简介：AbstractFamily integrated care (FICare) is a collaborative model of neonatal care which aims to address the negative impacts of the neonatal intensive care unit (NICU) environment by involving parents as equal partners, minimizing separation, and supporting parent-infant closeness. FICare incorporates psychological, educational, communication, and environmental strategies to support parents to cope with the NICU environment and to prepare them to be able to emotionally, cognitively, and physically care for their infant. FICare has been associated with improved infant feeding, growth, and parent wellbeing and self-efficacy; important mediators for long-term improved infant neurodevelopmental and behavioural outcomes. FICare implementation requires multi-disciplinary commitment, staff motivation, and sufficient time for preparation and readiness for change as professionals relinquish power and control to instead develop collaborative partnerships with parents. Successful FICare implementation and culture change have been applied by neonatal teams internationally, using practical approaches suited to their local environments. Strategies such as parent and staff meetings and relational communication help to break down barriers to change by providing space for the co-creation of knowledge, the negotiation of caregiving roles and the development of trusting relationships. The COVID-19 pandemic highlighted the vulnerability within programs supporting parental presence in neonatal units and the profound impacts of parent-infant separation. New technologies and digital innovations can help to mitigate these challenges, and support renewed efforts to embed FICare philosophy and practice in neonatal care during the COVID-19 recovery and beyond.

简介：AbstractObjective:This study was to supply information of the Duchenne muscular dystrophy (DMD) mutational spectrum in 303 Chinese families and further offer 5-year clinical experience of DMD/Becker muscular dystrophy genetic counseling and prenatal diagnosis.Methods:In this retrospective cohort study, three hundred and five pregnancies in 303 pregnant women who has a birth history of DMD/Becker muscular dystrophy patients underwent prenatal diagnosis using multiplex ligation-dependent probe amplification followed by Sanger sequencing between January 2014 and December 2018 at Peking Union Medical College Hospital. The mean age of pregnant women was (33.0 ± 4.1) years old. Karyotype analysis was performed to exclude fetal abnormal karyotype.Results:The detection rate of DMD gene mutation in 303 probands was (296/303) 97.7% with seven families having a negative genetic diagnosis. The mutational spectrum comprised of large arrangements in 288/303 (95.0%) and small mutations in 8/303 (2.6%). Carrier testing was performed among 204 pregnant women among whom, 108 mothers had the same mutation as family proband. Of the 305 pregnancies underwent prenatal diagnosis, 55 of 173 male fetuses were affected. We also performed karyotype analysis and found three abnormal karyotypes of trisomy 21. We even found a fetus with DMD gene mutation and trisomy 21 in a same fetus by further analysis. We also identified two times of germline mosaicism.Conclusion:This study demonstrated the distribution and mutation profile of 303 probands and 305 fetuses. Furthermore, considering the possbility of maternl germilne mosaicism, prenatal diagnosis should be suggested to mothers with a proband whether they carry the causative mutation in their blood or not.

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简介：AbstractImportance:Pediatric palliative care (PPC) is an interdisciplinary collaboration that focuses on the prevention and relief of patient suffering. PPC has emerged as a critical field of medical expertise and practice. However, no information is available regarding the progress of PPC in the Chinese mainland.Objective:This study investigated the geographic distribution, team structure, and services of PPC teams in the Chinese mainland. It also investigated the level of understanding and implementation among pediatric oncologists regarding PPC.Methods:The PPC subspecialty group of the Pediatrics Society of the Chinese Medical Association included 45 PPC teams. The team structure and services were investigated using questionnaires mailed to the team leader of each PPC team. In addition, we sent questionnaires regarding the level of PPC understanding and implementation of PPC practices to 170 pediatric oncologists in 11 hospitals.Results:The geographical distribution of PPC teams is uneven in China. Most PPC teams are concentrated in the eastern provincial capital of China. Most PPC teams had limited staff and services. The level of PPC understanding was considerably limited across all demographics; most pediatric oncologists reported "some understanding" (n =71, 41.8%) or "poor understanding" (n = 50, 29.4%). Only 62.9% of pediatric oncologists had experience providing advice to family members regarding PPC matters.Interpretation:China is currently experiencing a critical shortage of PPC resources. Most pediatric oncologists had a limited understanding of PPC and reported limited practical implementation of PPC, which leads to underutilization of PPC resources.

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简介：AbstractIn 2009, China strengthened its public health service system. Since then, the country has made remarkable achievements in community-based chronic disease prevention and control; however, certain groups still have unmet needs. During 2019 to 2029, China will consolidate the top-level design of its medical health system. During this period, the coordination of department policies, improvement of service delivery mechanisms, building an integrated health service system, and other issues will be highlighted. This study will provide a basis for designing China's chronic disease prevention and control system during the next stage of development. We will consider the unmet needs of patients with chronic diseases as an indicator for remodeling the prediction system in combination with the elements and structural theories of complex health systems. In this article, we first introduce the definition and measurement methods of unmet needs. Second, we identify the existing unmet needs found among patients with chronic diseases with reference to the chronic disease prevention and control policies of China as well as current service items. Finally, we propose the design of community chronic disease service package for the next development stage based on unmet needs of patients with chronic diseases. We also provide suggestions for how to improve China's chronic care delivery system.

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简介：AbstractBackground:The burden of human immunodeficiency virus (HIV) infection in people who use drugs (PWUD) is significant. We aimed to screen HIV infection among PWUD and describe their retention in HIV care. Besides, we also screen for hepatitis C virus (HCV) infection among HIV-seropositive PWUD and describe their linkage to care.Methods:We conducted a prospective study in 529 PWUD who visited the "Cañada Real Galiana" (Madrid, Spain). The study period was from June 1, 2017, to May 31, 2018. HIV diagnosis was performed with a rapid antibody screening test at the point-of-care (POC) and HCV diagnosis with immunoassay and PCR tests on dried blood spot (DBS) in a central laboratory. Positive PWUD were referred to the hospital. We used the Chi-square or Fisher’s exact tests, as appropriate, to compare rates between groups.Results:Thirty-five (6.6%) participants were positive HIV antibodies, but 34 reported previous HIV diagnoses, and 27 (76%) had prior antiretroviral therapy. Among patients with a positive HIV antibody test, we also found a higher prevalence of homeless (P < 0.001) and injection drug use (PWID) (P < 0.001), and more decades of drug use (P= 0.002). All participants received HIV test results at the POC. Of the 35 HIV positives, 28 (80%) were retained in HIV medical care at the end of the HIV screening study (2018), and only 22 (62.9%) at the end of 2020. Moreover, 12/35 (34.3%) were positive for the HCV RNA test. Of the latter, 10/12 (83.3%) were contacted to deliver the HCV results test (delivery time of 19 days), 5/12 (41.7%) had an appointment and were attended at the hospital and started HCV therapy, and only 4/12 (33.3%) cleared HCV.Conclusions:We found almost no new HIV-infected PWUD, but their cascade of HIV care was low and remains a challenge in this population at risk. The high frequency of active hepatitis C in HIV-infected PWUD reflects the need for HCV screening and reinforcing the link to care.

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简介：AbstractBackground:Despite progress towards End TB Strategy targets for reducing tuberculosis (TB) incidence and deaths by 2035, South Africa remains among the top ten high-burden tuberculosis countries globally. A large challenge lies in how policies to improve detection, diagnosis and treatment completion interact with social and structural drivers of TB. Detailed understanding and theoretical development of the contextual determinants of problems in TB care is required for developing effective interventions. This article reports findings from the pre-implementation phase of a study of TB care in South Africa, contributing to HeAlth System StrEngThening in Sub-Saharan Africa (ASSET)—a five-year research programme developing and evaluating health system strengthening interventions in sub-Saharan Africa. The study aimed to develop hypothetical propositions regarding contextual determinants of problems in TB care to inform intervention development to reduce TB deaths and incidence whilst ensuring the delivery of quality integrated, person-centred care.Methods:Theory-building case study design using the Context and Implementation of Complex Interventions (CICI) framework to identify contextual determinants of problems in TB care. Between February and November 2019, we used mixed methods in six public-sector primary healthcare facilities and one public-sector hospital serving impoverished urban and rural communities in the Amajuba District of KwaZulu-Natal Province, South Africa. Qualitative data included stakeholder interviews, observations and documentary analysis. Quantitative data included routine data on sputum testing and TB deaths. Data were inductively analysed and mapped onto the seven CICI contextual domains.Results:Delayed diagnosis was caused by interactions between fragmented healthcare provision; limited resources; verticalised care; poor TB screening, sputum collection and record-keeping. One nurse responsible for TB care, with limited integration of TB with other conditions, and policy focused on treatment adherence contributed to staff stress and limited consideration of patients’ psychosocial needs. Patients were lost to follow up due to discontinuity of information, poverty, employment restrictions and limited support for treatment side-effects. Infection control measures appeared to be compromised by efforts to integrate care.Conclusions:Delayed diagnosis, limited psychosocial support for patients and staff, patients lost to follow-up and inadequate infection control are caused by an interaction between multiple interacting contextual determinants. TB policy needs to resolve tensions between treating TB as epidemic and individually-experienced social problem, supporting interventions which strengthen case detection, infection control and treatment, and also promote person-centred support for healthcare professionals and patients.

简介：AbstractPurpose:It is a challenge for the primary hospitals to manage multiple trauma patients. In this article, we explored the advantage of establishing a surgical intensive care unit (SICU) predominant by cardiothoracic surgeons in the early management of multiple trauma.Methods:This was a retrospective study and patients with multiple trauma in our hospital were collected and divided into two groups, based on time period and treat modes: group A (retrospective observation group) where patients were treated with the traditional treatment mode from January 2017 to December 2017 and group B (study group) where patients were treated in the SICU predominant by cardiothoracic surgeons from January 2018 to December 2018. Clinical data including demographics, injury severity score (ISS), causes of injury, time intervals from reception to entering SICU or operating room and mortality three days after injuries were collected. Data were analyzed by SPSS 20.0 software. Categorical variables were presented as number and/or frequency and continuous variables as mean ± SD.Results:Altogether 406 patients were included in this study, including 217 patients in group A and 189 patients in group B. General data between the two groups revealed no significant difference: mean age (years) (35.51 ± 12.97 vs. 33.62 ± 13.61, p = 0.631), gender distribution (mean/female, 130/87 vs. 116/73, p = 0.589) and ISS (15.92 ± 7.95 vs. 16.16 ± 6.89, p = 0.698). Fall from height were the dominant mechanism of injury, with 135 cases in group A (71.4%) and 121 cases in group B (55.8%), followed by traffic accidents. Injury mechanism showed no significant differences between two groups (p = 1.256). Introduction of the SICU significantly improved the care of trauma patients, regarding speed and mortality. Time intervals between reception and entering SICU or operating room was (108.23 ± 6.72) min and (45.67 ± 7.96) min in group A and B, respectively (p = 0.001). Mortality three days after injuries was 13.89% and 5.53% in group A and B, respectively (p = 0.005).Conclusion:Establishing a SICU predominant by cardiothoracic surgeons can reduce the early mortality rates in multiple trauma patients.

简介：AbstractBackground:One inevitable shortcoming of non-invasive prenatal screening (NIPS)/cell-free DNA (cfDNA) sequencing is the uninterpretable ( "no-call" ) result, which is mainly caused by an insufficient fetal fraction. This study was performed to investigate the factors associated with a successful second NIPS in these cases and determine the optimal management for women with initial no-call results.Methods:We retrospectively analyzed the data of women who underwent NIPS with initial no-call results due to an insufficient fetal fraction from 2017 to 2019 in our center. We compared these women’s maternal and pregnancy information with the data of women who had attained a successful second NIPS result and women who had received no-call results for a second time.Results:Among the 33,684 women who underwent NIPS, 137 with a no-call result underwent a retest. Comparison between the 87 (63.50%) women with a successful retest and the other 50 (36.50%) women showed a significant difference in both the initial fetal fraction and maternal body mass index (BMI), whereas the other factors showed no significant differences. In addition, with an initial fetal fraction of < 2.00%, the retest success rate was very limited.Conclusions:We identified two major factors associated with a successful NIPS retest: the initial fetal fraction and the maternal BMI. These findings suggest the need for specialized management for this subset of women and would be instructional for the counseling for these women.

简介：AbstractObjective:This survey was designed to understand the misconceptions about labor epidurals.Methods:This voluntary and anonymous online survey on wenjuan.com was conducted from September 1st, 2015 to January 1st, 2016 via mainly WeChat groups dedicated to perinatal healthcare providers in China. The questionnaire included items inquiring the knowledge and opinions about labor epidural analgesia related to maternal complications, baby safety, and effect on laboring. Incomplete surveys were excluded from the data analysis. The data was presented as percentages and a Chi-square test or Fisher’s exact test, as appreciate, was used to quantitatively compare the results.Results:A total of 1412 respondents completed surveys with 42.9% (606/1412) of them being anesthesiologists, 35.1% (495/1412) being obstetricians, 11.8% (167/1412) being midwives, 3.7% (52/1412) being labor and delivery nurses, and 6.5% (92/1412) being hospital administrators and unspecified. The study revealed a lack of knowledge in labor pain control. Although 82.4% (1164/1412) of respondents were familiar with labor epidural analgesia, 8.9% (126/1412) did not know how it works, and 1.1% (15/1412) never heard it in a multiple-choice question. The three main groups (anesthesiologists, obstetricians, and midwives/labor and delivery nurses) were chosen for comparisons. Opinions among these three groups concerning five questions in the three main concerns were evaluated using a statistical significance of P<0.05.Conclusion:The results in our survey indicated an urgent need of continuing medical education to multidisciplinary specialties to improve evidence-based medical practices as these misconceptions have existed for over 10 years in the medical professionals. Lack of public awareness fueled by misconceptions related to labor epidural analgesia may be associated with a lack of professional knowledge. Correct knowledge in professionals needs to be disseminated to the public in order to dispel possible misconceptions and rumors about labor epidural analgesia. This would not only enhance patient understanding of their care but also improve maternal, fetal, and neonatal outcomes.

简介：AbstractBackground:Zoonotic schistosomiasis, caused by Schistosoma japonicum, remains a major public health problem in the Philippines. This study aimed to evaluate the commercially available rapid diagnostic point-of-care circulating cathodic antigen (POC-CCA) test in detecting individuals infected with S. japonicum in a human cohort from an endemic area for schistosomiasis japonica in the Philippines.Methods:Clinical samples were collectedin 18 barangays endemic for S. japonicum infection in Laoang and Palapag municipalities, Northern Samar, the Philippines, in 2015. The presence of CCA in filter-concentrated urine samples (n = 412) was evaluated using the commercial kits and the results were converted to images, which were further analyzed by ImageJ software to calculate R values. The diagnostic performance of the immunochromatographic POC-CCA test was compared using the Kato-Katz (KK) procedure, in-house enzyme-linked immunosorbent assays (ELISAs) and droplet digital (dd) PCR assays as reference.Results:The POC-CCA test was able to detect S. japonicum-infected individuals in the cohort with an eggs per gram of faeces (EPG) more than or equal to 10 with sensitivity/specificity values of 63.3%/93.3%. However, the assay showed an inability to diagnose schistosomiasis japonica infections in all cohort KK-positive individuals, of which the majority had an extremely low egg burden (EPG: 1-9). The prevalence of S. japonicum infection in the total cohort determined by the POC-CCA test was 12.4%, only half of that determined by the KK method (26.2%). When compared with the ELISAs and ddPCR assays as a reference, the POC-CCA assay was further shown to be a test with low sensitivity. Nevertheless, the assay exhibited significant positive correlations with egg burden determined by the KK technique and the target gene copy number index values determined by the ddPCR assays within the entire cohort.Conclusions:By using in silico image analysis, the POC-CCA cassette test could be converted to a quantitative assay to avoid reader-variability. Because of its low sensitivity, the commercially available POC-CCA assay had limited potential for determining the status of a S. japonicum infection in the target cohort. The assay should be applied with caution in populations where schistosome parasites (especially S. japonicum) are present at low infection intensity.

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