scholarly journals Current Practices and Challenges in the Diagnosis and Management of PKU in Latin America: A Multicenter Survey

Nutrients ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 2566
Author(s):  
Soraia Poloni ◽  
Bruna Bento dos Santos ◽  
Ana Chiesa ◽  
Norma Specola ◽  
Marcela Pereyra ◽  
...  

This study aimed to describe the current practices in the diagnosis and dietary management of phenylketonuria (PKU) in Latin America, as well as the main barriers to treatment. We developed a 44-item online survey aimed at health professionals. After a pilot test, the final version was sent to 25 practitioners working with inborn errors of metabolism (IEM) in 14 countries. Our results include 22 centers in 13 countries. Most countries (12/13) screened newborns for PKU. Phenylalanine (Phe) targets at different ages were very heterogeneous among centers, with greater consistency at the 0–1 year age group (14/22 sought 120–240 µmol/L) and the lowest at >12 years (10 targets reported). Most countries had only unflavored powdered amino acid substitutes (10/13) and did not have low-protein foods (8/13). Only 3/13 countries had regional databases of the Phe content of foods, and only 4/22 centers had nutrient analysis software. The perceived obstacles to treatment were: low purchasing power (62%), limited/insufficient availability of low-protein foods (60%), poor adherence, and lack of technical resources to manage the diet (50% each). We observed a heterogeneous scenario in the dietary management of PKU, and most countries experienced a lack of dietary resources for both patients and health professionals.

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1955.1-1956
Author(s):  
T. Santiago ◽  
M. Voshaar ◽  
M. De Wit ◽  
P. Carvalho ◽  
M. Boers ◽  
...  

Background:The Glucocorticoid Low-dose Outcome in Rheumatoid Arthritis Study (GLORIA) is an international investigator-initiated pragmatic randomized trial designed to study the effects of low-dose glucocorticoids (GCs) in elderly patients with Rheumatoid Arthritis (RA).The research team is also committed to promote a better understanding of the risks and benefits of these drugs among health professionals and patients. In order to achieve these goals, it is important to assess the current ideas and concerns of patients regarding GCs.Objectives:To evaluate the current patient perspective on the efficacy and risks of GCs in RA patients who are or have been treated with GCs.Methods:Patients with RA completed an online survey (with 5 closed questions regarding efficacy and safety) presented in their native language. RA patients were recruited through a variety of patient organizations representing three continents. Patients were invited to participate through national patient organizations. In the USA, patients were also invited to participate through MediGuard.org. Participants were asked for their level of agreement on a 5-point Likert scale.Results:1344 RA patients with exposure to GCs, from Brazil, USA, UK, Portugal, Netherlands, Germany and 24 other countries** participated: 89% female, mean age (SD) 52 (14) years and mean disease duration 13 (11) years. The majority of participants (84%) had ≥10 years of education. The duration of GCs exposure was 1.6 (4.2) years. The majority of participants had read articles or pamphlets on the benefits or harms of GC therapy.Regarding GCs efficacy (table 1), high levels of endorsement were found: about 2/3 of patients considered that GCs as very useful in their case, more than half considered that GCs were effective even at low doses, and agreed that GC improved RA symptoms within days.Regarding safety (table 1), 1/3 of the participants reported having suffered some form of serious adverse events (AEs) due to GCs, and 9% perceived this as “life-threatening. Adverse events had a serious impact on quality of life, according to about 1/3 of the respondents.Conclusion:Patients with RA exposed to GC report a strong conviction that GCs are very useful and effective for the treatment of their RA, even at low doses. This is accompanied by an important prevalence of serious AEs. Understanding the patient perspective can improve shared decision-making between patient and rheumatologist.Funding statement:This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 634886.Disclosure of Interests:Tânia Santiago: None declared, Marieke Voshaar Grant/research support from: part of phd research, Speakers bureau: conducting a workshop (Pfizer), Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Pedro Carvalho: None declared, Maarten Boers: None declared, Maurizio Cutolo Grant/research support from: Bristol-Myers Squibb, Actelion, Celgene, Consultant of: Bristol-Myers Squibb, Speakers bureau: Sigma-Alpha, Frank Buttgereit Grant/research support from: Amgen, BMS, Celgene, Generic Assays, GSK, Hexal, Horizon, Lilly, medac, Mundipharma, Novartis, Pfizer, Roche, and Sanofi., José Antonio P. da Silva Grant/research support from: Pfizer, Abbvie, Consultant of: Pfizer, AbbVie, Roche, Lilly, Novartis


2021 ◽  
Vol 7 ◽  
pp. 237796082110290
Author(s):  
Jing Xu ◽  
Kristen Hicks-Roof ◽  
Chloe E. Bailey ◽  
Hanadi Y. Hamadi

Introduction Delivery of healthcare services makes up a complex system and it requires providers to be competent and to be able to integrate each of the institute of medicine’s (IOM) 5 core competencies into practice. However, healthcare providers are challenged with the task to be able to understand and apply the IOM core competencies into practice. Objective The purpose of the study was to examine the factors that influence health professional’s likelihood of accomplishing the IOM core competencies. Methods A cross-sectional study design was used to administer a validated online survey to health providers. This survey was distributed to physicians, nursing professionals, specialists, and allied healthcare professionals. The final sample included 3,940 participants who completed the survey. Results The study findings show that younger health professionals more consistently practice daily competencies than their older counterparts, especially in the use of evidence-based practice, informatics, and working in interdisciplinary teams. Less experienced health professionals more consistently applied quality improvement methods but less consistently used evidence-based practice compared to their more experienced counterparts. Conclusion There is a need to understand how health professionals’ age and experience impact their engagement with IOM’s core competencies. This study highlights the need for educational resources on the competencies to be tailored to health providers’ age and experience.


Author(s):  
Ivetteh Gaibor-Santos ◽  
Jennifer Garay ◽  
Daniela A. Esmeral-Ordoñez ◽  
Diana Rueda-García ◽  
Daniel D. Cohen ◽  
...  

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Floriana Fusco ◽  
Renato Civitillo ◽  
Paolo Ricci ◽  
Sylwia Morawska ◽  
Katarzyna Pustułka ◽  
...  

Purpose That on accountability in public organizations is quite an old debate. Its introduction in judicial systems is, however, still viewed with some suspicion, due to its potential trade-off with independence and impartiality. Nevertheless, the need to respond to the demands for greater transparency and accountability has also pushed judicial organizations to establish a dialogue with a wide range of subjects. This study aims to explore the understanding and the current practices of sustainability reporting currently in place in judicial systems. Design/methodology/approach The study adopts a comparative approach, conducting an online survey in two European countries (Italy and Poland). The survey was built around the research questions and literature and administered between February and March 2020. Specifically, 804 courts were involved, of which 430 are in Italy and 374 in Poland. Findings Findings show that the current practices are still not widespread and there is still a lack of understanding of what sustainability reporting is, and therefore, of what its potential usefulness within the courts could be. Moreover, many differences between the two countries are pointed out, so it is possible to assume that the different cultural and institutional settings influence sustainability reporting practices. Finally, some interesting implications for policymakers are provided. Originality/value Judicial organizations are still poorly investigated in the literature, despite being at the center of a wide public and political debate. Moreover, the international comparative perspective adopted constitutes a further aspect of novelty.


2019 ◽  
Vol 30 (6) ◽  
pp. 542-549 ◽  
Author(s):  
Alberto Edeza ◽  
Omar Galarraga ◽  
David Novak ◽  
Kenneth Mayer ◽  
Joshua Rosenberger ◽  
...  

In Latin America, men who have sex with men (MSM) remain disproportionately impacted by HIV. Pre-exposure prophylaxis (PrEP) is an effective HIV prevention tool and has been FDA approved in the United States since 2012, but no Latin American state, with the recent exception of Brazil, has implemented PrEP guidelines. We carried out a multinational online survey of MSM in Latin America (n = 22698) in 2012 to assess whether MSM at highest risk of HIV acquisition (i.e., those engaging in condomless anal sex [CAS; n = 2606] and transactional sex [n = 1488]) had higher levels of awareness of PrEP, PrEP use and interest in participating in a PrEP trial. After adjusting for demographic and psychosocial characteristics including depressive symptoms, hazardous alcohol use, childhood sexual abuse, and sexual compulsivity, transactional sex and CAS were associated with increased PrEP awareness (aOR = 1.29, 95% CI: 1.05–1.59, p < .001 and aOR = 1.22, 95% CI: 1.11–1.34, p < .001, respectively) and PrEP trial interest (aOR = 1.45, 95% CI: 1.25–1.71, p < .001 and aOR = 1.74, 95% CI: 1.57–1.95, p < .001, respectively). Findings demonstrate substantial awareness of and interest in PrEP among MSM with behavioral risk factors for HIV in Latin America, suggesting that this region is primed for PrEP implementation, which has been slow.


2016 ◽  
Vol 14 (S1) ◽  
Author(s):  
Sara McAleese ◽  
Barbara Clyne ◽  
Anne Matthews ◽  
Ruairí Brugha ◽  
Niamh Humphries

2020 ◽  
pp. 082585972097393
Author(s):  
Linda Lee ◽  
Loretta M. Hillier ◽  
Stephanie K. Lu ◽  
Donna Ward

Background: Lack of tools to support advance care planning (ACP) has been identified as a significant barrier to implementing these discussions. Aim: We pilot tested an ACP framework tool for use with persons living with dementia (PLWD) in primary care-based memory clinics and an Adult Day Program; this study describes user and recipient experiences with this framework. Methods: We used a mixed methods approach. Health professionals completed an online survey following pilot testing and PLWD and substitute decision makers (SDM) completed survey immediately following the ACP discussion assessing their satisfaction (5-point scale) with the framework and exploring potential outcomes. Interviews with health professionals, PLWD, and SDM were conducted to gather more in-depth information on their perceptions of the ACP framework/ discussion. Results: Surveys were completed by 12 health professionals, 13 PLWD, and 16 SDM. While PLWD and SDM were satisfied with the ACP discussion (M = 4.0/5), health professionals were minimally satisfied with the ease of use of the framework (M = 2.0/5), acceptability for patients (M = 2.4/5) and feasibility in practice (M = 1.9/5). Sixteen interviews were completed with 8 health professionals, 1 PLWD, and 7 SDM. While health professionals valued ACP, lack of time and training were identified barriers to framework use. SDM felt better prepared for future decisions and PLWD were put at ease, knowing that their wishes for care were understood. Conclusion: PLWD and SDM value the opportunity for ACP, and although health professionals identified some concerns with framework administration, they acknowledge the value and importance of ACP. Continuing efforts to refine ACP processes are justified.


2021 ◽  
Vol 12 ◽  
Author(s):  
Eun Sol Lee ◽  
Vin Ryu ◽  
Ji Hyun Lee ◽  
Hyeon Hong ◽  
Hyeree Han ◽  
...  

Background: Job stress of mental health professionals can have a negative impact on them, particularly their psychological health and mortality, and may also affect organizations' and institutions' ability to provide quality mental health services to patients.Aim: This study aimed to: (1) investigate the validity and reliability of the Korean Mental Health Professionals Stress Scale (K-MHPSS), (2) develop K-MHPSS cut-off points to measure clinical depression and anxiety, and (3) examine whether specific stressors vary by area of expertise.Methodology: Data were collected via an online survey over 3 months, from August to October 2020. An online survey using a survey website was administered to volunteers who accessed the link and consented to participate. Data from 558 participants (200 clinical psychologists, 157 nurses, and 201 social workers) were included in the final analysis. Confirmatory and exploratory factor analyses were conducted to examine the factor structure of the K-MHPSS; concurrent validity of the scale was determined by analyzing correlation; internal consistency was determined by Cronbach's alpha coefficient. In addition, ROC curve analysis and Youden's index were used to estimate optimal cut-off points for K-MHPSS; one-way ANOVA was performed to investigate the difference among the three groups.Results: The seven-factor model of the original scale did not be replicated by Korean mental health professionals. The K-MHPSS had the best fit with the six-factor model, which consists of 34 items. Concurrent validity was confirmed, and overall reliability was found to be good. The K-MHPSS cut-off points for depression and anxiety appeared to slightly different by professional groups. Furthermore, nurses and social workers showed significantly higher total scores compared to clinical psychologists, and there are significant differences in subscale scores among professionals.Conclusion: The Korean version of the MHPSS has appropriate psychometric properties and can be used to assess the occupational stress of mental health professionals. It can also serve as a reference point for screening clinical level of depression and anxiety in mental health professionals.


2022 ◽  
Vol 8 (1) ◽  
pp. 5
Author(s):  
Jane Chudleigh ◽  
Jürg Barben ◽  
Clement L. Ren ◽  
Kevin W. Southern

The main aim of the present study was to explore health professionals’ reported experiences and approaches to managing children who receive a designation of cystic fibrosis transmembrane conductance regulator-related metabolic syndrome/cystic fibrosis screen positive inconclusive diagnosis following a positive NBS result for cystic fibrosis. An online questionnaire was distributed via Qualtrics Survey Software and circulated to a purposive, international sample of health professionals involved in managing children with this designation. In total, 101 clinicians completed the online survey: 39 from the US, six from Canada, and 56 from Europe (including the UK). Results indicated that while respondents reported minor deviations in practice, they were cognizant of recommendations in the updated guidance and for the most part, attempted to implement these into practice consistently internationally. Where variation was reported, the purpose of this appeared to be to enable clinicians to respond to either clinical assessments or parental anxiety in order to improve outcomes for the child and family. Further research is needed to determine if these findings are reflective of both a wider audience of clinicians and actual (rather than reported) practice.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 1537-1537
Author(s):  
Carolina Bernabe Ramirez ◽  
Ana I. Velazquez Manana ◽  
Coral Olazagasti ◽  
Cristiane Decat Bergerot ◽  
Enrique Soto Perez De Celis ◽  
...  

1537 Background: The severe acute respiratory syndrome 2 (SARS-cov-2) virus causing COVID-19 has brought great challenges to global health services affecting cancer care delivery, outcomes, and increasing the burden in oncology providers (OP). Our study aimed to describe the challenges that OP faced while delivering cancer care in Latin America. Methods: We conducted an international cross-sectional study using an anonymous online survey in Spanish, Portuguese, and English. The questionnaire included 43 multiple choice questions. The sample was stratified by OP who have treated patients with COVID-19 versus those who have not treated patients with COVID-19. Data was analyzed with descriptive statistics and Chi-square tests. Results: A total of 704 OP from 20 Latin American countries completed the survey (77% of 913 who started the survey). Oncologists represented 46% of respondents, followed by 25% surgical-oncologists. Of the respondents, 56% treated patients with COVID-19. A significant proportion of OP reported newly adopting telemedicine during COVID-19 (14% vs 72%, p=0.001). More than half (58%) of OP reported making changes to the treatments they offered to patients with cancer. As shown in the table, caring for patients with COVID-19 significantly influenced practice patterns of OP. Access to specialty services and procedures was significantly reduced: 40% noted significantly decreased or no access to imaging, 20% significantly decreased or no access to biopsies, 65% reported delays in surgical oncology referrals, and 49% in radiation oncology referrals. A vast majority (82%) reported oncologic surgeries were delayed or cancelled, which was heightened among those treating patients with COVID-19 (87% vs 77%, p=0.001). Conclusions: The COVID-19 pandemic has significantly affected the way cancer care is delivered in globally. Although changes to healthcare delivery are necessary as a response to this global crisis, our study highlights the significant disruption and possible undertreatment of patients with cancer in Latin America that results from COVID-19.[Table: see text]


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