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1.
Orphanet J Rare Dis ; 19(1): 143, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38576038

RESUMO

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


Assuntos
Saúde Mental , Miastenia Gravis , Adulto , Humanos , Autoeficácia , Estudos Transversais , Adesão à Medicação/psicologia , Apoio Social , Miastenia Gravis/tratamento farmacológico , China , Inquéritos e Questionários
2.
BMC Surg ; 24(1): 53, 2024 Feb 14.
Artigo em Inglês | MEDLINE | ID: mdl-38355459

RESUMO

BACKGROUND: Breast cancer surgeries involving MS-TRAM/DIEP breast reconstruction has traditionally been collaborative efforts between breast surgeons and plastic surgeons. However, in our institution, this procedure is performed by dual-trained breast surgeons who are proficient in both breast surgery and MS-TRAM/DIEP breast reconstruction. This study aims to provide insights into the learning curve associated with this surgical approach. MATERIALS AND METHODS: We included eligible breast cancer patients who underwent MS-TRAM/DIEP breast reconstruction by dual-trained breast surgeons between 2015 and 2020 at our institution. We present the learning curve of this surgical approach, with a focus on determining factors affecting flap harvesting time, surgery time, and ischemic time. Additionally, we assessed the surgical complication rates. RESULTS: A total of 147 eligible patients were enrolled in this study. Notably, after 30 cases, a statistically significant reduction of 1.7 h in surgery time and 21 min in ischemic time was achieved, signifying the attainment of a plateau in the learning curve. And the major and minor complications were comparable between the early and after 30 cases. CONCLUSION: This study explores the learning curve and feasibility experienced by dual-trained breast surgeons in performing MS-TRAM/DIEP breast reconstruction. TRIAL REGISTRATION: NCT05560633.


Assuntos
Neoplasias da Mama , Mamoplastia , Cirurgiões , Humanos , Feminino , Curva de Aprendizado , Complicações Pós-Operatórias/etiologia , Mamoplastia/métodos , Neoplasias da Mama/cirurgia , Neoplasias da Mama/complicações , Estudos Retrospectivos
3.
Eur Radiol ; 34(3): 1774-1789, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37658888

RESUMO

OBJECTIVES: Accurate preoperative estimation of the risk of breast-conserving surgery (BCS) resection margin positivity would be beneficial to surgical planning. In this multicenter validation study, we developed an MRI-based radiomic model to predict the surgical margin status. METHODS: We retrospectively collected preoperative breast MRI of patients undergoing BCS from three hospitals (SYMH, n = 296; SYSUCC, n = 131; TSPH, n = 143). Radiomic-based model for risk prediction of the margin positivity was trained on the SYMH patients (7:3 ratio split for the training and testing cohorts), and externally validated in the SYSUCC and TSPH cohorts. The model was able to stratify patients into different subgroups with varied risk of margin positivity. Moreover, we used the immune-radiomic models and epithelial-mesenchymal transition (EMT) signature to infer the distribution patterns of immune cells and tumor cell EMT status under different marginal status. RESULTS: The AUCs of the radiomic-based model were 0.78 (0.66-0.90), 0.88 (0.79-0.96), and 0.76 (0.68-0.84) in the testing cohort and two external validation cohorts, respectively. The actual margin positivity rates ranged between 0-10% and 27.3-87.2% in low-risk and high-risk subgroups, respectively. Positive surgical margin was associated with higher levels of EMT and B cell infiltration in the tumor area, as well as the enrichment of B cells, immature dendritic cells, and neutrophil infiltration in the peritumoral area. CONCLUSIONS: This MRI-based predictive model can be used as a reliable tool to predict the risk of margin positivity of BCS. Tumor immune-microenvironment alteration was associated with surgical margin status. CLINICAL RELEVANCE STATEMENT: This study can assist the pre-operative planning of BCS. Further research on the tumor immune microenvironment of different resection margin states is expected to develop new margin evaluation indicators and decipher the internal mechanism. KEY POINTS: • The MRI-based radiomic prediction model (CSS model) incorporating features extracted from multiple sequences and segments could estimate the margin positivity risk of breast-conserving surgery. • The radiomic score of the CSS model allows risk stratification of patients undergoing breast-conserving surgery, which could assist in surgical planning. • With the help of MRI-based radiomics to estimate the components of the immune microenvironment, for the first time, it is found that the margin status of breast-conserving surgery is associated with the infiltration of immune cells in the microenvironment and the EMT status of breast tumor cells.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/diagnóstico por imagem , Neoplasias da Mama/cirurgia , Neoplasias da Mama/patologia , Mastectomia Segmentar , Margens de Excisão , Estudos Retrospectivos , Radiômica , Imageamento por Ressonância Magnética , Microambiente Tumoral
4.
PeerJ ; 11: e16247, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38025679

RESUMO

Objectives: We aimed to estimate the genotype distribution of persistent human papillomavirus (HPV) infection in females worldwide, and provided a scientific basis for the prevention strategies of cervical cancer (CC) and the development of HPV vaccines. Methods: Both English and Chinese databases were researched from the inception to July 2023. The pooled persistent HPV infection prevalence was calculated using a random effects model. The subgroup analysis was performed to explore the heterogeneity. Publication bias was evaluated using funnel plot, Egger's and Begg's test. Results: Twenty-eight studies with 27,335 participants were included. The pooled prevalence of persistent HPV infection was 29.37% (95% CI [24.05%∼35.31%]), and the genotypes with the persistent infection prevalence were HPV16 (35.01%), HPV52 (28.19%), HPV58 (27.06%), HPV18 (25.99%), HPV33 (24.37%), HPV31 (23.35%), HPV59 (21.87%), HPV39 (19.54%), HPV68 (16.61%) and HPV45 (15.05%). The prevalence of multiple and single HPV persistent infection were 48.66% and 36.71%, respectively; the prevalence of persistent HPV infection in different age groups (<30, 30∼39, 40∼49, >50) were 29.83%, 28.39%, 22.24% and 30.22%, respectively. The follow-up time was significantly associated with heterogeneity by subgroup analysis (P < 0.05), and the prevalence of persistent infection decreased with longer follow-up time. Conclusions: Multiple infections were more likely to occur persistent HPV infection than single infection. In addition to HPV vaccination, we should emphasize the follow-up management for women under 30 and over 50 years old, those with high-risk HPV infection (HPV59, 39, 68) and multiple infections.


Assuntos
Infecções por Papillomavirus , Feminino , Humanos , Pessoa de Meia-Idade , Infecções por Papillomavirus/epidemiologia , Papillomavirus Humano , Infecção Persistente , Papillomaviridae/genética
5.
Health Qual Life Outcomes ; 21(1): 67, 2023 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-37420281

RESUMO

OBJECTIVE: This study assesses the association between health-related quality of life (HRQoL) for pediatric patients with osteogenesis imperfecta (OI) and their caregivers' eHealth literacy (eHL), financial well-being, and mental health along with the impact of eHealth literacy on the financial well-being and mental health of OI caregivers. METHODS: Participants were recruited from a member pool of two OI patient organizations in China. Information about patients' HRQoL and their caregivers' eHL, financial well-being, and mental health was collected. Structure equation modeling (SEM) was used to estimate the relationship between the measures. The robust weighted least square mean and variance adjusted estimator was used. Three criteria, the comparative fit index, the Tucker-Lewis index, and the root mean square error of approximation, were used to evaluate the goodness-of-fit of the model. RESULTS: A total of 166 caregivers completed the questionnaires. Around 28.3% indicated that pediatric OI patients experienced problems related to mobility, and 25.3% reported difficulty doing usual activities. Around 52.4% of caregivers reported that their care receivers have some emotional problems while 8.4% reported that their care receivers have "a lot of" emotional problems. 'Some problems' on all dimensions on EQ-5D-Y was the most frequently reported health state (13.9%), and around 10.0% have no problems on all dimensions on EQ-5D-Y. Caregivers tended to show a significantly high eHL, financial well-being, and mental health when their care receivers reported no problems with usual activities and emotions. The SEM demonstrated a significant and positive relationship between eHL, financial well-being, and mental health. CONCLUSION: OI caregivers with high eHL reported satisfactory financial well-being and mental health; their care receivers rarely reported living with poor HRQoL. Providing multicomponent and easy-to-learn training to improve caregivers' eHL should be highly encouraged.


Assuntos
Osteogênese Imperfeita , Qualidade de Vida , Humanos , Criança , Qualidade de Vida/psicologia , Cuidadores/psicologia , Saúde Mental , Alfabetização , Inquéritos e Questionários
6.
Front Public Health ; 11: 1169128, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37333519

RESUMO

Purpose: We aim to develop myopia classification models based on machine learning algorithms for each schooling period, and further analyze the similarities and differences in the factors influencing myopia in each school period based on each model. Design: Retrospective cross-sectional study. Participants: We collected visual acuity, behavioral, environmental, and genetic data from 7,472 students in 21 primary and secondary schools (grades 1-12) in Jiamusi, Heilongjiang Province, using visual acuity screening and questionnaires. Methods: Machine learning algorithms were used to construct myopia classification models for students at the whole schooling period, primary school, junior high school, and senior high school period, and to rank the importance of features in each model. Results: The main influencing factors for students differ by school section, The optimal machine learning model for the whole schooling period was Random Forest (AUC = 0.752), with the top three influencing factors being age, myopic grade of the mother, and Whether myopia requires glasses. The optimal model for the primary school period was a Random Forest (AUC = 0.710), with the top three influences being the myopic grade of the mother, age, and extracurricular tutorials weekly. The Junior high school period was an Support Vector Machine (SVM; AUC = 0.672), and the top three influencing factors were gender, extracurricular tutorial subjects weekly, and whether can you do the "three ones" when reading and writing. The senior high school period was an XGboost (AUC = 0.722), and the top three influencing factors were the need for spectacles for myopia, average daily time spent outdoors, and the myopic grade of the mother. Conclusion: Factors such as genetics and eye use behavior all play an essential role in students' myopia, but there are differences between school periods, with those in the lower levels focusing on genetics and those in the higher levels focusing on behavior, but both play an essential role in myopia.


Assuntos
Miopia , Feminino , Humanos , Estudos Retrospectivos , Estudos Transversais , Miopia/epidemiologia , Estudantes , Instituições Acadêmicas , Aprendizado de Máquina
7.
Front Oncol ; 13: 1028830, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37152050

RESUMO

Background: Sentinel lymph node biopsy (SLNB) is the standard treatment for breast cancer patients with clinically negative axilla. However, axillary lymph node dissection (ALND) is still the standard care for sentinel lymph node (SLN) positive patients. Clinical data reveals about 40-75% of patients without non-sentinel lymph node (NSLN) metastasis after ALND. Unnecessary ALND increases the risk of complications and detracts from quality of life. In this study, we expect to develop a nomogram based on genotypic and clinicopathologic factors to predict the risk of NSLN metastasis in SLN-positive Chinese women breast cancer patients. Methods: This retrospective study collected data from 1,879 women breast cancer patients enrolled from multiple centers. Genotypic features contain 96 single nucleotide polymorphisms (SNPs) associated with breast cancer susceptibility, therapy and prognosis. SNP genotyping was identified by the quantitative PCR detection platform. The genetic features were divided into two clusters by the mutational stability. The normalized polygenic risk score (PRS) was used to evaluate the combined effect of each SNP cluster. Recursive feature elimination (RFE) based on linear discriminant analysis (LDA) was adopted to select the most useful predictive features, and RFE based on support vector machine (SVM) was used to reduce the number of SNPs. Multivariable logistic regression models (i.e., nomogram) were built for predicting NSLN metastasis. The predictive abilities of three types of model (based on only clinicopathologic information, the integrated clinicopathologic and all SNPs information, and integrated clinicopathologic and significant SNPs information) were compared. Internal and external validations were performed and the area under ROC curves (AUCs) as well as a series of evaluation indicators were assessed. Results: 229 patients underwent SLNB followed by ALND and without any neo-adjuvant therapy, 79 among them (34%) had a positive axillary NSLN metastasis. The LDA-RFE identified the characteristics including lymphovascular invasion, number of positive SLNs, number of negative SLNs and two SNP clusters as significant predictors of NSLN metastasis. Furthermore, the SVM-RFE selected 29 significant SNPs in the prediction of NSLN metastasis. In internal validation, the median AUCs of the clinical and all SNPs combining model, the clinical and 29 significant SNPs combining model, and the clinical model were 0.837, 0.795 and 0.708 respectively. Meanwhile, in external validation, the AUCs of the three models were 0.817, 0.815 and 0.745 respectively. Conclusion: We present a new nomogram by combining genotypic and clinicopathologic factors to achieve higher sensitivity and specificity comparing with traditional clinicopathologic factors to predict NSLN metastasis in Chinese women breast cancer. It is recommended that more validations are required in prospective studies among different patient populations.

8.
iScience ; 26(4): 106456, 2023 Apr 21.
Artigo em Inglês | MEDLINE | ID: mdl-37063466

RESUMO

Accurate identification of intussusception in children is critical for timely non-surgical management. We propose an end-to-end artificial intelligence algorithm, the Children Intussusception Diagnosis Network (CIDNet) system, that utilizes ultrasound images to rapidly diagnose intussusception. 9999 ultrasound images of 4154 pediatric patients were divided into training, validation, test, and independent reader study datasets. The independent reader study cohort was used to compare the diagnostic performance of the CIDNet system to six radiologists. Performance was evaluated using, among others, balance accuracy (BACC) and area under the receiver operating characteristic curve (AUC). The CIDNet system performed the best in diagnosing intussusception with a BACC of 0.8464 and AUC of 0.9716 in the test dataset compared to other deep learning algorithms. The CIDNet system compared favorably with expert radiologists by outstanding identification performance and robustness (BACC:0.9297; AUC:0.9769). CIDNet is a stable and precise technological tool for identifying intussusception in ultrasound scans of children.

9.
JMIR Public Health Surveill ; 9: e40587, 2023 03 27.
Artigo em Inglês | MEDLINE | ID: mdl-36848242

RESUMO

BACKGROUND: Studies have shown increasing COVID-19 vaccination hesitancy among migrant populations in certain settings compared to the general population. Hong Kong has a growing migrant population with diverse ethnic backgrounds. Apart from individual-level factors, little is known about the migrants' preference related to COVID-19 vaccines. OBJECTIVE: This study aims to investigate which COVID-19 vaccine-related attributes combined with individual factors may lead to vaccine acceptance or refusal among the migrant population in Hong Kong. METHODS: An online discrete choice experiment (DCE) was conducted among adults, including Chinese people, non-Chinese Asian migrants (South, Southeast and Northeast Asians), and non-Asian migrants (Europeans, Americans, and Africans) in Hong Kong from February 26 to April 26, 2021. The participants were recruited using quota sampling and sent a link to a web survey. The vaccination attributes included in 8 choice sets in each of the 4 blocks were vaccine brand, safety and efficacy, vaccine uptake by people around, professionals' recommendation, vaccination venue, and quarantine exemption for vaccinated travelers. A nested logistic model (NLM) and a latent-class logit (LCL) model were used for statistical analysis. RESULTS: A total of 208 (response rate 62.1%) migrant participants were included. Among the migrants, those with longer local residential years (n=31, 27.7%, for ≥10 years, n=7, 20.6%, for 7-9 years, n=2, 6.7%, for 4-6 years, and n=3, 9.7%, for ≤3 years; P=.03), lower education level (n=28, 28.3%, vs n=15, 13.9%, P=.01), and lower income (n=33, 25.2%, vs n=10, 13.2%, P=.04) were more likely to refuse COVID-19 vaccination irrespective of vaccination attributes. The BioNTech vaccine compared with Sinovac (adjusted odds ratio [AOR]=1.75, 95% CI 1.14-2.68), vaccine with 90% (AOR=1.44, 95% CI 1.09-1.91) and 70% efficacy (AOR=1.21, 95% CI 1.03-1.44) compared with 50% efficacy, vaccine with fewer serious adverse events (1/100,000 compared with 1/10,000; AOR=1.12, 95% CI 1.00-1.24), and quarantine exemption for cross-border travelers (AOR=1.14, 95% CI 1.01-1.30) were the vaccine attributes that could increase the likelihood of vaccination among migrants. For individual-level factors, full-time homemakers (AOR=0.44, 95% CI 0.29-0.66), those with chronic conditions (AOR=0.61, 95% CI 0.41-0.91) and more children, and those who frequently received vaccine-related information from the workplace (AOR=0.42, 95% CI 0.31-0.57) were found to be reluctant to accept the vaccine. Those with a higher income (AOR=1.79, 95% CI 1.26-2.52), those knowing anyone infected with COVID-19 (AOR=1.73, 95% CI 1.25-2.38), those having greater perceived susceptibility of COVID-19 infection (AOR=3.42, 95% CI 2.52-4.64), those who received the influenza vaccine (AOR=2.15, 95% CI 1.45-3.19), and those who frequently received information from social media (AOR=1.52, 95% CI 1.12-2.05) were more likely to accept the vaccine. CONCLUSIONS: This study implies that migrants have COVID-19 vaccination preference heterogeneity and that more targeted and tailored approaches are needed to promote vaccine acceptance for different subgroups of the migrant population in Hong Kong. Vaccination promotion strategies are needed for low-education and low-income migrant groups, migrants with chronic diseases, the working migrant population, homemakers, and parents.


Assuntos
COVID-19 , Migrantes , Adulto , Criança , Humanos , Vacinas contra COVID-19 , Hong Kong/epidemiologia , COVID-19/epidemiologia , COVID-19/prevenção & controle , Vacinação
10.
Nat Commun ; 14(1): 238, 2023 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-36646707

RESUMO

Emerging evidence shows that the biomechanical environment is required to support cancer stem cells (CSCs), which play a crucial role in drug resistance. However, how mechanotransduction signals regulate CSCs and its clinical significance has remained unclear. Using clinical-practice ultrasound elastography for patients' lesions and atomic force microscopy for surgical samples, we reveal that increased matrix stiffness is associated with poor responses to neoadjuvant chemotherapy, worse prognosis, and CSC enrichment in patients with breast cancer. Mechanically, TAZ activated by biomechanics enhances CSC properties via phase separation with NANOG. TAZ-NANOG phase separation, which is dependent on acidic residues in the N-terminal activation domain of NANOG, promotes the transcription of SOX2 and OCT4. Therapeutically, targeting NANOG or TAZ reduces CSCs and enhances the chemosensitivity in vivo. Collectively, this study demonstrated that the phase separation of a pluripotency transcription factor links mechanical cues in the niche to the fate of CSCs.


Assuntos
Neoplasias da Mama , Mecanotransdução Celular , Proteína Homeobox Nanog , Proteínas com Motivo de Ligação a PDZ com Coativador Transcricional , Feminino , Humanos , Neoplasias da Mama/genética , Neoplasias da Mama/patologia , Linhagem Celular Tumoral , Proteína Homeobox Nanog/genética , Células-Tronco Neoplásicas/patologia , Fatores de Transcrição/genética , Proteínas com Motivo de Ligação a PDZ com Coativador Transcricional/genética , Nicho de Células-Tronco
11.
Cancer Cell ; 40(11): 1341-1357.e13, 2022 11 14.
Artigo em Inglês | MEDLINE | ID: mdl-36379207

RESUMO

The leukocyte Fcγ receptor (FcγR)-mediated response is important for the efficacy of therapeutic antibodies; however, little is known about the role of FcγRs in other cell types. Here we identify a subset of fibroblasts in human breast cancer that express CD16 (FcγRIII). An abundance of these cells in HER2+ breast cancer patients is associated with poor prognosis and response to trastuzumab. Functionally, upon trastuzumab stimulation, CD16+ fibroblasts reduce drug delivery by enhancing extracellular matrix stiffness. Interaction between trastuzumab and CD16 activates the intracellular SYK-VAV2-RhoA-ROCK-MLC2-MRTF-A pathway, leading to elevated contractile force and matrix production. Targeting of a Rho family guanine nucleotide exchange factor, VAV2, which is indispensable for the function of CD16 in fibroblasts rather than leukocytes, reverses desmoplasia provoked by CD16+ fibroblasts. Collectively, our study reveals a role for the fibroblast FcγR in drug resistance, and suggests that VAV2 is an attractive target to augment the effects of antibody treatments.


Assuntos
Neoplasias da Mama , Receptores de IgG , Humanos , Feminino , Trastuzumab/farmacologia , Receptores de IgG/metabolismo , Fibroblastos , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/genética , Neoplasias da Mama/metabolismo , Matriz Extracelular/metabolismo , Receptor ErbB-2/metabolismo , Microambiente Tumoral , Proteínas Proto-Oncogênicas c-vav/genética , Proteínas Proto-Oncogênicas c-vav/metabolismo
12.
Eur J Pediatr ; 181(12): 4049-4058, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36156120

RESUMO

The objective of this study was to evaluate and compare the psychometric properties of the EQ-5D-Y-3L, EQ-5D-Y-5L, CHU-9D, and PedsQL, in a sample of children and adolescents with osteogenesis imperfecta (OI). A web-based cross-sectional survey was conducted among Chinese children and adolescents with OI in 2021. The EQ-5D-Y-3L, EQ-5D-Y-5L, CHU-9D, and PedsQL were used to assess the health-related quality of life for the participants. Construct validity, including convergent and divergent validity, known-group validity, and test-retest reliability, was examined to assess the psychometric properties of the measures. A total of 157 pediatric OI patients self-completed the questionnaire. Few of them reported the full health status. A strong ceiling effect was observed for all dimensions on the EQ-5D-Y and most on CHU-9D. Most dimensions of the EQ-5D-Y and CHU-9D showed statistically significant correlations with the hypothesized PedsQL subscales. The test-retest reliability for the EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU-9D was acceptable. The EQ-5D-Y-5L showed a better known-group validity than EQ-5D-Y-3L, CHU-9D, and PedsQL in differentiating patients in risk groups. CONCLUSION: The results confirmed that the EQ-5D-Y and CHU-9D are reliable and valid in pediatric OI patients. The EQ-5D-Y-5L performed better than EQ-5D-Y-3L regarding acceptability, convergent validity, and discriminatory power. WHAT IS KNOWN: • Performance of the preference-based measures has never been reported in patients with Osteogenesis imperfecta. WHAT IS NEW: • The EQ-5D-Y demonstrated higher sensitivity and discriminatory power than the CHU-9D in patients with osteogenesis Imperfecta • The EQ-5D-Y-3L performed slightly better than EQ-5D-Y-5L regarding convergent validity and discriminant ability.


Assuntos
Osteogênese Imperfeita , Qualidade de Vida , Humanos , Adolescente , Criança , Psicometria/métodos , Reprodutibilidade dos Testes , Estudos Transversais , Osteogênese Imperfeita/diagnóstico , Inquéritos e Questionários
13.
J Psychiatr Res ; 150: 147-152, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35378487

RESUMO

BACKGROUND: Considerable proportion of people with rare diseases (RDs) have suffered from severe mental health problems. However, specific attention on the psychological quality of life (QoL) of people with RDs is sparse. Evidence documented the benefits of social support and social activity on recipients' mental health and overall QoL, but no corresponding study answered how both social support and social activity work on the psychological QoL among people with RDs. This study aims to report the psychological QoL and evaluate the mediating role of social activity between social support and psychological QoL among people with RDs. METHODS: Data were from two national repetitive cross-sectional surveys, conducted in China in February 2016 and February 2018. In this study, eligible people were those aged 18 or above and had clinical-diagnosed RDs. Psychological QoL was measured by the subdomain of World Health Organization Quality of Life: Brief Version. Social support was measured by the Medical Outcomes Study Social Support Survey. Social activity was measured with seven items selected from the measurement on leisure activities used by the Chinese General Social Survey. Using the mediation model, we assessed the direct and indirect (via social activity) association between social support and psychological QoL, both on overall and subtypes of RDs. We controlled for a variety of potential socioeconomic and demographic confounding factors. RESULTS: Of the 2403 adults studied, their average score of psychological QoL was 42.49 out of 100. The psychological QoL was directly associated with received emotional/information support (coefficient = 0.159, 95% CI = [0.093, 0.231], p < 0.0001) and positive social interaction (coefficient = 0.159, 95% CI = [0.097, 0.221], p < 0.0001). The psychological QoL was indirectly (via social activity) associated with received tangible support (coefficient = -0.035, 95% CI = [-0.046, -0.025], p < 0.0001) and positive social interaction (coefficient = 0.056, 95% CI = [0.040, 0.074], p < 0.0001). Above results by subtypes of RDs were also reported. LIMITATIONS: The causal inference was not able to be investigated due to the cross-sectional study design. CONCLUSION: People with RDs suffered from a low psychological QoL. Social activity mediated the association between social support and psychological QoL, but its mediating role depended on the subscales of social support as well as the subtypes of RDs. Customized measures based on the type of RDs and support that will be provided could perhaps improve the psychological QoL of people with RDs directly and indirectly.


Assuntos
Qualidade de Vida , Doenças Raras , Adulto , Ansiedade , Estudos Transversais , Humanos , Qualidade de Vida/psicologia , Apoio Social , Inquéritos e Questionários
14.
Soc Psychiatry Psychiatr Epidemiol ; 57(8): 1723-1726, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35403898

RESUMO

OBJECTIVE: To explore the factors associated with the psychosocial quality of life (QoL) among adolescents with rare diseases (RDs). METHODS: We used cross-sectional design to collect data in February 2016 and February 2018, respectively, in China through a structured questionnaire. Those included in the study were adolescents aged between 10 and 18 who had a doctor-diagnosed RD. Multivariable linear regression was used to identify the predictors associated with psychosocial QoL among adolescents with RDs. RESULTS: The study included 737 adolescents (28.4% girls). The mean score of their psychological QoL was 43.79 (SD = 20.44). Multivariable linear regression analysis suggests that girls had a lower psychological QoL than boys (adjusted coefficient = -1.87, 95% CI = [-3.53, -0.21]); and receiving an education (adjusted coefficient = 6.53, 95% CI = [4.47, 8.33]), living with parents (adjusted coefficient = 6.45, 95% CI = [3.94, 8.97]), and physical function (adjusted coefficient = 0.53, 95% CI = [0.49, 0.56]) were positively associated with psychological QoL. CONCLUSION: This study reveals the status of psychological QoL among adolescents with RDs. The evidence provided can increase our understanding of the factors associated with psychological QoL among adolescents with RDs and can help formulate policies and put concrete actions into practice.


Assuntos
Qualidade de Vida , Doenças Raras , Adolescente , Criança , China/epidemiologia , Estudos Transversais , Feminino , Humanos , Masculino , Qualidade de Vida/psicologia , Inquéritos e Questionários
15.
Front Med (Lausanne) ; 9: 986851, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36714144

RESUMO

Objective: Due to the changing medical demands in the healthcare system, there is a need for a standardized and professionalized curriculum for genetic counselors. This mixed-method study will observe and evaluate the first Peer Experiential and Reciprocal Supervision (PEERS) training program on genetic counseling among medical practitioners in China; to provide feedback and recommendation for future training and practices. Methods: A genetic counselor training program was held from December 10-11, 2016 in a fetal medicine unit and prenatal diagnosis center in Shanghai with 59 participants from clinical centers, hospitals, and organizations in China. An ethnographic reflexive assessment with a structured questionnaire were used to provide insights and feedback on the training experience. Results: Results indicate an inadequate mastery of genetic and fetal knowledge; lack of empathetic understanding and cultural sensitivity; difficulties in adopting a non-directive counseling approach; distance between reality and fictionality in the training; overall training's helpfulness. Conclusion: The professionalization of genetic counseling in China is in the making with the soaring demands for genetic counseling services; this first experiment of PEERS training turned out to be needed, worth to be adapted toward medical centers across China, to better understand and face the challenges rising from genetic counseling practice.

16.
Breast ; 57: 36-42, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33711698

RESUMO

BACKGROUND: Loss to follow-up (LTFU) during post-operative surveillance of breast cancer patients is detrimental. The pattern of LTFU and its risk factors in Chinese breast cancer patients remains unknown. METHOD: Eligible non-metastatic breast cancer patients who underwent surgery at our institution between 2009 and 2012 were included. The clinicopathological features, as well as the LTFU status, were retrieved from the REDCap database. LTFU was defined as the absence of patients for at least 12 months since her last contact. 5-year LTFU was defined as the LTFU status of each patients at 5 years after surgery. The incidence and potential risk factors of LTFU were analyzed. A LTFU-risk score was developed to quantify the risk of LTFU. RESULTS: A total of 1536 patients with breast cancer were included, and 411(26.8%) patients were 5-year LTFU. 198 patients were LTFU in the first year. Univariate and multivariate analysis revealed that age (younger and older), a lack of medical insurance, longer distance from residence to the hospital, pathology (DCIS/Paget's/Phyllodes), lymph node metastasis, the absence of endocrine therapy and fewer than five contact numbers were significantly and independently associated with the risk of LTFU. A LTFU-risk score was developed and was predictive of LTFU. CONCLUSIONS: A series of risk factors were significantly associated with post-operative LTFU of breast cancer patients. Patients with different risks of LTFU could possibly be identified, and surveillance plans could be individualized for different patients, so as to effectively reduce the overall LTFU rate, and optimize the allocation of medical resources.


Assuntos
Neoplasias da Mama/cirurgia , Perda de Seguimento , Mastectomia , Adulto , Idoso , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/patologia , China/epidemiologia , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco
17.
BMJ Open ; 10(10): e036643, 2020 10 10.
Artigo em Inglês | MEDLINE | ID: mdl-33039992

RESUMO

INTRODUCTION: The ideal treatment for idiopathic granulomatous mastitis (IGM) remains unclear. In a prospective, single-centre, pilot study, we reported that ductal lavage treatment for non-lactational mastitis patients had a 1-year clinical complete response (cCR) rate of >90%, without any significant adverse events. Thus, in this multicentre, randomised, open-label, non-inferiority trial, we will aim to compare the effectiveness and safety of ductal lavage vs oral corticosteroids as the first-line treatment for patients with IGM. METHODS AND ANALYSIS: The trial will be conducted at the Breast Tumor Center of Sun Yat-sen Memorial Hospital in China and at least at one participating regional centre. We plan to recruit 140 eligible IGM patients who will be randomised into the ductal lavage group or oral corticosteroid group with a 1:1 ratio. The patients in the oral corticosteroid group will receive meprednisone or prednisone for 6 months. The patients in the ductal lavage group will receive ductal lavage and breast massage, as previously reported. All the participants will be followed up at the clinic for 1 year post randomisation. The primary endpoint of this trial will be the 1-year cCR rate, and the secondary endpoints will include the time to cCR, treatment failure rate, relapse rate and protocol compliance rate. The trial was designed to determine whether ductal lavage is non-inferior to oral corticosteroids (1-year cCR rate assumed to be 90%), with a non-inferiority margin of 15%. ETHICS AND DISSEMINATION: The ethics committee of Sun Yat-sen Memorial Hospital at Sun Yat-sen University approved the study (2018-Lun-Shen-Yan-No. 30). The results of the trial will be communicated to the participating primary care practices, published in international journals and presented at international clinical and scientific conferences. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Registry (NCT03724903); Pre-results.


Assuntos
Mastite Granulomatosa , Corticosteroides , China , Feminino , Mastite Granulomatosa/tratamento farmacológico , Humanos , Estudos Multicêntricos como Assunto , Recidiva Local de Neoplasia , Projetos Piloto , Estudos Prospectivos , Ensaios Clínicos Controlados Aleatórios como Assunto , Irrigação Terapêutica
18.
Oncologist ; 25(8): e1170-e1180, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32476192

RESUMO

BACKGROUND: This study aimed to investigate whether an immunohistochemical prognostic model (IHC4 score) can predict the prognosis and the chemotherapy benefit in patients with estrogen receptor-positive (ER+)/human epidermal growth receptor 2-negative (HER2-) metastatic breast cancer (MBC). MATERIALS AND METHODS: We developed a method to calculate the modified IHC4 (mIHC4) scores based on routine pathological reports and compared them with the original IHC4 scores that were much more difficult to calculate. Univariate and multivariate analyses were used to study the prognostic factors of progression-free survival (PFS) and overall survival (OS). The predictive value of mIHC4 score was also investigated. RESULTS: The Sun Yat-sen Memorial Hospital data set included 315 patients with newly diagnosed ER+ MBC with a median follow-up of 25.6 months. Univariate and multivariate analysis showed that higher mIHC4 scores in metastatic lesions, but not the ones in primary tumors, were significantly associated with worse PFS and OS. The prognostic value of mIHC4 scores for PFS was validated using an independent Chinese Society of Clinical Oncology- Breast Cancer (CSCO-BC) data set. More importantly, subpopulation treatment effect pattern plot analysis showed that first-line endocrine therapy achieved better PFS and OS than chemotherapy in low-risk patients with ER+/HER2- MBC, whereas first-line chemotherapy was associated with improved PFS and OS compared with endocrine therapy in high-risk ones. The predictive value of mIHC4 score for PFS in selecting first-line endocrine therapy versus chemotherapy was also confirmed in the CSCO-BC data set. CONCLUSION: mIHC4 scores in metastatic lesions are prognostic for the PFS and OS in patients with ER+ MBC. Low or high mIHC4 score may indicate the survival benefit in choosing first-line endocrine therapy or chemotherapy in patients with ER+/HER2- MBC, respectively. IMPLICATIONS FOR PRACTICE: The modified IHC4 (mIHC4) score is easy to implement and able to predict patients with advanced and/or metastatic breast cancer. In addition, with the help of the mIHC4 score, physicians might be able to recommend chemotherapy or endocrine therapy as the first-line treatment for patients with high and low risk as predicted by the mIHC4 score.


Assuntos
Neoplasias da Mama , Receptores de Estrogênio , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Neoplasias da Mama/tratamento farmacológico , Feminino , Humanos , Prognóstico , Intervalo Livre de Progressão , Receptor ErbB-2/genética , Receptor ErbB-2/uso terapêutico
20.
Ann Transl Med ; 7(20): 536, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31807518

RESUMO

BACKGROUND: Male breast cancer (MBC) is a rare malignancy. We aimed to analyze the incidence trends, clinicopathological characteristics, and survival outcomes in early MBC comparison with early female breast cancer (FBC). METHODS: We included eligible MBC and FBC patients with stage I-II disease in the Surveillance, Epidemiology, and End Results (SEER) database from 2000-2015. Joinpoint regression was used to evaluate the trends in age-adjusted incidence. A one-to-four propensity score matching (PSM) analysis was performed to reduce bias in a retrospective study. Survival outcomes were evaluated using Kaplan-Meier analyses with the log-rank test and Cox proportional hazards regression analysis. RESULTS: Trends in the age-adjusted incidence rates of early MBC were stable [2000-2015, annual percentage change (APC) =0.50, 95% confidence interval (CI): -0.1 to 1.1, P=0.102]; however, the incidence of early FBC changed significantly over the time period (2000-2015, APC = 0.30, 95% CI: 0.0 to 0.6, P=0.045). In the matched cohort, unmarried status, higher grade, larger tumor size, and advanced lymph node (LN) status were associated with a higher risk of breast cancer death and death of any causes both in early MBC and FBC patients. The hormone receptor (HR) status was as a prognostic factor in FBC patients, but not in MBC. Early MBC had worse breast cancer-specific survival (BCSS) and overall survival (OS) than early FBC in stage I, stage II and HR-positive subgroup of patients. CONCLUSIONS: The biological behavior, clinicopathological features, and clinical outcomes of early MBC are different from that of FBC. Further studies on individualized treatment approaches in MBC are needed.

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