Shared decision-making in genetic counseling: A scoping review

Abstract: Background: It is challenging to make informed decision in genetic counseling. Shared decision-making provides a chance in balancing the information and preferences between counselors and counselees. However, the status and prescriptions of shared decision-making have not been extensively studied in genetic counseling. Aim: To develop an up-to-date literature review of the shared decision-making in genetic counseling, identify knowledge gaps, and provide inspiration and suggestions for the development and practice of genetic counseling. Methods: "Genetic Counseling" and "Shared decision-making" were used to search in PubMed, Web of Science, Embase, Wanfang, CNKI and CBM databases. The search deadline was March 26, 2021. Results: A total of 22 articles were included, and four themes were identified: how people involved in genetic counseling, different stakeholders involved in SDM, multiple facilitators and barriers to SDM and the effectiveness of SDM in genetic counseling. Conclusion: Each participant needs to recognize their boundaries and make the best effort to involve in the shared decision-making. In the future, multinational studies should be considered for bringing shared decision-making to the global scale and well-designed studies are required to explore the long-term impact of shared decision-making in genetic counseling.

Resumen: Antecedentes: Es un reto tomar una decisión informada en el asesoramiento genético. La toma de decisiones compartida ofrece una oportunidad para equilibrar la información y las preferencias entre los asesores y los pacientes. Sin embargo, el estado y las prescripciones de la toma de decisiones compartida no se han estudiado ampliamente en el asesoramiento genético. Objetivo: Desarrollar una revisión bibliográfica actualizada de la toma de decisiones compartida en el asesoramiento genético, identificar las lagunas de conocimiento y proporcionar inspiración y sugerencias para el desarrollo y la práctica del asesoramiento genético. Métodos: "Genetic Counseling" y "Shared decision-making" se utilizaron para buscar en las bases de datos PubMed, Web of Science, Embase, Wanfang, CNKI y CBM. La fecha límite de búsqueda fue el 26 de marzo de 2021. Resultados: Se incluyó un total de 22 artículos y se identificó cuatro temas: cómo se involucran las personas en el asesoramiento genético, las diferentes partes interesadas involucradas en la GDS, los múltiples facilitadores y barreras para la GDS y la efectividad de la GDS en el asesoramiento genético. Conclusión: Cada participante necesita reconocer sus límites y hacer el mejor esfuerzo para involucrarse en la toma de decisiones compartida. En el futuro, se debe considerar la realización de estudios multinacionales para llevar la toma de decisiones compartida a la escala global y se requieren estudios bien diseñados para explorar el impacto a largo plazo de la toma de decisiones compartida en el asesoramiento genético.

Resumo Antecedentes: Tomar uma decisão informada em aconselhamento genético é um desafio. A tomada de decisão compartilhada (SDM) fornece uma oportunidade para contrabalançar a informação e preferências entre conselheiros e aconselhados. Entretanto, o status e prescrições da tomada de decisão compartilhada não têm sido extensivamente estudados em aconselhamento genético. Objetivo: Desenvolver uma revisão de literatura atualizada sobre a tomada de decisão compartilhada em aconselhamento genético, identificar lacunas no conhecimento e fornecer inspiração e sugestões para o desenvolvimento e prática do aconselhamento genético. Métodos: "Genetic Counseling" e "Shared decision-making" foram usados para pesquisar nos bancos de dados PubMed, Web of Science, Embase, Wanfang, CNKI e CBM. A data limite para a pesquisa foi 26 de março de 2021. Resultados: Um total de 22 artigos foram incluídos e quatro temas foram identificados: como pessoas se envolveram em aconselhamento genético, diferentes interessados envolvidos em SDM, facilitadores e barreiras múltiplas à SDM e efetividade da SDM em aconselhamento genético. Conclusão: Cada participante necessita reconhecer seus limites e fazer os melhores esforços para se envolver em tomada de decisão compartilhada. No futuro, estudos multinacionais devem ser considerados para trazer a tomada de decisão compartilhada a uma escala global e estudos bem desenhados são requeridos para explorar o impacto a longo prazo da tomada de decisão compartilhada em aconselhamento genético.

Inhibitory Effect of Interference with PD-L1 Expression on B-cell lymphoma in Mice / 中国实验血液学杂志

OBJECTIVE@#To investigate the potential inhibitory effect of interference with PD-L1 on B cell lymphoma in mice.@*METHODS@#Three shRNA vectors for mouse CD274 (PD-L1) were constructed and transiently transfected into 293T cells. RT-qPCR was used to validate the interference efficiency of CD274. The shRNA vector that interfere efficiently with CD274 expression was packaged by using lentivirus packaging system to generate shRNA lentivirus, and then transfected into A20 lymphoma cell line. The methyl thiazol terazolium (MTT) assay was used to detect proliferation after 48 h culture of CD274-sh A20 cells. Meanwhile, BALB/c mice were hypodermically infected with CD274-sh A20 cells. Infected mice were observed daily and assessed to visualize tumor by in vivo fluorescence imaging.@*RESULTS@#The proliferation rate of CD274-sh A20 cells in vitro was significantly lower than that of A20 cells (P<0.05). The tumor size detected by in vivo fluorescence imaging showed a significant reduce in tumor bearing mice with CD274-sh compared with other tumor bearing mice. And the weight and size of tumor in CD274-sh group were also significantly reduced compared with other group (P<0.05). Moreover, the survival time of tumor bearing mice in CD274-sh group was longer than that of the PD-L1 high expression group.@*CONCLUSION@#PD-L1 plays an important role in the incidence and the progression of lymphoma, and the shRNA-based PD-L1 knockdown can inhibit cell proliferation of A20 cells and partly suppress tumor growth.

Rsearch progress on ingested foreign bodies in children / 中国小儿急救医学

Foreign body ingestion refers to the object that can not be digested in the gastintestic tract and can not be discharged from the body in time.In children with foreign bodies ingestion, the clinical symptoms and signs are often lack of specificity, and the medical history is sometimes unclear.If the treatment is not timely, it will have a serious impact on the healthy growth of children, which can cause various complications, and even death.In this review, the epidemic characteristics, clinical symptoms, foreign body′s types, locations, examinations, treatment and prognosis were described.

The Relationship between the Expressions of CD33 and CD13 and the Prognosis of Patients with Multiple Myeloma / 中国实验血液学杂志

OBJECTIVE@#To investigate the expressions of CD33 and CD13 in newly diagnosed multiple myeloma (MM) patients and its relationship with prognosis.@*METHODS@#It was retrospectively observed that the expression of CD33 and CD13 in 121 MM patients who were newly diagnosed from January 2014 to January 2020, and the relationship between the expressions of CD33 and CD13 and patients prognosis was analyzed.@*RESULTS@#Among the 121 newly diagnosed MM patients, there were 30 patients (24.8%) in the CD33+ group and 12 patients (9.9%) in the CD13+ group. Kaplan-Meier analysis showed that, compared with the CD33- group, the progression-free survival (PFS) time and overall survival (OS) time were significantly shortened in MM patients in CD33+ group (PFS 17.5 vs 23 months, P=0.000; OS 18.5 vs 25 months, P=0.000); and the PFS time and OS time of MM patients in the CD13+ group were also significantly shortened than those in CD13- group (PFS 21 vs 22 months, P=0.012; OS 25 vs 26 months, P=0.006). Cox regression analysis showed that CD33 and CD13 were independent adverse prognostic factors in MM patients (CD33: P=0.000;CD13: P=0.003).@*CONCLUSION@#CD33 and CD13 are prognostic risk factors in patients with MM.

Upper gastrointestinal ulcer in children: a clinical analysis of 173 cases / 中国当代儿科杂志

OBJECTIVES@#To study the clinical manifestations and gastroscopic characteristics of upper gastrointestinal ulcer in children.@*METHODS@#A retrospective analysis was performed for the children who underwent gastroscopy and were found to have upper gastrointestinal ulcer for the first time at the Endoscopy Center of Shengjing Hospital, China Medical University, from January 2011 to May 2021. According to the cause of the disease, they were divided into primary ulcer group (primary group; n=148) and secondary ulcer group (secondary group; n=25). The clinical data were compared between the two groups.@*RESULTS@#A total of 173 children with upper gastrointestinal ulcer were enrolled, with a male/female ratio of 3.9:1. Compared with girls, boys had significantly higher proportions of duodenal ulcer and primary ulcer (P<0.05). Compared with the children aged below 6 years, the children aged 6-14 years had higher proportions of duodenal ulcer and primary ulcer and lower proportions of giant ulcer and multiple ulcers. Of the 148 children in the primary group, 95 (64.2%) had Helicobacter pylori infection. Abdominal pain was the most common clinical symptom and was observed in 101 children (68.2%). Duodenal ulcer was common and was observed in 115 children (77.7%), followed by gastric ulcer in 25 children (16.9%) and esophageal ulcer in 7 children (4.7%). Multiple ulcers were observed in 32 children (21.6%). Seventy children (47.3%) experienced complications, among which bleeding was the most common complication and was observed in 63 children (43.6%). Of the 25 children in the secondary group, abdominal pain was the most common clinical symptom and was observed in 9 children (36.0%), with a significantly lower incidence rate than the primary group (P<0.05); foreign body in the digestive tract was the most common cause of ulcer and was observed in 17 children (68%), followed by abdominal Henoch-Schönlein purpura in 5 children (20.0%) and Crohn's disease in 3 children (12.0%). The secondary group had a significantly higher proportion of multiple ulcer or giant ulcer than the primary group (P<0.05).@*CONCLUSIONS@#Upper gastrointestinal ulcer is more common in boys than girls, and duodenal ulcer and primary ulcer are more common in boys. Children aged 6-14 years often have duodenal ulcer and primary ulcer, and giant ulcer and multiple ulcers are relatively uncommon. Primary ulcer in children has a variety of clinical manifestations, mainly abdominal pain, and duodenal ulcer is relatively common, with bleeding as the main complication. The clinical symptoms and endoscopic manifestations of secondary ulcer are closely associated with the primary causes, and it is more likely to induce huge ulcers and multiple ulcers.

Head acupuncture combined with exercise therapy for nonspecific low back pain：a randomized controlled trial / 中国针灸

OBJECTIVE@#To compare the clinical effect between head acupuncture combined with exercise therapy and conventional acupuncture for nonspecific low back pain.@*METHODS@#A total of 64 patients with nonspecific low back pain were randomized into an observation group (32 cases, 2 cases dropped off) and a control group (32 cases, 2 cases dropped off). In the control group, conventional acupuncture was applied at Jiaji (EX-B 2) of L1 to L3, ashi point, Shenshu (BL 23), Dachangshu (BL 25), Yaoyangguan (GV 3) and Weizhong (BL 40). The observation group was treated with head acupuncture combined with exercise therapy, head acupuncture was applied at foot-motor-sensory area on the healthy side and Cuanzhu (BL 2), Tongziliao (GB 1) on the affected side, and McKenzie therapy was performed during retention. The needles were retained for 40 min, once a day, continuous treatment for 6 days with the interval of 1 day, 14 days were required in the two groups. Before and after treatment, the pain visual analogue scale (VAS) score, Oswestry disability index (ODI) score and infrared thermography temperature of pain area in the low back were compared in the two groups.@*RESULTS@#Compared before treatment, the VAS and ODI scores after treatment were decreased in the two groups (P<0.01), and those in the observation group were lower than the control group (P<0.01). Compared before treatment, the infrared thermography temperature of pain area in the low back after treatment was increased in the two groups (P<0.01), and that in the observation group was higher than the control group (P<0.01).@*CONCLUSION@#Head acupuncture combined with exercise therapy could relieve pain, improve dysfunction and increase the local temperature of pain area in patients with nonspecific low back pain, and its curative effect is better than conventional acupuncture.

Essence of SUN Shen-tian's clinical features on acupuncture and moxibustion / 中国针灸

To summarize SUN Shen-tian's treatment ideas and clinical features. SUN applies meridian syndrome differentiation to the diagnosis and treatment of diseases; advocates that prevention and treatment of diseases should be regulated mind firstly; applies transcranial repetitive acupuncture combined modern cerebral cortex function positioning; emphasizes the application of multiple acupuncture methods and manipulation, and includes the meridian penetrating needling method, the flat needling and penetrating needling method, and the stagnant needle lifting method, pays attention to the importance of achieving qi and manipulation for the effect.

Research progress on the antifungal mechanisms of antimicrobial peptides and its clinical applications / 中华检验医学杂志

In this review, the structure and biological characteristics of antimicrobial peptides were described, and the anti-fungal mechanisms related to membrane damage and non-membrane damage was discussed. The prospective clinical applications of antimicrobial peptides were introduced. Thus, the theoretical basis for the in-depth research on the anti-fungal mechanisms of antimicrobial peptides and the clinical development and application is provided.

Effective components of Shengxian Decoction and its mechanism of action in treating chronic heart failure based on UHPLC-Q-TOF-MS integrated with network pharmacology / 中国中药杂志

This study aimed to elucidate the effective components of Shengxian Decoction and its mechanism of action in treating chronic heart failure. Firstly, UHPLC-Q-TOF-MS was established to identify the main chemical constituents in the rat serum after intragastric administration with Shengxian Decoction. Secondly, the absorbed components in serum were then used for the network pharmacology analysis to infer the mechanism and effective components. Targets for constituents in serum were predicted at TCMSP and Swiss-TargetPrediction database. An association network map was drawn by network visualization software Cytoscape 3.6.1. Finally, GO enrichment analysis and KEGG pathway enrichment analysis were carried out for the core target genes. By UHPLC-Q-TOF-MS, 18 prototype compounds were definitely identified, including five compounds from Astragali Radix, four compounds from Anemarrhenae Rhizoma, four compounds from Bupleuri Radix, four compounds from Cimicifugae Rhizoma, and one compound from Platycodonis Radix. Those components of Shengxian Decoction were closely associated with 13 key protein targets, including inflammatory factors, like IL6, IL1 B, TNF, PTGS2, IL10; redox enzymes CAT, HMOX1, and MPO; cardiovascular targets, like VEGFA, NOS3, and NOS2; and transmememial proteins CAV1 and INS. Network pharmacology analysis showed that the 18 compounds could be responsible for the treatment of chronic heart failure by regulating HIF-1 signaling pathways, PI3 K-Akt signaling pathways, cGMP-PKG signaling pathways, cAMP signaling pathways and TNF signaling pathways. This study provided a scientific basis for mechanism and effective ingredients of Shengxian Decoction.

The analysis of clinical indexes in patients with nonalcoholic fatty liver disease combined with hypertension / 中国医师进修杂志

Objective:Non-alcoholic fatty liver disease (NAFLD) is not only a liver manifestation of metabolic syndrome, but also related to type 2 diabetes, dyslipidemia and hypertension closely. This study aims to explore the correlation between clinical and experimental indexes and disease occurrence in patients with NAFLD combined with essential hypertension.Methods:One hundred and thirty-four patients with NAFLD combined with essential hypertension and 98 patients in the control group were enrolled in this study from March 2019 to March 2021 in Dalian Central Hospital. The clinical baseline and test indexes of the two groups were compared and analyzed, and the logistic regression analysis was also performed.Results:The mean and median values of alanine aminotransferase, γ-glutamyl transpeptidase, lactate dehydrogenase and triacylglycerol in the experimental group were higher than those in the control group: 22 U/L vs. 17 U/L, 23 U/L vs. 17 U/L, 179 U/L vs. 173 U/L, 1.68 mmol/L vs. 1.45 mmol/L, while the mean and median values of homocysteine, albumin (ALB), creatinine and free triiodothyronine were lower than that in the control group: 11.2 μmol/L vs. 12.2 μmol/L, 41.5 g/L vs. 43.5 g/L, 54 μmol/L vs. 60 μmol/L, (4.657 ± 0.599) pmol/L vs. (4.850 ± 0.574) pmol/L ( P<0.05). Multivariate Logistic regression analysis showed that BMI, diabetes and ALB were independently correlated with NAFLD. Conclusions:The BMI and diabetes were independent risk factors for NAFLD in patients with essential hypertension, and ALB is an independent protective factor.

Analysis on Chemical Constituents in Xiao Chengqitang by UPLC-Q-Orbitrap-MS / 中国实验方剂学杂志

Objective:To rapidly identify the chemical constituents in Xiao Chengqitang by ultra-performance liquid chromatography-quadrupole-electrostatic field orbitrap high resolution mass spectrometry （UPLC-Q-Orbitrap-MS）. Method:The method was established by the Waters CORTECS T3 column （2.1 mm×150 mm， 1.6 μm）， mobile phase was methanol （A）-0.1% formic acid aqueous solution （B） for gradient elution （0-5 min， 3%-21%A； 5-20 min， 21%-36%A； 20-32 min， 36%-50%A； 32-42 min， 50%-62%A； 42-50 min， 62%-85%A； 50-60 min， 85%-95%A）， the flow rate was 0.2 mL·min^-1， and the column temperature was 30 ℃. UPLC-Q-Orbitrap-MS was operated in positive and negative ion modes， the scanning range was 100-1 200 with mode of Full MS/dd-MS²， and the collision energies were 20， 40 eV. The compounds were identified by comparing with reference substances and combining with literature reports and MS database information. Result:A total of 123 components were identified in Xiao Chengqitang， including 33 flavonoids， 25 anthraquinones and anthrones， 23 phenylpropanoids， 15 tannins， 10 nitrogen-containing components and 17 other components. Among them， 32 components were determined by reference substances. Conclusion:The material basis of Xiao Chengqitang is flavonoids， anthraquinones and anthrones， phenylpropanoids， which is derived from Aurantii Fructus Immaturus，<italic> </italic>Rhei Radix et Rhizoma and Magnoliae Officinalis Cortex， respectively.

Evaluation of Accessibility of Road Traffic Sidewalks Using the Codes for Accessibility Design in the Mega-city: a Case of Shanghai / 中国康复理论与实践

Objective:To evaluate the accessibility construction status of road traffic sidewalks in Shanghai. Methods:From July to September, 2019, 46 road traffic sidewalks in Shanghai were selected using a convenience sampling, and evaluation tools were designed based on the Codes for Accessibility Design (GB 50763-2012) and Standards for Design on Accessibility of Buildings and Facilities (DGJ08-103-2003). After field check and experience for the sidewalks, the compliance rates of evaluation dimensions and evaluation contents of sidewalks were analyzed using the descriptive analysis. The weights of each dimension were calculated using the principal component analysis to construct the sidewalk comprehensive barrier score model, and to compare the sidewalk comprehensive barrier scores in different areas of Shanghai. From September to November 2019, in-depth interviews were conducted with eleven persons with disabilities to understand the sidewalk barriers for them. Results:The overall compliance rate of sidewalk accessibility was 4.35%. Among the evaluated contents, 93.5% sidewalks had a curb ramp, 91.3% had a height difference between the ramp and the carriageway, 26.1% were not paved with tactile ground surface indicators; 71.7% tactile ground surface indicators were blocked by poles, etc., and 84.8% were occupied by obstacles. The warning indicator was the greatest weight among the evaluated dimensions. The barrier of sidewalks was high (36.7%) and medium (20.0%) in the central area, which was higher than that in the sub-central area (both 6.3%) (P < 0.05). There were many obstacles during the experience of sidewalks using, resulting in less using of the barrier-free facilities. Conclusion:Most of the sidewalks in Shanghai do not meet the standards of the Codes for Accessibility Design. It is urgent to construct and maintain the barrier-free facilities.

Effects of Flexi-bar on Nonspecific Low Back Pain / 中国康复理论与实践

Objective:To investigate the effects of Flexi-bar on nonspecific low back pain. Methods:From June, 2020 to January, 2021, 30 patients with nonspecific low back pain were enrolled. Firstly, all the patients performed core stabilization exercise (supine bridge, curl-up and four-point support) using Flexi-bar or not, respectively. And the difference of electromyography (EMG) root mean square (RMS) value of transversus abdominis and multifidus was observed. Secondly, they were randomly divided into control group (n = 15) and experimental group (n = 15). The control group performed core stabilization exercise, and the experimental group received Flexi-bar training in addition, 30 minutes a time, three times a week, for six weeks. They were evaluated with Visual Analogue Scale (VAS) and Oswestry Disability Index (ODI), and measured the thickness of transversus abdominis and the area of multifidus before and after training. Results:Firstly, there was significant difference in RMS of transversus abdominis and multifidus between using Flexi-bar or not (|t| > 2.468, P < 0.05), except the RMS of transversus in supine bridge (|t| < 2.029, P > 0.05). Secondly, before training, there was no significant difference between the control group and the experimental group (|t| < 1.944, P > 0.05); after training, the scores of VAS and ODI significantly decreased (|t| > 6.808, P < 0.001), the thickness of transversus abdominis and the area of multifidus significantly increased (|t| > 5.937, P < 0.001), and all the indexes were better in the experimental group than in the control group (|t| > 2.411, P < 0.05)， except the thickness of transverse abdominis (t = -1.431, P > 0.05). Conclusion:Flexi-bar could facilitate to reduce pain and improve the function of patients with nonspecific low back pain.

Coping Behaviors and Its Influential Factors for Caregivers of Children with Disabilities in Developed Areas in China / 中国康复理论与实践

Objective:To investigate the current status of coping behaviors among caregivers of children with disabilities in the context of rehabilitation and its influencing factors. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 358 caregivers (parents) of children with disabilities were surveyed in Shanghai. They were evaluated in the context of rehabilitation of children with disabilities with Coping Health Inventory for Parents (CHIP). Multiple linear stepwise regression analysis was used to explore the influencing factors. Results:The total score of CHIP was (106.00±23.45) and the average score of CHIP was (2.36±0.52). Among the caregiver factor, mothers (B = 7.607, 95%CI 2.477 to 12.737, P = 0.004), and caregivers who didn't need to care for others (B = 5.758, 95%CI 1.174 to 10.343, P = 0.014) reported higher CHIP score. Among the child factors, higher CHIP score was reported in caregivers who had more partners (B = 2.925, 95%CI 1.233 to 4.618, P < 0.001), participated in public space activities more frequently (B = 3.906, 95%CI 1.743 to 6.068, P < 0.001) and perceived changes in rehabilitation outcomes (B = -16.832, 95%CI -31.471 to -2.193, P = 0.024); CHIP score was lower in thoses of 3 to < 6 years old (B = -7.914, 95%CI -15.157 to -0.671, P = 0.032) and with intellectual disability children (B = -11.153, 95%CI -21.360 to -0.947, P = 0.032). Among the environmental factors, caregivers who perceived more friendly social attitude (B = 2.560, 95%CI 0.615 to 4.505, P = 0.010) reported higher CHIP score. Conclusion:It is proposed to learn the coping needs of caregivers of children with disabilities in the context of rehabilitation. The coping behaviors of caregivers are influenced by multiple factors, such as children's individual, caregivers and environment.

Depression and Its Influencing Factors of Caregivers for Children with Disabilities / 中国康复理论与实践

Objective:To investigate the depression status of caregivers of children with disabilities and analyze the influencing factors. Methods:From August to September, 2020, a one-to-one interview was conducted using a convenience sampling method to determine the depression status of 334 caregivers of children with disabilities in Shanghai. Patient Health Questionnaire 9 Item (PHQ-9) was used to evaluate the depression status. The data were analyzed with univariate analysis from three aspects: caregiver, care recipient and environment. Then, the statistically significant variables were included in a dichotomous logistic regression. Results:The depression rate of 334 caregivers of children with disabilities was 35.9%. Among the caregiver factors, female caregivers had a higher risk of depression than male (OR = 2.193, 95%CI 1.131 to 4.254, P = 0.002). Among the care recipient factors, poor sleep quality (OR = 1.942, 5%CI 1.113 to 3.386, P < 0.05), emotional instability (OR = 17.456, 95%CI 2.534 to 120.240, P < 0.05) and types of disability (ORintelligence = 5.401, 95%CI 1.995 to 14.624; ORmental = 3.712, 95%CI 1.615 to 8.530; ORphysical = 2.913, 95%CI 1.330 to 6.379; P < 0.05) were associated with the depression of caregivers. Among the environmental factors, caregivers in rented housing had a higher risk of depression than those in owner-occupied housing (OR = 1.727, 95%CI 1.135 to 2.627, P < 0.05). Conclusion:The depression status of caregivers of children with disabilities is not optimistic, with higher rates of reported depression among female caregivers, caregivers in rented housing; caregivers of children with intellectual, mental and physical disabilities, and poor sleep quality and emotional instability.

Anxiety and Its Influencing Factors of Caregivers for Children with Disabilities / 中国康复理论与实践

Objective:To investigate the anxiety state and its influencing factors for caregivers of children with disabilities. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 496 family caregivers of children with disabilities were surveyed in Shanghai. Crosstab was used to analyze the anxiety state and binary logistic regression analysis was used for identifying key factors. Results:There were 73.2% parents and 26.8% grandparents among 496 caregivers. Physical disabilities accounted most (26.0%) in the children. About 35.1% caregivers reported their anxiety state, and more than 10% reported moderate to severe anxiety. The results of logistic regression analysis showed that grandfather reported 0.318 times anxiety to mother (OR = 0.318, 95%CI 0.113 to 0.900, P = 0.031). Sleep problems (OR = 1.713, 95%CI 1.046 to 2.805, P = 0.032) and emotional functioning (ORgenerally = 0.057, 95%CI 0.009 to 0.340, P = 0.002; ORstable = 0.031, 95%CI 0.005 to 0.205, P < 0.001) of children were associated with the rate of caregiver-reported anxiety. Among family environment factors, monthly per capita household income (OR5000-< 10000 Yuan = 0.463, 95%CI 0.236 to 0.909, P = 0.025; OR≥ 10,000 Yuan = 0.325, 95%CI 0.160 to 0.660, P = 0.002) and housing status (OR = 0.356, 95%CI 0.208 to 0.608, P < 0.001) were associated with the rate of caregiver-reported anxiety. Among social environment factors, caregivers who were satisfied with current accessibility reported lower rate of anxiety (ORsatisfied = 0.136, 95%CI 0.031 to 0.602, P = 0.009). Conclusion:The anxiety state of caregivers of children with disabilities is higher than that of the general population. When caregivers are caring for a child with sleep problem or emotional issue, have low household income, or dissatisfied with the barrier-free environment, they may face higher risk of anxiety.

Quality of Life and It's Influencing Factors for Caregivers of Children with Disabilities / 中国康复理论与实践

Objective:To explore the quality of life of caregivers of children with disabilities and its influencing factors. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 496 family caregivers of children with disabilities were surveyed in Shanghai. The 12-item Short-form Health Survey (SF-12) was used to measure the quality of life of 496 caregivers, and multiple linear regression was performed to analyze the related factors. Results:The score of physical component summary (PCS) of caregivers was (51.67±8.11), and the score of mental component summary (MCS) was (42.10±12.66). The scores of PCS were lower in caregivers with children aged 6 to 18 years (B = -1.783, 95%CI -3.279 to -0.287, P = 0.020), children with emotional instability (B = 2.719, 95%CI 1.254 to 4.184, P < 0.001), female caregivers (B = -3.765, 95%CI -6.578 to -0.953, P = 0.009), and caregivers who were relatively dissatisfied with the policy (B = 1.973, 95%CI 0.367 to 3.578, P = 0.016); and were higher in caregivers with children with speech disabilities (B = 3.463, 95%CI 0.053 to 6.873, P = 0.047). The types of disabilities of children (Bhearing = 9.465, 95%CI 5.107 to 13.823, P < 0.001; Bundetermined = 5.999, 95%CI 1.558 to 10.441, P = 0.008), playmates of children (B = 2.626, 95%CI 0.352 to 4.901, P = 0.024), education level of caregivers (Bhigh middle school = -4.701, 95%CI -8.028 to -1.374, P = 0.006; Bhigh school = -3.610, 95%CI -6.604 to -0.615, P = 0.018), family size (B = 2.616, 95%CI 0.479 to 4.753, P = 0.017) and per capita monthly income (B < 5000 Yuan= -6.572, 95%CI -9.136 to -4.008, P < 0.001; B5000 to < 10000 Yuan = -4.932, 95%CI -7.544 to -2.319, P < 0.001) were associated with the scores of MCS. Conclusion:The quality of life, especially the mental health, of caregivers of children with disabilities is poor. The influencing factors cover multiple dimensions such as caregivers, children, family and social environment.

Nutritional Status of Children with Disabilities in Developed Areas in China: a Case of Shanghai / 中国康复理论与实践

Objective:To explore the nutritional status and influencing factors among children with disabilities in developed areas. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 480 caregivers of children with disabilities aged two to 18 years in Shanghai were investigated their heights and weights, and the body mass index (BMI) was calculated. The influencing factors were analyzed from the dimensions of children's personal, family and social characteristics based on the Ecological System Theory. Chi-square test and binary Logistic regression model were used to analyze the influencing factors associated with the nutritional status of children with disabilities. Results:The prevalence of thinness, overweight and obesity in 480 children was 23.75%, 13.54% and 13.33%, respectively. Multivariate Logistic regression analysis showed that potato intake (OR = 0.420, 95%CI 0.197 to 0.893, P < 0.05) and caregivers' perception of child's weight (OR underweight = 4.188, 95%CI 1.488 to 11.787, P < 0.01) were associated with children's thinness. Types of disability (OR autism= 0.142, 95%CI 0.034 to 0.591, P < 0.01), the role of caregiver (OR father= 5.519, 95%CI 1.110 to 27.440, P < 0.05), and caregivers' perception of the child's weight (OR overweight = 5.669, 95%CI 1.112 to 28.903, P < 0.05) were associated with children's overweight/obesity. Conclusion:The prevalence of malnutrition among children with disabilities in Shanghai is higher than those typically-developing, especially thinness and obesity. The nutritional status is greatly affected by the type of disability, dietary intake and family characteristics.

Quality of Life and Influencing Factors for Children with Disabilities in Developed Areas in China: a Case of Shanghai / 中国康复理论与实践

Objective:To explore the current status of the quality of life of children with disabilities and its influencing factors. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 285 family caregivers of children with disabilities were enrolled in Shanghai. The EuroQol-5 Dimension Questionnaire Youth Version (EQ-5D-Y) was used to measure the quality of life of 285 children with disabilities. The impact of individual factors, caregiver factors, and environmental factors (family factors and social factors) on children's quality of life were analyzed using multiple linear stepwise regression analysis. Results:The score of Visual Analog Scale (VAS) was (71.66±22.33). The quality of life were poorer for children with physical disabilities (B = -13.623, 95%CI -25.282 to -1.965, P = 0.022) or multiple disabilities (B = -14.911, 95%CI -27.445 to -2.377, P = 0.020), combined diseases (B = -8.995, 95%CI -14.780 to -3.210, P = 0.002), emotional instability (B = -4.414, 95%CI -7.433 to -1.395, P = 0.004), poor partnerships (B = 4.965, 95%CI 1.748 to 8.181, P = 0.003), no pre-school education (B = -7.757, 95%CI -12.954 to -2.561, P = 0.004) and grandparents as the main caregiver (B = -7.999, 95%CI -14.288 to -1.710, P = 0.013). Conclusion:The quality of life for children with disabilities is relatively poor and influenced by multiple factors such as children's individual, caregivers, and environment. The main influencing factors are individual factors and caregiver factors.

Current Situation Analysis of Care Support Needs in Children with Disabilities: from a Comprehensive Rehabilitation Perspective / 中国康复理论与实践

Objective:To investigate the care needs and influencing factors for caregivers of children with disabilities. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 496 family caregivers of children with disabilities were surveyed in Shanghai. The Care Needs Assessment Tool for Children with Disabilities was used to measure the care needs rates and satisfaction, and multiple linear regression was performed to analyze the related factors. Results:The rate of total need was 71.8%, which was high in the information support (83.7%), spiritual support (75.9%) and financial support (74.1%), and was at an intermediate level in alternative service support (62.9%) and professional support (62.2%). The satisfaction of total need was 39.4%, which was at a intermediate level in the spiritual support (50.8%) and professional support (45.5%), and was at a low level in alternative service support (32.8%), financial support (32.3%) and information support (30.3%). The caregivers needed less support for thoses with higher public policy satisfaction (B = -3.252, 95%CI -5.370 to -1.134, P = 0.003) and the children with vision and speech disability, and undetermined disability (Bvision disability= -12.160, 95%CI -21.976 to -2.344, P = 0.015; Bspeech disability= -12.754, 95%CI -22.583 to -2.925, P = 0.011; Bundetermined disability= -16.553, 95%CI -24.714 to -8.392, P < 0.001), while mothers (B = 9.071, 95%CI 4.293 to 13.848, P < 0.001) needed more support than grandparents. The caregivers with higher public policy satisfaction (B = 7.392, 95%CI 5.523 to 9.262, P < 0.001), the children with vision disability, hearing disability and speech disability (Bvision disability= 8.612, 95%CI 0.081 to 17.144, P = 0.048; Bhearing disability= 8.686, 95%CI 1.920 to 15.451, P=0.012; Bspeech disability= 9.515, 95%CI 1.184 to 17.846, P = 0.025), lower barriers to social inclusion (B = 1.932, 95%CI 0.457 to 3.408, P = 0.010) and shorter average daily care hours (B = -4.123, 95%CI -6.247 to -1.999, P < 0.001) were more satisfactory for support. Conclusion:The care needs of children with disabilities are diverse, with the highest rate of need for information support and the lowest level of satisfaction. There is some variation in the care needs of children with different types of disabilities, family roles, average daily care hours and social environment characteristics.