PLoS ONE最新文献

{"title":"Retrospective study of incidence/prevalence of pigmentary maculopathy and retinopathy in patients receiving pentosan polysulfate sodium.","authors":"Zhong Yuan, Subusola Vaughan, Carolyn Jeffcoat, Peter Hu, Ritchie Yuson, Daniel Fife, Durga Borkar","doi":"10.1371/journal.pone.0313497","DOIUrl":"10.1371/journal.pone.0313497","url":null,"abstract":"<p><strong>Purpose: </strong>To evaluate prevalence and incidence rates of pigmentary maculopathy and retinopathy (PM/PR), and visual acuity (VA) changes in patients exposed to pentosan polysulfate sodium (PPS) and in patients with interstitial cystitis (IC) not exposed to PPS.</p><p><strong>Methods: </strong>This is a retrospective cohort study (January 2015-March 2021) which included adult de-identified patients from the American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) and Komodo Health database. Three patient cohorts were identified: two PPS-exposed patient cohorts, and Non-PPS-exposed IC patient cohort. Key study outcomes included PM/PR/Any (defined based on prior literature regardless of PPS exposure) and PM/PR/PPS (further defined by an algorithm that was based on clinical notes and other protocol-prespecified criteria in PPS-exposed patients), and VA changes in each respective cohort.</p><p><strong>Results: </strong>Prevalence of PM/PR/Any was relatively common in patients prior to PPS exposure (4.16%-8.43%). Incidence rate of PM/PR/PPS was uncommon in both PPS-exposed cohorts (0.13-0.15 per 100 person-years). Crude incidence rates of PM/PR/Any (based on ITT analysis) varied slightly across 3 study cohorts (2.13-2.81 and 2.38 per 100-person-years for PPS-exposed cohorts and Non-PPS-exposed IC cohort, respectively). Across all 3 study cohorts, patients with PM/PR/Any appeared to have approximately 2-fold higher proportion of 3 lines of VA worsening than those without PM/PR/Any.</p><p><strong>Conclusion: </strong>Prevalence of PM/PR was common in patients prior to PPS exposure. Incidence of PM/PR/PPS that may be associated with PPS exposure was relatively uncommon. Crude incidence rates of PM/PR appeared similar across all patient cohorts regardless of PPS exposure.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0313497"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717312/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953460","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The experience of living with human immunodeficiency virus among adolescents at Felege Hiwot Comprehensive Specialized Hospital Bahir-Dar, Northwest Ethiopia, A phenomenological study.","authors":"Bazezew Asfaw Guadie, Minyichil Birhanu Belete, Meseret Mekuriaw Beyene, Ayalew Kassie Melese, Tarik Yenew Tessema, Yinager Workineh","doi":"10.1371/journal.pone.0308347","DOIUrl":"10.1371/journal.pone.0308347","url":null,"abstract":"<p><strong>Background: </strong>Adolescents who have the human immunodeficiency virus face difficulties in their lives not just from the physical consequences of the illness but also from social stigma and discrimination. The quantitative side of this issue was the focus of earlier Ethiopian research. However, there hasn't been any prior research done extensively in Ethiopia on the real-life experiences of teenagers infected with HIV. Therefore, in order to address the real issues that these teenagers encounter, it is imperative that we investigate their lived experiences as HIV-positive adolescents.</p><p><strong>Objective: </strong>The goal is to investigate the experiences that adolescents at Felege Hiwot Comprehensive Specialized Hospital who are infected with HIV have on a daily basis.</p><p><strong>Method: </strong>A phenomenological approach was conducted among thirteen purposively selected adolescents at Felege Hiwot Comprehensive Specialized Hospital, Bahir-Dar, northwest Ethiopia, from March 25 to April 30, 2023. Information saturation was used to estimate the sample size. Data was gathered through semi-structured open-ended interview guides and in-depth interview techniques. The talk was recorded using an audio recorder. The data was transcribed verbatim. The conceptual translation approach was used to translate the transcribed data from Amharic to English. For additional analysis, the translated data was entered into the Atlas.ti.8 program. To demonstrate findings, the inductive thematic analysis technique was applied using illustrative quotes. Colleague feedback, member checks, and a debriefing were used to guarantee the quality of the data.</p><p><strong>Result: </strong>Eleven subthemes, including main theme of \"lived with burdens of immunodeficiency virus,\" \"disclosure,\" \"ART adherence,\" and \"future aspiration,\" were used to describe the findings. The participants discussed how difficult it has been for them to deal with social, emotional, and psychological difficulties in addition to living with the HIV infection. They kept their illness a secret from others out of fear of prejudice and stigma. In conclusion, adolescents infected with the human immunodeficiency virus faced a variety of difficulties related to their mental health, relationships, emotions, and compliance. It is advised that the community get ongoing, comprehensive health education in order to prevent stigmatization and discrimination against young people who have the virus.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0308347"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717265/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953474","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"From union clout to corporate couture: Unveiling the impact of trade unions on corporate social responsibility.","authors":"Anshul Mandliya, Jatin Pandey, Shrihari Suresh Sohani, Rayees Ahmad Sheikh","doi":"10.1371/journal.pone.0311244","DOIUrl":"10.1371/journal.pone.0311244","url":null,"abstract":"<p><p>Trade unions and corporate social responsibility (CSR) are important institutional mechanisms through which corporations undertake responsibility for their for-profit as well as not-for-profit actions. This study explores the roles of trade unions, management, and shareholders in influencing environmental, social, and governance (ESG) controversies and CSR reporting. Drawing on instrumental stakeholder theory, we argue that while management and shareholders typically focus on governance, profitability, and operational efficiency, trade unions act as critical relational stakeholders advocating for employee welfare and social sustainability. Using a sample of 416 firms over a period of 10 years, our findings reveal that trade unions significantly reduce ESG controversies and enhance CSR reporting by advocating for employee welfare and social sustainability. In contrast, management significantly impacts CSR reporting but notably does not influence ESG controversies. Lastly, shareholders, who are important for governance and profitability, exhibit minimal impact on both ESG controversies and CSR reporting.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0311244"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717276/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953129","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comprehensive multi-metric analysis of user experience and performance in adaptive and non-adaptive lower-limb exoskeletons.","authors":"Krongkaew Supapitanon, Tanyaporn Patathong, Chaicharn Akkawutvanich, Arthicha Srisuchinnawong, Worachit Ketrungsri, Poramate Manoonpong, Patarawan Woratanarat, Chanika Angsanuntsukh","doi":"10.1371/journal.pone.0313593","DOIUrl":"10.1371/journal.pone.0313593","url":null,"abstract":"<p><p>Among control methods for robotic exoskeletons, biologically inspired control based on central pattern generators (CPGs) offer a promising approach to generate natural and robust walking patterns. Compared to other approaches, like model-based and machine learning-based control, the biologically inspired control provides robustness to perturbations, requires less computational power, and does not need system models or large learning datasets. While it has shown effectiveness, a comprehensive evaluation of its user experience is lacking. Thus, this study addressed this gap by investigating the performance of a state-of-the-art adaptive CPG-based exoskeleton control system (intelligent mode) under a multi-metric analysis (involving three-dimensional gait analysis, muscle activity, oxygen consumption, user comfort, and exoskeleton performance scores) and comparing it to a standard commercial exoskeleton control system (default mode). A cross-over design with randomized allocation in Thai healthy and independently walking adults ensured participants experienced both modes. All participants were assigned into two groups to receive an alternate sequence of walking with the intelligent mode or the default mode of the lower-limb exoskeleton Exo-H3 at high and normal speed. From eight participants, the intelligent mode-driven exoskeleton (adaptive exoskeleton) showed a significantly lower velocity, stride, and step lengths than the default mode-driven exoskeleton (non-adaptive exoskeleton). This setup significantly increased anterior pelvic tilt during mid-swing at normal speed (3.69 ± 1.77 degrees, p = 0.001) and high speed (2.52 ± 1.69 degrees, p = 0.004), hip flexion during stance phase with ankle dorsiflexion, and used less oxygen consumption at high speed (-2.03 ± 2.07 ml/kg/min) when compared to the default one. No significant differences of muscle activity, user comfort and exoskeleton performance scores between the two modes. Further exoskeletal modification in terms of hardware and control is still needed to improve the temporal spatial, kinematics, user comfort, and exoskeleton performance.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0313593"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717227/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953288","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Establishment of a physical exercise evaluation index system for school-age children with asthma.","authors":"Yueheng Zhao, Xianmei Meng, Suqing Wang","doi":"10.1371/journal.pone.0312398","DOIUrl":"10.1371/journal.pone.0312398","url":null,"abstract":"<p><strong>Objective: </strong>To construct a comprehensive physical exercise evaluation index system for asthmatic children aged 6-12 years.</p><p><strong>Design: </strong>Based on knowledge-attitude-practice(KAP) theory, we constructed an item pool for a physical exercise evaluation index system using a literature review and semistructured interviews and refined the index system through two questionnaire cycles with Delphi experts.</p><p><strong>Results: </strong>For the two questionnaire rounds, the recovery rate was 100%, the experts' authority coefficients were 0.850 and 0.836, and the coordinated coefficients were 0.167 and 0.202 (P<0.001). Finally, four first-level indicators, namely, disease factors, exercise environment, exercise practice, and exercise psychology; 11 second-level indicators; and 50 third-level indicators were developed as a physical exercise evaluation index system for asthmatic children.</p><p><strong>Conclusion: </strong>A physical exercise evaluation index system built using a literature review, qualitative interviews, and Delphi technique can provide scientific guidance for children with asthma, caregivers and health professionals to comprehensively assess the children's physical exercise.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0312398"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717281/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953297","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of body weight-supported Tai Chi Yunshou training on upper limb motor function in stroke patients: A three-arm parallel randomized controlled trial.","authors":"Liying Zhang, Xiaoming Yu, Wangsheng Liao, Jiening Wang, Yan Lu, Naizhen Wang, Zhou Huanxia","doi":"10.1371/journal.pone.0314025","DOIUrl":"10.1371/journal.pone.0314025","url":null,"abstract":"<p><strong>Objectives: </strong>To form a unique body weight support-Tai Chi Yunshou (BWS-TCY) training method, apply it to the treatment of upper limb dysfunction after stroke, and provide a new safe and effective treatment method for the clinic.</p><p><strong>Methods: </strong>A total of 93 subjects were recruited and randomly divided into conventional rehabilitation treatment (CRT) group, BWS-TCY group and traditional robot-assisted training (RAT) group in equal proportions. Subjects in the CRT group received 60 minutes of CRT daily. Subjects in the BWS-TCY group received 30 minutes of CRT and 30 minutes of BWS-TCY. Subjects in the RAT group received 30 minutes of CRT and 30 minutes of RAT. All interventions were conducted 5 days per week for 12 weeks. Outcome assessments included the Fugl-Meyer Upper Extremity Motor Function Assessment (FMA-UE), Wolf Motor Function Test (WMFT), absolute angular error (AAE), joint range of motion (JMA), modified Barthel Index (MBI), and stroke-related quality of life. Table (SS-QOL). Outcome measures were assessed at baseline, 4 weeks, 8 weeks, and 12 weeks later, and statistical analyzes were performed using two-way repeated measures analysis of variance.</p><p><strong>Results: </strong>After 12 weeks of intervention, significant improvements were observed in all evaluation indicators for the three groups of subjects compared to before the intervention. The upper limb motor function (FMA-UE and WMFT) and proprioception (AAE) showed time effects, time × group interaction effects, and group effects. When comparing the groups, the FMA-UE in the BWS-TCY group, as well as the WMFT and MBI, showed statistically significant differences compared to the CRT group (P<0.05), but not statistically significant compared to the RAT group (P>0.05). The AAE of the BWS-TCY group showed no statistical difference (P>0.05) when compared to the CRT group and RAT group. Furthermore, a time effect was observed on the rotation direction (P<0.05), and pairwise comparison between groups revealed that the BWS-TCY group performed better than both the CRT group and the RAT group. After 12 weeks of intervention, there were time effects and interaction effects between BWS-TCY and daily living activities (MBI) and quality of life (SS-QOL), but no group effect was observed. There was no statistical difference between the two groups in SS-QOL. However, there was a statistical difference (P<0.01) in MBI between the two groups.</p><p><strong>Conclusions: </strong>The 12-week BWS-TCY intervention has been shown to effectively improve upper limb motor function.</p><p><strong>Trial registration: </strong>Retrospectively registered at chictr.org.cn on August 31, 2022 [ChiCTR2200063150] https://www.chictr.org.cn/showproj.html?proj=176229.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0314025"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717223/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953312","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cross-layer latency analysis for 5G NR in V2X communications.","authors":"Jorge Horta, Mario Siller, Salvador Villarreal-Reyes","doi":"10.1371/journal.pone.0313772","DOIUrl":"10.1371/journal.pone.0313772","url":null,"abstract":"<p><p>The 5G network was developed to push the capabilities of wireless networks to previously unseen performance limits, e.g., transmission rates of several gigabits per second, latency of less than a millisecond, and millions of devices connected at the same time. To meet these requirements, it is necessary to access new spectrum (the so-called millimeter waves) and use techniques such as Massive MIMO (Multiple-Input Multiple-Output) and beamforming. This required the design of a new radio interface, known as 5G NR, that includes improvements to its physical components and new protocols. The performance of the 5G network will depend heavily on the behavior of these new protocols under certain configuration parameters, traffic conditions, device density, and network architecture. This paper introduces an analytical model for the performance evaluation of 5G NR. The developed model describes the behavior of the different layer 1 and 2 protocols involved in 5G radio communication. Using the model, it is possible to evaluate the performance of 5G NR in terms of throughput and latency, two key performance metrics used to describe QoS (Quality of Service) thresholds of different applications. The protocol layer approach gives the model sufficient granularity to identify critical behaviors that significantly impact performance. This can help focus efforts on improving these key points or propose improvements/modifications to the operation of network protocols or devices. The use of this model for performance evaluation is exemplified by studying a Remote Driving scenario operated over 5G. This scenario has very stringent delay requirements, which, according to the model's results, can be satisfied if the network conditions are adequate. This model and its results can be used as a starting point for performance evaluations of application involving end-to-end (E2E) communications.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0313772"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717243/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953329","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Genetic variability and population structure analysis of Protostrongylus oryctolagi (Nematoda: Protostrongylidae) in Lepus europaeus from Central and Northern Italy.","authors":"Ilaria Guarniero, Laura Stancampiano, Rafaella Franch, Elisa Armaroli, Fabio Macchioni, Enrico Negrisolo","doi":"10.1371/journal.pone.0313998","DOIUrl":"10.1371/journal.pone.0313998","url":null,"abstract":"<p><p>Nematodes are abundant and ubiquitous animals which are poorly known at intraspecific level. This work represents the first attempt to fill the gap on basic knowledge of genetic variability and differentiation in Protostrongylus oryctolagi, a nematode parasite of lagomorphs. 68 cox1 sequences were obtained from brown hares collected in five locations in Northern and Central Italy, highlighting the presence of a high amount of genetic variation inside this species. The eleven haplotypes identified (Haplotype diversity equal to 0.702) were split into two lineages: lineage A (comprising six different haplotypes, A1-A6) and lineage B (B1-B5). The mean intra-lineage amount of genetic variation was 0.3%, whereas the inter-lineage percentage of variation was ten-fold higher (3%). These two lineages were non-randomly distributed in the investigated areas. Lineage A showed a preference for Central Italy (Tuscany) even if it was sporadically found also in northern territories (Emilia-Romagna), while B-haplotypes were present exclusively in Emilia-Romagna. The analysis of molecular variance identified two main barriers to gene flow: (i) a strong major one which separate samples of Central Italy (PIA and GR7) from the northern ones (RE1, RE3 and MO1; ΦST = 0.750, P = 0.00); (ii) a secondary faint barrier which separates Pianosa island from Grosseto (ΦST = 0.133, P = 0.00). Any difference was found among northern samples (ΦST = 0.009, P = 0.00). The observed data may be explained by several factors ranging from the parasite's biology (presence of a narrow host spectrum), the final host's behaviour (small home range), the natural dispersion of the host-parasite dyad occurred in past or the recent passive men-mediated migration. Finally, the presence of unconventional shortened amplicons revealed the presence of NUMTs (nuclear copy of mitochondrial genes) in the P. oryctolagi nuclear genome, suggesting caution when using DNA barcode as unique marker for the identification of species belonging to this genus. \"In short, if all the matter in the universe except the nematodes were swept away, our world would still be dimly recognizable\". Nathan Augustus Cobb, from \"Nematodes and Their Relationships\", 1915.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0313998"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717190/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953331","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Enhancing public sector employees ' professional identity: A study using China's Labor Force Survey data.","authors":"Xiaotong Ren, Aimin Zhu, Jiao Yu, Chunna Guo","doi":"10.1371/journal.pone.0313603","DOIUrl":"10.1371/journal.pone.0313603","url":null,"abstract":"<p><p>Public sector employees, as the crucial link between the party, government, and the general public, represent the frontline in safeguarding the interests of the people and providing services to them. They profoundly influence the implementation and execution of national policy directives. Using data from China's Labor Force Survey and employing a combination of exploratory factor analysis and confirmatory factor analysis, this research constructs an evaluation index system for public sector employees' Professional Identity. By dividing the evaluation index system into secondary indicators, and utilizing a structural equation standardization model, the study accurately determines the extent to which each level of indicators within the evaluation index system influences Professional Identity. This research provides pathway recommendations to enhance the Professional Identity of public sector employees, with the aim of mitigating occupational burnout and improving the quality of public services.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0313603"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717271/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953348","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Like milk on the stove: Healthcare professionals navigating uncertainty when caring for families with 22q11DS.","authors":"Sophie Ayoub, Eva De Clercq, Cheryl Cytrynbaum, Luzius A Steiner, Bernice S Elger","doi":"10.1371/journal.pone.0313845","DOIUrl":"10.1371/journal.pone.0313845","url":null,"abstract":"<p><strong>Introduction: </strong>22q11 deletion syndrome (22q11DS) results from a microdeletion on chromosome 22 and is the most common microdeletion disorder in humans, affecting 1 in 2148 live births. Clinical manifestations vary widely among individuals and across different life stages. Effective management requires the involvement of a specialized multidisciplinary team. This study aims to explore the experiences of healthcare professionals in caring for the families of children with 22q11DS, focusing on their challenges, rewards, and coping strategies.</p><p><strong>Methods: </strong>Data for this interview study were collected as part of a broader mixed methods research project aimed at enhancing the psychosocial well-being of children aged 3-15 years with 22q11DS and their families. The qualitative aspect of this study focused on capturing the experiences of healthcare professionals involved in their care, recruited purposively through collaborators and snowball sampling methods. Reflexive thematic analysis of semi-structured interviews was performed after verbatim transcription.</p><p><strong>Results: </strong>Twenty healthcare providers from different specialties were interviewed. The majority had a working experience of more than 10 years and were part of a 22q11DS clinic. After data analysis, four themes (and many sub-themes) were identified that were all related to the topic of uncertainty: acknowledging uncertainty, sharing uncertainty, acting on uncertainty and coping with uncertainty. Many experts showed a sense of humbleness when caring for the families and most of the participants emphasized the role of peer support and multidisciplinary teams.</p><p><strong>Conclusion: </strong>Our study reveals how healthcare professionals manage the uncertainty associated with 22q11DS, highlighting the importance of peer support and multidisciplinary team collaboration. Providers recognize the limits of their medical expertise and value the perspectives of families living with the condition. Their coping strategies play a critical role in handling uncertainty and suggest a need for further emphasis in the literature on the experiences of healthcare professionals dealing with rare diseases.</p>","PeriodicalId":20189,"journal":{"name":"PLoS ONE","volume":"20 1","pages":"e0313845"},"PeriodicalIF":2.9,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11717309/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142953362","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"综合性期刊","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}