmosphere", with all indicators weighted higher than 0.2.
Conclusion
The Index System for Assessing Parent s Ability on Child Injury Prevention by Delphi consultation is comprehensive in content, and with the focus on parental behaviors and skills on injury prevention.
8.Child injury prevention practice among parents of primary school students
YIN Xiaoya, CHEN Bohao, ZHU Ying, LI Yiyang, TANG Biaoqian, YAO Shuxian, LIU Hanqing, WANG Shumei
Chinese Journal of School Health 2022;43(9):1337-1341
Objective:
To investigate child injury prevention practice and associated factors among parents of primary school students.
Methods:
Parents of 2 577 students were selected from three primary schools in three administrative regions of Shanghai by multi stage sampling method between May and June in 2021. Questionnaire survey was administered to parents based on the Index System for Assessing Parent s Ability on Child Injury Prevention, which was developed previously by the present research group. Results were converted into standardized scores for descriptive analysis, and the original scores were analyzed by multiple linear regression model.
Results:
The standardized scores of parents on environment safety, product safety, behaviors and skills and psychological safety were (0.91±0.08)(0.93±0.08)(0.97±0.04)(0.95±0.05), respectively. The standardized score of general ability was (0.95±0.04). The standardized scores on knowledge, attitude and practice of injury prevention were (0.99±0.03)( 0.97± 0.05)(0.89±0.10), respectively. Mothers performances were generally better than fathers . Parents with higher education performed better than those with lower education. Parents with "being a parent" in mind performed better on child injury prevention.
Conclusion
There is a gap between practice with the knowledge as well as attitude towards child injury prevention among parents of primary school students. Parenting role, educational background and parental awareness of the importance of parental role are primary factors that affect child injury prevention practice.
9.Comparative effectiveness research on small IT knife pre-cut and conventional guidewire cannulation on selective biliary intubation (with video)
Yonghua SHEN ; Qibin HE ; Yi WANG ; Ruhua ZHENG ; Wen LI ; Yuling YAO ; Jun CAO ; Yiyang ZHANG ; Lei WANG ; Xiaoping ZOU
Chinese Journal of Digestive Endoscopy 2021;38(1):48-51
Objective:To evaluate the application value of small IT knife pre-cut in assistance to duodenal papillary cannulation compared with conventional guidewire cannulation.Methods:A retrospective analysis was performed on the data of 90 patients with choledocholithiasis including 52 patients with small IT knife pre-cut assisted intubation (small IT knife group) and 38 patients with conventional guidewire intubation (conventional group) in endoscopic retrograde cholangiopancreatography (ERCP) from May 2016 to July 2019 in the digestive endoscopy center of Nanjing Drum Tower Hospital. The basic data, curative effect and complications of the two groups were collected and compared.Results:There was statistically significant difference in gender composition between the small IT knife group and the conventional group ( χ2=5.679, P=0.017), but no significant difference in other baseline data between the two groups (all P>0.05). The median intubation time of the small IT knife group was significantly shorter than that of the conventional group (141.5 s VS 270.0 s, Z=1 268.0, P=0.022). There were no significant differences in the success rate of intubation [98.1% (51/52) VS 94.7% (36/38), χ2=0.760, P=0.571], the incidence of intraoperative bleeding [15.4% (8/52) VS 7.9% (3/38), χ2=1.148, P=0.345], postoperative pancreatitis [5.8% (3/52) VS 7.9% (3/38), χ2=0.159, P=0.694], and postoperative cholangitis [1.9% (1/52) VS 5.3% (2/38), χ2=0.760, P=0.571] between the two groups. No perforation occurred in the two groups. After stratifying according to the operator′s proficiency, the median intubation time was significantly different between the small IT knife expert group and the conventional expert group (116.0 s VS 258.0 s, Z=276.0, P=0.038), while there was no significant difference in the intubation time among other groups (all P>0.05). Conclusion:The small IT knife is safe and effective to pre-cut and assist intubation in ERCP, and it may shorten the intubation time.
10.The initial experience of three-dimensional uniportal video-assisted thoracic surgery for the sleeve resection
Yiyang WANG ; Zhexin WANG ; Liang CHEN ; Haitang YANG ; Chenxi ZHONG ; Wentao FANG ; Heng ZHAO ; Feng YAO
Chinese Journal of Thoracic and Cardiovascular Surgery 2020;36(9):528-532
Objective:To discuss the safety and feasibility for the use of 3D uniportal VATS sleeve resection.Methods:Totally 32 patients with central lung cancer received 3D uniportal VATS sleeve resection(group A) from June 2017 to May 2020 at Shanghai Chest Hospital. Meanwhile, 63 patients received conventional VATS sleeve resection(group B). The clinicopathological and perioperative outcome data were retrospectively collected and analyzed.Results:The baseline clinicopathological characteristics between these two groups were statistically similar. Compared with group B, the mean operative time[(174.19±73.69)min vs.(212.46±50.02)min, P=0.004] and blood loss[(73.13±42.70)ml vs.(130.48±133.72)ml, P=0.020] of group A were decreased, harvested lymph node stations was increased(7.63±1.59 vs. 6.76±1.70, P=0.018). Lymph nodes dissected showed no statistical difference(1.31±1.58 vs 1.21±1.96, P=0.803). There was no intraoperative death in both groups. Inspiringly, group A possessed lower rate of conversion to thoracotomy(0 vs. 36.5%, P=0.000), shorter chest drainage durations[(4.88±1.15)days vs.(6.81±3.8)days, P=0.007]. Although there were no deaths during hospitalization in both groups, the incidence of postoperative complications in group A was significantly lower than that in group B(25.0% vs. 47.6%, P=0.046). It also presented more complicated operations including pulmonary artery plasty(25.0% vs. 6.3%, P=0.024) and carina plasty(12.5% vs. 1.6%, P=0.005) against group B. Conclusion:3D uniportal VATS was a safe and feasible technique for the surgical treatment of central lung cancer when conducting a thoracoscopic sleeve resection.


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