Ethical consideration in programme evaluation for health professional education programmes.

Objectives: To explore the ethical considerations and measures of quality assurance during data-collection for programme evaluation in health professional education. METHODS: The qualitative case study was conducted at Bahria University of Health Sciences, Karachi, from August to November 2023, and comprised faculty members involved in programme evaluation for at least two years having done a minimum two audit cycles. System thinking philosophical framework was used during the data-collection phase. A diverse sample was selected to ensure representation from different sectors and roles within the teams. Data was collected through participant observation, semi-structured interviews and focus group discussions. Data was subjected to thematic analysis. RESULTS: There were 7 faculty members who were interviewed individually twice in addition to 4 focus group discussion. Members of quality assurance team were experts in their respective fields, but were not found to be wellversed in terms of ethical considerations that should guide data-collection. This lack of knowledge may inadvertently lead to ethical lapses in the evaluation process. Another ethical challenge seen was bias in the data-collection phase. Conclusion: Faculty members integral to programme evaluation efforts were found to lack knowledge regarding ethical considerations in data-collection, which can pose significant risks.

Publication Trends and Surgeon Perceptions: A Comprehensive Analysis of Gender Disparities in Craniofacial Surgery.

In academic craniofacial surgery, gender disparities exist across various metrics including faculty positions, leadership roles, and conference representation. This study benchmarks the academic productivity of craniofacial surgeons in 2022 and surveys their perspectives regarding diversity, equity, and inclusion (DEI).Total, first author, and senior author PubMed publications in 2022 were recorded for 193 craniofacial attendings and fellows. Craniofacial surgeons were also surveyed regarding academic experience, leadership roles, and DEI perceptions.Electronic.26 craniofacial attendings.Total, first author, and senior author publication counts in 2022.Women comprised 27% (n = 53) of the craniofacial surgeon cohort. Men led total publications (81% vs 19%, p < 0.001), senior-author publications (84% vs 16%, p < 0.001), average total publications (6.6 vs 4.0, p = 0.043), and average senior-author publications (3.1 vs 1.5, p = 0.02). Sub-analysis of craniofacial fellows showed a higher proportion of women (65%) with no statistical difference in total or average publication counts. Survey responses (n = 26) included a perceived lack of female representation in academic and leadership roles. Barriers included inadequate support from current leadership, systemic issues, and biases. Recommendations for improvement included mentorship programs, targeted recruitment, and equitable conference speaker selection.Ongoing gender disparities are evident in craniofacial surgery, particularly in academic metrics. However, trends in younger cohorts exhibit more balanced gender representation, publication records, and leadership positions, indicating potential improvements. Further studies are needed to examine these cohorts more comprehensively and longitudinally. Sustained commitment, including mentorship programs and enhanced DEI efforts, is needed to continue this progress.

"A National Review of Crowdfunding for Plagiocephaly Helmets".

OBJECTIVE: Custom prescription helmets for plagiocephaly may be a significant financial burden for families, especially when not covered by insurance. This study aims to identify factors that influence the success of crowdsourcing campaigns for this therapy. DESIGN: GoFundMe campaigns were collected by searching terms such as "plagiocephaly" and "baby helmet." Two reviewers analyzed each campaign for variables, including demographic data, story elements, and photo characteristics. Univariate logistic regression was used to determine each variable's impact on success, defined as attaining ≥75% of a campaign goal and significance of p ≤ 0.05. RESULTS: Campaign data from 2011 to 2022 were analyzed. Initial search yielded 1464 campaigns; among these 413 met final inclusion criteria. On average, campaigns raised $2005 (range: $0-$7799) and requested $3151 (range: $160-$30,000). In total, 228 (54%) achieved success, 167 (40%) met their goal, and 35 (8%) raised no funds. A total of $828,256 was raised from the requested $1,301,317. The average reported age was six months (range: 2-17 m). Significant factors associated with success were military affiliation, providing multiple images, including a quoted cost, providing campaign updates, indicating a sense of urgency, diagnosis of torticollis, and mentioning possible complications without treatment. Raising additional funds for therapy, multiple helmets, and unrelated medical costs negatively impacted success. Racial disparities were observed between campaigns. Additionally, regional differences were noted between campaigns. CONCLUSIONS: Crowdsourcing can be a successful endeavor for some families experiencing financial hardships from helmet therapy. This study highlights current gaps within healthcare coverage for helmet treatment and identifies various factors influencing crowdfunding campaigns.

Sociodemographic Disparities in Craniosynostosis: A Systematic Review.

OBJECTIVE: Given the consequences of delayed treatment and diagnosis of craniosynostosis, this study reviews the literature on sociodemographic risk factors and disparities associated with delayed craniosynostosis treatment. DESIGN: A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A literature search of PubMed/Medline and Embase was performed by two independent reviewers. Included studies discussed craniosynostosis health disparities. Demographic characteristics and outcomes were analyzed. SETTING: Not applicable. PATIENTS: Patients with craniosynostosis. INTERVENTIONS: Standard surgical intervention for craniosynostosis. RESULTS: Our literature search yielded 273 studies, of which 18 were included for analysis. Included studies represented data from 31 256 U.S. patients with craniosynostosis. Sixty percent of patients (n = 16 510) were White, 13.8% were Hispanic/Latino, 6.2% were Black/African American, 1.3% were Asian, 0.3% were American Indian or Alaska Native, and 0.1% were Native Hawaiian or Pacific Islander. Average age at surgery was 6.36 months for White patients, 10.63 months for Black patients, and 9.18 months for Hispanic patients. Minority racial and/or ethnic status was a risk factor for delayed presentation, and increased incidence of open surgery, complication rates, hospital charges, operative time, anesthesia duration, and hospital length of stay. Government-funded health insurance was associated with delayed intervention and increased complications. CONCLUSIONS: Minority craniosynostosis patients experience delays in intervention and increased complication rates. Our findings highlight the importance of expedited and equitable referrals, screenings, and treatment, and the need for a standardized approach to investigating longitudinal demographic and outcomes data in this population.

Analyzing Linguistic Disparities in Telehealth Care Outcomes at a Multidisciplinary Craniofacial Center.

OBJECTIVE: To examine linguistic disparities between English- and Spanish-speaking patients in access to care, satisfaction, and telehealth appointment attendance. DESIGN: Retrospective study recording demographics for non-attendance analysis and conducting phone surveys assessing satisfaction with telehealth. SETTING: Data was collected between March and December 2020 at the UCSF Craniofacial Center (CFC), a multidisciplinary pediatric clinic. Patients: English- and Spanish-speaking patients with a telehealth appointment. Interventions: The CFC offered language-concordant outreach, assistance with the telehealth platform, and interpreters at all telehealth appointments. MAIN OUTCOME MEASURES: Demographics and patient-reported satisfaction with telehealth, barriers, and instruction clarity. RESULTS: Medicaid insurance was the only predictor of non-attendance. Surveys revealed that Spanish-speakers had 12.4 times the odds of lacking access to telehealth technology and 10.7 times the odds of needing help with logging on compared to English-speakers. There were no significant differences in satisfaction outcomes. CONCLUSIONS: We attribute this equity in satisfaction to our language-concordant outreach efforts.

Decrease in Prevalence of Cleft lip, Alveolus and Palate After Nationwide Introduction of the Second-Trimester Anomaly Scan in the Netherlands.

OBJECTIVE: Some studies have suggested that introducing a second-trimester anomaly scan (SAS) leads to increased rates of termination of pregnancy (TOP) in fetuses with orofacial clefts (OFCs). The aim of this study was to evaluate the impact of a nationwide introduction of SAS on the prevalence of live births with OFCs in the Netherlands. DESIGN: Retrospective cohort study. SETTING: Tertiary setting. POPULATION: Included in the study were all patients diagnosed with OFCs as recorded in the "Dutch Association for Cleft Palate Anomalies" database between 1997 and 2019. INTERVENTIONS: Patients were divided into three categories: cleft lip with or without alveolus (CL/A), cleft lip, alveolus and palate (CLAP) and cleft palate (CP) based on anatomical landmarks at the first consultation. MAIN OUTCOME MEASURES: Prevalence rates of OFCs before and after the nationwide introduction of the SAS on January 1, 2007 were compared. RESULTS: Overall, 1899 patients were diagnosed with CL/A, 2586 with CLAP and 2927 with CP. The prevalence of clefts before and after introduction of the SAS did not differ (P = 0.85). The prevalence of CL/A decreased (P = 0.04), and that of CLAP decreased (P = 0.01) and that of CP increased (P = 0.02). CONCLUSIONS: This study demonstrates a significant decrease in the prevalence of CL/A and CLAP after introduction of the SAS. However, due to an increase in CP, the prevalence of all patients born with OFCs has not changed in the Netherlands between 1997 and 2019.

Orthotic Helmet Therapy for Deformational Plagiocephaly: Stratifying Outcomes by Insurance.

OBJECTIVE: Deformational Plagiocephaly (DP) is commonly treated with cranial orthosis, or helmet therapy. A large, national study on the impact of insurance status on helmet outcomes is lacking. We assessed treatment outcomes for helmet therapy based on insurance status. DESIGN: This was a retrospective data analysis of patients referred to Cranial Technologies, Inc for helmet therapy between 2014-2020 across 21 states. PATIENTS, PARTICIPANTS: There were a total of 211,417 patients referred for helmeting, of whom 141,513 received helmet therapy. MAIN OUTCOMES MEASURES: Multivariate regression was used to assess the relationship of insurance status with post-treatment residual flattening, measured by cephalic index (CI) and cranial vault asymmetry index (CVAI), and treating provider rating of success. RESULTS: Patients with Medicaid were more likely to complete treatment with residual flattening measured by CI and CVAI when compared to patients with private insurance (OR: 1.58, CI: 1.51-1.65, p < 0.001 and OR: 1.21, CI: 1.15-1.28, p < 0.001, respectively). Providers of patients with Medicaid were more likely to give a low rating of success following treatment (OR: 3.25, CI: 2.70-3.92, p < 0.001). CONCLUSIONS: Our study investigating the impact of insurance status on helmet therapy across 21 states found that patients with Medicaid were more likely to experience residual flattening and have lower provider-rated outcomes compared to those with commercial insurance. Given significant caregiver burden posed by helmet therapy, which requires frequent visits and consistent helmet use, caregivers of patients with Medicaid may require greater support to reduce outcome disparities observed here.

A Case of Nonsyndromic Craniosynostosis in an Infant Child of Jehovah's Witness Parents: Is Surgical Correction Appropriate?

An infant with nonsyndromic craniosynostosis is brought to clinic by his Jehovah's Witness parents to discuss treatment. Five potential courses of action are discussed in the context of biomedical ethics principles. The potential conflict between parents' autonomy to make decisions for their child and the surgeon's ethical duty of beneficence to the patient is explored.

Third-party Compliance With State-Mandated Orthodontic Coverage for Cleft Palate and Craniofacial Care in California: An Insurance Claim Thematic Analysis.

BACKGROUND: California Senate Bill 630 (SB630) enacted statutorily mandated health plan coverage for orthodontic care of patients with cleft palate and craniofacial anomalies in 2009, which was effective from July 1, 2010. In this qualitative analysis, third-party compliance with SB630 in a university-based cleft and craniofacial orthodontic program is evaluated. METHODS: Privately insured patients that experienced a coverage delay or denial of orthodontic treatment for cleft lip and palate in the University of California, San Francisco Cleft and Craniofacial Orthodontic Program between July 1, 2010 and October 28, 2020 were identified. A thematic analysis of reasons for delay or denial was conducted. RESULTS: Nearly three quarters of patients experienced coverage delay and/or denials. The most common reason given was that services were not covered. CONCLUSIONS: Despite state-mandated coverage, inappropriate denials of orthodontic care for patients with cleft lip and palate by private insurers persist in California.

The First Hybrid International Educational Comprehensive Cleft Care Workshop.

OBJECTIVE: Describe the first hybrid global simulation-based comprehensive cleft care workshop, evaluate impact on participants, and compare experiences based on in-person versus virtual attendance. DESIGN: Cross-sectional survey-based evaluation. SETTING: International comprehensive cleft care workshop. PARTICIPANTS: Total of 489 participants. INTERVENTIONS: Three-day simulation-based hybrid comprehensive cleft care workshop. MAIN OUTCOME MEASURES: Participant demographic data, perceived barriers and interventions needed for global comprehensive cleft care delivery, participant workshop satisfaction, and perceived short-term impact on practice stratified by in-person versus virtual attendance. RESULTS: The workshop included 489 participants from 5 continents. The response rate was 39.9%. Participants perceived financial factors (30.3%) the most significant barrier and improvement in training (39.8%) as the most important intervention to overcome barriers facing cleft care delivery in low to middle-income countries. All participants reported a high level of satisfaction with the workshop and a strong positive perceived short-term impact on their practice. Importantly, while this was true for both in-person and virtual attendees, in-person attendees reported a significantly higher satisfaction with the workshop (28.63 ± 3.08 vs 27.63 ± 3.93; P = .04) and perceived impact on their clinical practice (22.37 ± 3.42 vs 21.02 ± 3.45 P = .01). CONCLUSION: Hybrid simulation-based educational comprehensive cleft care workshops are overall well received by participants and have a positive perceived impact on their clinical practices. In-person attendance is associated with significantly higher satisfaction and perceived impact on practice. Considering that financial and health constraints may limit live meeting attendance, future efforts will focus on making in-person and virtual attendance more comparable.

Impact of Illustrated Postoperative Instructions on Knowledge and Retention During a Cleft Lip and Palate Surgical Mission.

OBJECTIVE: To determine the impact of illustrated postoperative instructions on patient-caregiver knowledge and retention. DESIGN: Prospective study with all participants receiving an educational intervention. SETTING: Pediatric plastic surgical missions in Guatemala City, Guatemala, between 2019 and 2020. PARTICIPANTS: A total of 63 majority-indigenous Guatemalan caregivers of patients receiving cleft lip and/or palate surgery. INTERVENTION: Illustrated culturally appropriate postoperative care instructions were iteratively developed and given to caregivers who were surveyed on illustration-based and text-based information at preoperative, postoperative, and four-week follow-up time points. MAIN OUTCOME MEASURE: Postoperative care knowledge of illustration-based versus text-based information as determined by the ability to answer 11 illustration- and 8 text-based all-or-nothing questions, as well as retention of knowledge as determined by the same survey given at four weeks follow-up. RESULTS: Scores for illustration-based and text-based information both significantly increased after caregivers received the postoperative instructions (+13.30 ± 3.78 % SE, + 11.26 ± 4.81 % SE; P < .05). At follow-up, scores were unchanged for illustration-based (-3.42 ± 4.49 % SE, P > .05), but significantly lower for text-based information (-28.46 ± 6.09 % SE, P < .01). Retention of text-based information at follow-up correlated positively with education level and Spanish literacy, but not for illustration-based. CONCLUSIONS: In the setting of language and cultural barriers on a surgical mission, understanding of illustration-based and text-based information both increased after verbal explanation of illustrated postoperative instructions. Illustration-based information was more likely to be retained by patient caregivers after four weeks than text-based information, the latter of which correlated with increased education and literacy.

Racial and Ethnic Disparities in Primary Cleft Lip and Cleft Palate Repair.

OBJECTIVE: To examine the impact of race/ethnicity on timing and postoperative outcomes of primary cleft lip (CL) and cleft palate (CP) repair. DESIGN: Cross-sectional analysis of the National Surgical Quality Improvement Program Pediatric (NSQIP-P) database from 2013 to 2018. PATIENTS AND MAIN OUTCOME MEASURES: Patients under 2 years of age who underwent primary CL or CP repair were identified in the NSQIP-P. Outcomes were the timing of surgery and 30-day readmission and reoperation rates stratified by race and ethnicity. RESULTS: In total, 6021 children underwent CL and 6938 underwent CP repair. Adjusted rates of CL repair over time were 10% lower in Hispanic children (95%CI: 0.84-0.96) and 38% lower for Asian children (95%CI: 0.55-0.70) compared with White infants. CP repair rates over time were 13% lower in Black (95%CI: 0.79-0.95), 17% lower in Hispanic (95%CI: 0.77-0.89), and 53% lower in Asian children (95%CI: 0.43-0.53) than in White infants. Asian patients had the highest rates of delayed surgical repair, with 19.3% not meeting American Cleft Palate-Craniofacial Association (ACPA) guidelines for CL (P < .001) and 28.2% for CP repair (P< .001). Black and Hispanic children had 80% higher odds of readmission following primary CL repair (95%CI: 1.16-2.83 and 95%CI: 1.27-2.61, respectively). CONCLUSIONS: This study of a national database identified several racial/ethnic disparities in primary CL and CP, with reduced receipt of cleft repair over time for non-White children. Asian patients were significantly more likely to have delayed cleft repair per ACPA guidelines. These findings underscore the need to better understand disparities in cleft repair timing and postoperative outcomes.

The Impact of the Covid-19 Pandemic on Cleft Lip and Palate Service Delivery for New Families in the United Kingdom: Medical and Community Service Provider Perspectives.

OBJECTIVES: Professionals in the United Kingdom providing care to new families affected by cleft lip and/or palate (CL/P) had to adapt to ensure families' needs were met during a time of uncertainty due to Covid-19. The aims of this study were to explore the impacts of the pandemic on CL/P care provision for new families from the perspectives of professionals working in medical and community settings along with any personal impact on professionals and their reflections on the future of CL/P care. DESIGN: Semistructured interviews (n = 27) were completed about experiences from March 2020 to October 2020 with consultant cleft surgeons (n = 15), lead clinical nurse specialists (n = 8), and staff working at the Cleft Lip and Palate Association (n = 4). Transcripts were analyzed using inductive thematic analysis. RESULTS: Three themes were identified: (1) the impact of Covid-19 on the provision of cleft care in the United Kingdom, including working conditions, delays to treatment, and Covid-19 policies; (2) the impact of the pandemic on professionals' mental health, including personal distress and concerns about Covid-19 exposure; and (3) reflections on the future of CL/P care, whereby professionals expressed both hope and concern about the Covid-19 recovery effort. CONCLUSIONS: The ongoing Covid-19 pandemic has impacted CL/P service delivery for new families significantly, warranting recommendations for cohesive psychological support for families in addition to a safe and resourced recovery effort. Support for professionals is also suggested, following existing evidence-based models for providers' needs that address the difficulties of working throughout challenging times.

As implicações bioéticas da Comissão Parlamentar de Inquérito da Pandemia: o caso Prevent Senior / The bioethical implications of the Parliamentary Pandemic Inquiry Commission: the Prevent Senior case / Las implicaciones bioéticas de la Comisión Parlamentaria de Investigación de Pandemia: el caso Prevent Senior

Objetivo: discutir os desdobramentos bioéticos, ocasionados pela atuação da operadora de saúde Prevent Senior, na Comissão Parlamentar de Inquérito da Pandemia (CPI da Pandemia). Metodologia: trata-se de uma análise documental, utilizando o relatório final produzido pela CPI da Pandemia, juntamente com a revisão da abordagem bioética principialista elucidada por Tom L. Beauchamp e James F. Childress. Resultados: a pesquisa apontou que, se os fatos descritos no relatório da CPI forem confirmados após o devido processo legal, princípios bioéticos não foram observados, bem como diplomas legais infringidos. Conclusão: diante do cenário pandêmico, os preceitos bioéticos são instrumentos imprescindíveis para o enfrentamento digno e justo das adversidades em saúde.

Objective: to discuss the bioethical reverberation, caused by the performance of the health operator Prevent Senior, in the Parliamentary Inquiry Commission of the Pandemic. Methods: this is a documentary analysis using the final report prepared by the Commission and a review of the principles-based bioethical approach outlined by Tom L. Beauchamp and James F. Childress. Results: the research showed that if the facts described in the Commission's report are confirmed after due process, it is evident that bioethical principles were not followed, and legal requirements were violated. Conclusion: in the face of the pandemic scenario, bioethical principles are an essential tool to deal with health adversities in a dignified and fair manner.

Objetivo: discutir los desarrollos bioéticos, provocados por la actuación del operador de salud Prevent Senior, en la, en la Comisión Parlamentaria de Investigación de la Pandemia (CPI de la Pandemia). Metodología: se trata de un análisis documental, utilizando el informe final elaborado por el CPI de la Pandemia, junto con la revisión del enfoque bioético principialista dilucidado por Tom L. Beauchamp y James F. Childress. Resultados: la investigación apuntó que si los hechos descritos en el informe del CPI son confirmados después del debido proceso de ley, no se observaron los principios bioéticos, así como de los diplomas legales infringidos. Conclusión: ante el escenario de la pandemia, los preceptos bioéticos son instrumentos esenciales para un enfrentamiento digno y equitativo de las adversidades em salud.

Is There a Role for Comfort Care in Neonates With Severe Craniofacial Anomalies? Case Report and Review of Quality-of-Life Literature.

This article aims to determine how quality of life (QoL) is defined and assessed in cases of severe craniofacial anomalies, as well as the impact such considerations may have on the treatment of a neonate with these conditions with respect to palliative neonatal care. Our literature review found insufficient evidence to suggest that craniofacial anomalies result in consistently poor QoL. Based on these findings and in line with the current acceptable standards for the ethical care of neonates, with the exception of rare cases, resuscitative efforts should always be performed on patients with isolated craniofacial anomalies, as demonstrated in the management of this reported patient.

The Throat Pack Debate: A Review of Current Practice in UK and Ireland Cleft Centers.

INTRODUCTION: The use of throat packs during oropharyngeal surgery has long been a topic of debate among cleft surgeons. The advantage of inserting an absorbent tulle within the pharynx must be weighed against the risk of unintended retention postoperatively. Despite safety check mechanisms in place, retention may occur with potentially life-threatening consequences. We present a comprehensive review of throat pack use in all cleft units within the United Kingdom and Ireland. METHODS: All 20 cleft surgery units in the United Kingdom and Ireland were surveyed on their use of throat packs in children aged 6 months to 2 years undergoing elective cleft palate surgery. RESULTS: The response rate to the survey was 100%. Seventy-five percent of units currently use throat packs; in 40%, they are used in addition to cuffed endotracheal tubes (ETTs). Inclusion of the throat pack in the surgical swab count was perceived as the safest mechanism employed to avoid retention. 26.1% of respondents were aware of at least 1 incident of pack retention in their unit. DISCUSSION/CONCLUSION: The reported UK and Irish experience demonstrates that three-quarters of units routinely use packs. Notably, a quarter of respondents to the survey have experience of an incident of throat pack retention. Nevertheless, the majority of respondents considered the perceived risk of retaining a pack to be low. The growing use of microcuffed ETTs in UK cleft units paired with a low incidence of perioperative complications when a throat pack is not introduced might prompt cleft surgeons to review routine pharyngeal packing.

Medical debt during epidemics: A case for resolving the situation in low- and middle-income countries such as Kenya.

This paper evaluates the problem of medical debt in Kenya during the COVID-19 pandemic. The medical debt problem is compounded during pandemics such as COVID-19 when patients seek treatment and end up in insurmountable debt because illnesses related to the pandemic are not covered by the Kenyan National Health Insurance Fund (NHIF), the public health coverage body under government control. As a result, discharged patients may be detained in hospitals and dead bodies are locked away in mortuaries, until relatives and friends fundraise and clear the bills. Apart from causing vulnerability, fear, and emotional stress among the poor, this practice leads to a growing lack of trust in the healthcare system, with patients deliberately avoiding hospitals whenever they suspect they have COVID-19. The resulting vicious cycle makes healthcare more inaccessible by limiting the choices that people may have. User fees, which were introduced in all public health facilities by the Kenyan government as part of a World Bank prescription for cost-sharing, normally affect more women than men. Although Kenya has implemented a general waiver system in public hospitals for those who cannot pay their medical bills, the process of obtaining this waiver can be burdensome, demeaning, and dangerous for the health of the patients. This undermines the government's commitment to the provision of equitable and affordable health care for the citizens. In this article, the problem of medical debt in Kenya is addressed as a multi-faceted problem drawing on issues of justice and fairness, human dignity, good governance, the interplay between global and local policies, as well as politics and law. It argues that it is in the best interest of Kenya and other African countries to ensure that public health coverage covers pandemics so that the majority poor can afford and access healthcare.

The Panorama of Cleft Lip and Palate Live Birth in Brazil: Follow-up of a 10-Year Period and Inequalities in the Health System.

OBJECTIVE: To provide the prevalence and an overview of cleft lip and palate (CL/P) in the period of 2008 to 2017, as well as the profile of care provided for this condition in Brazil. DESIGN: Cross-sectional study of epidemiological character. SETTING: Brazilian government website. PARTICIPANTS: National Live Birth and Hospital Information System. INTERVENTION: Organization of the end databases and performance-based statistical analysis. MAIN OUTCOME MEASURE(S): Analysis of the prevalence of CL/P in newborns, sociodemographic condition of the mothers, surgical procedures and hospitalizations, and specialized hospitals in Brazil within a 10-year period. RESULTS: The average prevalence of CL/P in Brazil was ∼52 children per 100 000 live births in the covered period, corresponding to 1 per 1924 newborns. The presence of cleft was associated with preterm birth, being underweight, and the male gender. The highest prevalence was found in the South region, while the lowest was found in the Northeast region, with increasing rates in the North region of Brazil. The states with the highest prevalence were not those with a great number of hospitalizations and surgical procedures for live births with CL/P. CONCLUSION: In the 10-year study period, the prevalence of CL/P was 0.52 newborns per 1000 live births, a result which differs among the states of Brazil. The need to reinforce the national monitoring of the prevalence and surgical procedures of cleft patients have also emphasized the need to improve public medical care for CL/P subjects.

'Dalarinji': A flexible clinic, belonging to and for the Aboriginal people, in an Australian emergency department.

OBJECTIVE: Equity and access to high-quality healthcare for Aboriginal and Torres Strait Islander (Aboriginal) people has remained refractory for complex and multifactorial reasons, and there are sound ethical arguments for addressing this urgently. In EDs all patients who 'leave at own risk' (LAOR) or 'do not wait to be seen' (DNW) are at increased risk of readmission, morbidity or death. This also incurs additional resource costs to the health system. Aboriginal patients have high rates of DNW and LAOR. The Flexiclinic model of care was co-designed to better support the needs of Aboriginal patients in the ED and to reduce the rates of DNW and LAOR. METHODS: 'Dalarinji', or Flexiclinic, is a flexible model of care within the ED collaboratively devised with the Aboriginal Health Unit to address the major factors that influence this vulnerable cohort leaving the St Vincent's Hospital ED (SVHED) prior to being assessed or before completion of treatment. RESULTS: In the 3 months since its introduction, the Flexiclinic approach has significantly improved the quality and equity of access to medical care at SVHED for Aboriginal patients with the average summed rate of DNW and LAOR falling to 5.2% of presentations, representing a fivefold decrease in the probability of Aboriginal patients receiving incomplete care. CONCLUSION: The Flexiclinic approach has significantly improved medical care at SVHED for Aboriginal patients. It has been well received by both staff and patients and has had no adverse effects on delivery of services to other patient groups.

El proceso de muerte en la pandemia por coronavirus / O processo de morte na pandemia por coronavírus / The death process in the coronavirus pandemic

La muerte es un proceso biográfico, sociocultural y biológico que se vive de una forma individual, pero que se comparte con los seres queridos. Sabemos que morimos y al ser dependientes y relacionales otras personas participan de nuestra propia muerte. No somos seres aislados, sino que interaccionamos al convivir con los demás con quienes compartimos sentimientos y vivencias, por lo que nuestros actos se desarrollan en relación con quienes nos acompañan. Es la razón por la que, en la mayoría de las ocasiones, desterramos morir en soledad y la muerte de un amigo o de un familiar la percibimos como algo nuestro originando una cierta sensación de pérdida que, a su vez, manifestamos de forma íntima o compartida. Durante la pandemia por coronavirus, como consecuencia de la elevada tasa de contagio y el consiguiente peligro para la salud pública las autoridades sanitarias han adoptado medidas de aislamiento también en pacientes en fase terminal, por lo que se ha llevado a cabo la privación del derecho al acompañamiento y al apoyo espiritual o religioso recogido en numerosas legislaciones sobre derechos de los pacientes. La soledad se ha intentado solventar con el uso de medios electrónicos, pero esta práctica no ha sustituido el contacto físico necesario en estas situaciones. La adopción de medidas estrictas para prevenir la transmisión de la enfermedad no debe ser impedimento para facilitar un entorno compasivo durante el fallecimiento de estos pacientes.

Death is a biographical, sociocultural and biological process that is lived individually and shared with loved ones. The human being knows that he dies and as a relational and dependent living being, other people participate in his death. We are not isolated beings, but we interact living with others with whom we share feelings and experiences, so our actions are developed in relation to those who accompany us. It is the reason why, in most cases, we banish death alone without the company of our loved ones and why we perceive the death of a friend or relative as our own, causing a certain sense of loss. During the coronavirus pandemic, as a consequence of the high contagion rate and the consequent danger to public health, the authorities have adopted isolation measures also in terminal patients, for which they have been deprived of the right to accompaniment and spiritual or religious support included in legislations on the rights of patients. Solitude has been tried to solve with the use of electronic means, but this practice has not replaced the necessary physical contact in these situations. The adoption of strict measures to prevent the transmission of the disease should notbe an impediment to facilitating a compassionate environment during dying process in these patients.

A morte é um processo biográfico, sociocultural e biológico vivido individualmente, mas compartilhado com os entes queridos. Sabemos que morremos e, por sermos dependentes e relacionais, outras pessoas participam de nossa própria morte. Não somos seres isolados, mas interagimos convivendo com outras pessoas com quem compartilhamos sentimentos e experiências, por isso as nossas ações se desenvolvem em relação a quem nos acompanha. É por isso que, na maioria das vezes, evitamos morrer sozinhos, sem a companhia de nossos entes queridos, e percebemos a morte de um amigo ou familiar como nossa, causando um certo sentimento de perda que, por sua vez, manifestamos de forma íntima ou compartilhada. Durante a pandemia do coronavírus, em decorrência do alto índice de contágio e consequente perigo para a saúde pública, as autoridades sanitárias adotaram medidas de isolamento também em pacientes em fase terminal, razão pela qual foram privados do direito de acesso, acompanhamento e espiritual ou apoio religioso incluído em várias legislações sobre os direitos dos pacientes. Tem-se tentado fazer face à solidão com o uso de meios eletrônicos, mas essa prática não substitui o contato físico necessário nessas situações. A adoção de medidas estritas para prevenir a transmissão da doença não deve ser um impedimento para facilitar um ambiente compassivo durante a morte desses pacientes.