The evolution of autonomy from two cooperative specialists in fluctuating environments.

From microbes to humans, organisms perform numerous tasks for their survival, including food acquisition, migration, and reproduction. A complex biological task can be performed by either an autonomous organism or by cooperation among several specialized organisms. However, it remains unclear how autonomy and cooperation evolutionarily switch. Specifically, it remains unclear whether and how cooperative specialists can repair deleted genes through direct genetic exchange, thereby regaining metabolic autonomy. Here, we address this question by experimentally evolving a mutualistic microbial consortium composed of two specialists that cooperatively degrade naphthalene. We observed that autonomous genotypes capable of performing the entire naphthalene degradation pathway evolved from two cooperative specialists and dominated the community. This evolutionary transition was driven by the horizontal gene transfer (HGT) between the two specialists. However, this evolution was exclusively observed in the fluctuating environment alternately supplied with naphthalene and pyruvate, where mutualism and competition between the two specialists alternated. The naphthalene-supplied environment exerted selective pressure that favors the expansion of autonomous genotypes. The pyruvate-supplied environment promoted the coexistence and cell density of the cooperative specialists, thereby increasing the likelihood of HGT. Using a mathematical model, we quantitatively demonstrate that environmental fluctuations facilitate the evolution of autonomy through HGT when the relative growth rate and carrying capacity of the cooperative specialists allow enhanced coexistence and higher cell density in the competitive environment. Together, our results demonstrate that cooperative specialists can repair deleted genes through a direct genetic exchange under specific conditions, thereby regaining metabolic autonomy.

A circuit for secretion-coupled cellular autonomy in multicellular eukaryotic cells.

Cancers represent complex autonomous systems, displaying self-sufficiency in growth signaling. Autonomous growth is fueled by a cancer cell's ability to "secrete-and-sense" growth factors (GFs): a poorly understood phenomenon. Using an integrated computational and experimental approach, here we dissect the impact of a feedback-coupled GTPase circuit within the secretory pathway that imparts secretion-coupled autonomy. The circuit is assembled when the Ras-superfamily monomeric GTPase Arf1, and the heterotrimeric GTPase Giαßγ and their corresponding GAPs and GEFs are coupled by GIV/Girdin, a protein that is known to fuel aggressive traits in diverse cancers. One forward and two key negative feedback loops within the circuit create closed-loop control, allow the two GTPases to coregulate each other, and convert the expected switch-like behavior of Arf1-dependent secretion into an unexpected dose-response alignment behavior of sensing and secretion. Such behavior translates into cell survival that is self-sustained by stimulus-proportionate secretion. Proteomic studies and protein-protein interaction network analyses pinpoint GFs (e.g., the epidermal GF) as key stimuli for such self-sustenance. Findings highlight how the enhanced coupling of two biological switches in cancer cells is critical for multiscale feedback control to achieve secretion-coupled autonomy of growth factors.

Achieving Enteral Autonomy in Children with Intestinal Failure Following Inpatient Admission: A Case Series.

We describe cases of intestinal failure wherein inpatient admission was critical toward enteral autonomy. We performed a retrospective chart review of 6 children with long-term parenteral nutrition dependence who were weaned from parenteral nutrition following admission. Admissions included feeding and medication titration, interdisciplinary care, and home parenteral nutrition team consultation.

Unraveling GRIA1 neurodevelopmental disorders: Lessons learned from the p.(Ala636Thr) variant.

Ionotropic glutamate receptors (iGluRs), specifically α-amino-3-hydroxy-5-methyl-4-isoxazole propionic acid receptors (AMPARs), play a crucial role in orchestrating excitatory neurotransmission in the brain. AMPARs are intricate assemblies of subunits encoded by four paralogous genes: GRIA1-4. Functional studies have established that rare GRIA variants can alter AMPAR currents leading to a loss- or gain-of-function. Patients affected by rare heterozygous GRIA variants tend to have family specific variants and only few recurrent variants have been reported. We deep-phenotyped a cohort comprising eight unrelated children and adults, harboring a recurrent and well-established disease-causing GRIA1 variant (NM_001114183.1: c.1906G>A, p.(Ala636Thr)). Recurrent symptoms included motor and/or language delay, mild-severe intellectual disability, behavioral and psychiatric comorbidities, hypotonia and epilepsy. We also report challenges in social skills, autonomy, living and work situation, and occupational levels. Furthermore, we compared their clinical manifestations in relation to those documented in patients presenting with rare heterozygous variants at analogous positions within paralogous genes. This study provides unprecedented details on the neurodevelopmental outcomes, cognitive abilities, seizure profiles, and behavioral abnormalities associated with p.(Ala636Thr) refining and broadening the clinical phenotype.

Gender differences in autonomy and performance assessments in a national cohort of vascular surgery trainees.

OBJECTIVE: Gender disparities in surgical training and assessment are described in the general surgery literature. Assessment disparities have not been explored in vascular surgery. We sought to investigate gender disparities in operative assessment in a national cohort of vascular surgery integrated residents (VIRs) and fellows (VSFs). METHODS: Operative performance and autonomy ratings from the Society for Improving Medical Professional Learning (SIMPL) application database were collected for all vascular surgery participating institutions from 2018 to 2023. Logistic generalized linear mixed models were conducted to examine the association of faculty and trainee gender on faculty and self-assessment of autonomy and performance. Data were adjusted for post-graduate year and case complexity. Random effects were included to account for clustering effects due to participant, program, and procedure. RESULTS: One hundred three trainees (n = 63 VIRs; n = 40 VSFs; 63.1% men) and 99 faculty (73.7% men) from 17 institutions (n = 12 VIR and n = 13 VSF programs) contributed 4951 total assessments (44.4% by faculty, 55.6% by trainees) across 235 unique procedures. Faculty and trainee gender were not associated with faculty ratings of performance (faculty gender: odds ratio [OR], 0.78; 95% confidence interval [CI], 0.27-2.29; trainee gender: OR, 1.80; 95% CI, 0.76-0.43) or autonomy (faculty gender: OR, 0.99; 95% CI, 0.41-2.39; trainee gender: OR, 1.23; 95% CI, 0.62-2.45) of trainees. All trainees self-assessed at lower performance and autonomy ratings as compared with faculty assessments. However, women trainees rated themselves significantly lower than men for both autonomy (OR, 0.57; 95% CI, 0.43-0.74) and performance (OR, 0.40; 95% CI, 0.30-0.54). CONCLUSIONS: Although gender was not associated with differences in faculty assessment of performance or autonomy among vascular surgery trainees, women trainees perceive themselves as performing with lower competency and less autonomy than their male colleagues. These findings suggest utility for exploring gender differences in real-time feedback delivered to and received by trainees and targeted interventions to align trainee self-perception with actual operative performance and autonomy to optimize surgical skill acquisition.

Patient autonomy and shared decision-making in the context of clinical trial participation.

AIMS: This study aimed to explore how incorporating shared decision-making (SDM) can address recruitment challenges in clinical trials. Specifically, it examines how SDM can align the trial process with patient preferences, enhance patient autonomy and increase active patient participation. Additionally, it identifies potential conflicts between SDM and certain clinical trial aspects, such as randomization or blinding, and proposes solutions to mitigate these issues. MATERIALS AND METHODS: We conducted a comprehensive review of existing literature on patient recruitment challenges in clinical trials and the role of SDM in addressing these challenges. We analysed case studies and trial reports to identify common obstacles and assess the effectiveness of SDM in improving patient accrual. Additionally, we evaluated three proposed solutions: adequate trial design, communication skill training and patient decision aids. RESULTS: Our review indicates that incorporating SDM can significantly enhance patient recruitment by promoting patient autonomy and engagement. SDM encourages physicians to adopt a more open and informative approach, which aligns the trial process with patient preferences and reduces psychological barriers such as fear and mental stress. However, implementing SDM can conflict with elements such as randomization and blinding, potentially complicating trial design and execution. DISCUSSION: The desire for patient autonomy and active engagement through SDM may clash with traditional clinical trial methodologies. To address these conflicts, we propose three solutions: redesigning trials to better accommodate SDM principles, providing communication skill training for physicians and developing patient decision aids. By focussing on patient wishes and emotions, these solutions can integrate SDM into clinical trials effectively. CONCLUSION: Shared decision-making provides a framework that can promote patient recruitment and trial participation by enhancing patient autonomy and engagement. With proper implementation of trial design modifications, communication skill training and patient decision aids, SDM can support rather than hinder clinical trial execution, ultimately contributing to the advancement of evidence-based medicine.

Occupational therapy in the management of haemophilia patients: A scoping review.

BACKGROUND: Haemophilia is a haematological disease, although most haemorrhages occur in the locomotor system. Patients are physically disabled from an early age and have a poorer perception of quality of life. In the day-to-day lives of patients and their families, psychosocial well-being, the disease's physical, personal, and social impact, as well as work-related problems are the most complicated aspects of the disease that need to be addressed. OBJECTIVE: To identify the role of occupational therapy in managing patients with haemophilia and to analyse the therapeutic potential of occupational therapy in treating these patients. METHODS: A scoping review was conducted to identify the role of occupational therapy in managing patients with haemophilia and to analyse the therapeutic potential of occupational therapy in treating these patients. The review was registered in the international registry PROSPERO (Id: CRD42022319637). The databases consulted were SCOPUS, PubMed, PsycINFO, Web of Science and Science Direct, including all studies published until 14 August 2023. RESULTS: No single study was found that specifically developed an occupational therapy intervention for patients with haemophilia. Measurement instruments have been identified, specific for patients with haemophilia and generic, that can be useful for the functional evaluation of these patients in the occupational therapy approach. Different studies showed the importance of multidisciplinary treatment, including occupational therapy. CONCLUSIONS: The use of occupational therapy could be effective in improving autonomy and quality of life in haemophilia patients. Therefore, it is of paramount importance to conduct research studies within the field of occupational therapy.

Physician awareness of patients' preferred level of involvement in decision-making at the initial urogynecology visit: a randomized trial.

BACKGROUND: Studies have shown up to a 40% discordance between patients' preferred roles in decision-making before and their perceived roles after their visit. This can negatively affect patients' experiences; interventions to minimize this discordance may significantly improve patient satisfaction. OBJECTIVE: We aimed to determine whether physicians' awareness of patients' preferred involvement in decision-making before their initial urogynecology visit affects patients' perceived level of involvement after their visit. STUDY DESIGN: This randomized controlled trial enrolled adult English-speaking women presenting for their initial visit at an academic urogynecology clinic from June 2022 to September 2022. Before the visit, participants completed the Control Preference Scale to determine the patient's preferred level of decision-making: active, collaborative, or passive. The participants were randomized to either the physician team being aware of their decision-making preference before the visit or usual care. The participants were blinded. After the visit, participants again completed a Control Preference Scale and the Patient Global Impression of Improvement, CollaboRATE, patient satisfaction, and health literacy questionnaires. Fisher exact, logistic regression, and generalized estimating equations were used. Based on a 21% difference in preferred and perceived discordance, we calculated the sample size to be 50 patients in each arm to achieve 80% power. RESULTS: Women (n=100) with a mean age of 52.9 years (standard deviation=15.8) participated in the study. Most participants identified as White (73%) and non-Hispanic (70%). Before the visit, most women preferred an active role (61%) and few preferred a passive role (7%). There was no significant difference between the 2 cohorts in the discordance between their pre- and post-Control Preference Scale responses (27% vs 37%; P=.39) or whether their symptoms were much better or very much better following the visit (18% vs 37%; P=.06). However, when asked whether they were completely satisfied with the visit, those assigned to the physician awareness cohort reported higher satisfaction than those in the treatment as usual cohort (100% vs 90%; P=.03). CONCLUSION: Although there was no significant decrease in discordance between the patient's desired and perceived level of decision-making following physician awareness, it had a significant effect on patient satisfaction. All patients whose physicians were aware of their preferences reported complete satisfaction with their visit. Although patient-centered care does not always entail meeting all of the patients' expectations, the mere understanding of their preferences in decision-making can lead to complete patient satisfaction.

The ethics of induction of labor at 39 weeks in low-risk nulliparas in research and clinical practice.

The "A Randomized Trial of Induction Versus Expectant Management" trial (ARRIVE trial) published in 2018 suggested that induction of labor can be considered a "reasonable option" for low-risk nulliparous women at ≥39 weeks of gestation. The study results led some professional societies to endorse the option for elective induction of labor at 39 weeks of gestation in low-risk nulliparas, and this has begun to change obstetrical practice. The ARRIVE trial provided valuable information supporting the benefits of induction of labor; however, the trial is insufficient to serve as the primary justification for widespread elective induction of labor at 39 weeks of gestation in low-risk nulliparas because of concerns about external validity. Thus, the French ARRIVE trial was designed to test the hypothesis in a different setting that elective induction of labor at 39 weeks of gestation in low-risk nulliparas leads to a lower cesarean delivery rate than expectant management. This ongoing trial has been criticized as "pseudoscientific" and telling "women where, when, and how to give birth." We reject these allegations and extensively examine the ethical framework that should govern clinical and research interventions, including elective induction of labor at 39 weeks of gestation in low-risk nulliparas. This study aimed to discuss the ethical issues that emerge from randomized trials of elective induction of labor at 39 weeks of gestation in low-risk nulliparas and the ethics of the clinical practice itself. The analysis of existing evidence shows the importance of further research on induction of labor at 39 weeks of gestation in low-risk women. Certain aspects of research ethics in this area, particularly the consent of pregnant women in a context where autonomy remains fragile, call for vigilance. In addition, we emphasize that childbirth is not only a medical object but also a social phenomenon that cannot be regarded only from the perspective of a health risk to be managed by clinical research. Further research on this issue is needed to allow pregnant women to make informed decisions, and the results should be integrated with social issues. The perspective of women is required in constructing, evaluating, and implementing medical interventions in childbirth, such as induction of labor at 39 weeks of gestation.

Why Not This Case? Differences Between Resident and Attending Operative Cases at Teaching Hospitals.

INTRODUCTION: Previous studies have focused on outcomes pertaining to resident operative autonomy, but there has been little academic work examining the types of patients and cases where autonomy is afforded. We sought to describe the differences between surgical patient populations in teaching cases where residents are and are not afforded autonomy. METHODS: We examined all general and vascular operations at Veterans Affairs teaching hospitals from 2004 to 2019 using Veterans Affairs Surgical Quality Improvement Program. Level of resident supervision is prospectively recorded by the operating room nurse at the time of surgery: attending primary (AP): the attending performs the case with or without a resident; attending resident (AR): the resident performs the case with the attending scrubbed; resident primary (RP): resident operating with supervising attending not scrubbed. Resident (R) cases refer to AR + RP. Patient demographics, comorbidities, level of supervision, and top cases within each group were evaluated. RESULTS: A total of 618,578 cases were analyzed; 154,217 (24.9%) were AP, 425,933 (68.9%) AR, and 38,428 (6.2%) RP. Using work relative value unit as a surrogate for complexity, RP was the least complex compared to AP and AR (10.4/14.4/14.8, P < 0.001). RP also had a lower proportion of American Society of Anesthesiologists 3 and 4 + 5 patients (P < 0.001), were younger (P < 0.001), and generally had lower comorbidities. The most common RP cases made up a higher proportion of all RP cases than they did for AP/AR and demonstrated several core competencies (hernia, cholecystectomy, appendectomy, amputation). R cases, however, were generally sicker than AP cases. CONCLUSIONS: In the small proportion of cases where residents were afforded autonomy, we found they were more focused on the core general surgery cases on lower risk patients. This selection bias likely demonstrates appropriate attending judgment in affording autonomy. However, this cohort consisted of many "sicker" patients and those factors alone should not disqualify resident involvement.

The association between Afghan Women's autonomy and experience of domestic violence, moderated by education status.

This study examines the association between Afghan women's autonomy (WA) and experience of domestic violence (physical, sexual, and emotional) in the previous 12 months, and whether this association is moderated by education status. We used data from 19,098 married women aged 15-49, who completed the 2015 Afghanistan Demographic and Health Survey- the first and only national survey administered in the country. WA was measured across 5 domains (healthcare, visiting family, household purchases, spending, and contraceptive use). Adjusted odds ratios and 95% confidence intervals for the association between domestic violence in the past 12 months (any vs. none) and WA were estimated using multiple logistic regression and adjusted for covariates. Interaction terms between education status and WA were also assessed. We found that the experience of physical, emotional, and sexual violence was 45% 30%, and 7%, and at least 1 in 2 had no autonomy. After adjustment, compared to women without autonomy, WA in healthcare decisions, spending, visiting families, and household purchases significantly decreased the odds of physical violence. Similarly, WA in healthcare decisions and spending significantly decreased the odds of sexual violence. Lastly, WA in spending and not using contraception was associated with reduced odds of emotional violence. We also found a greater protective effect of WA in visiting family among women with any education across each domestic violence outcome. These findings provide insights into areas for intervention to address gender inequalities (Sustainable Development Goal 3) and mitigate adverse health outcomes for mothers and their children (Goal 5).

The Shoeshine Stand and the Renaissance of Primary Care.

Over the past century, family physicians have moved from small independently owned practices, many of them solo, to being employed by large hospital systems, corporate entities, or health systems. Today, almost three-quarters of all physicians are employed and the highest percentage of employed physicians are family physicians.This essay contrasts the elements of independent practice with employed practice as part of what has been lost in the past half century, but what might be regained if physicians demanded more autonomy and control over their practices.

Challenges Addressing Lung Cancer Screening for Patients With Multimorbidity in Primary Care: A Qualitative Study.

PURPOSE: Many individuals who are eligible for lung cancer screening have comorbid conditions complicating their shared decision-making conversations with physicians. The goal of our study was to better understand how primary care physicians (PCPs) factor comorbidities into their evaluation of the risks and benefits of lung cancer screening and into their shared decision-making conversations with patients. METHODS: We conducted semistructured interviews by videoconference with 15 PCPs to assess the extent of shared decision-making practices and explore their understanding of the intersection of comorbidities and lung cancer screening, and how that understanding informed their clinical approach to this population. RESULTS: We identified 3 themes. The first theme was whether to discuss or not to discuss lung cancer screening. PCPs described taking additional steps for individuals with complex comorbidities to decide whether to initiate this discussion and used subjective clinical judgment to decide whether the conversation would be productive and beneficial. PCPs made mental assessments that factored in the patient's health, life expectancy, quality of life, and access to support systems. The second theme was that shared decision making is not a simple discussion. When PCPs did initiate discussions about lung cancer screening, although some believed they could provide objective information, others struggled with personal biases. The third theme was that ultimately, the decision to be screened was up to the patient. Patients had the final say, even if their decision was discordant with the PCP's advice. CONCLUSIONS: Shared decision-making conversations about lung cancer screening differed substantially from the standard for patients with complex comorbidities. Future research should include efforts to characterize the risks and benefits of LCS in patients with comorbidities to inform guidelines and clinical application.

Communicating the diagnosis of spinal muscular atrophy in endogamous vs. non-endogamous regions.

INTRODUCTION: The high prevalence of endogamy, or inbreeding, in northeastern Brazil, is due to historical and cultural factors, with large families living in cities far from the coast and subject to low socioeconomic and infrastructure levels. This breeding practice results in low genetic variability with an increased prevalence of rare autosomal recessive and neurodegenerative diseases, such as spinal muscular atrophy (SMA). OBJECTIVE: Understanding the impact of communicating the diagnosis of SMA on the mental health of patients and their families and the differences between the Northeast (endogamous region) and the other regions of Brazil (non-endogamous ones). METHODS: Cross-sectional study obtained through a structured questionnaire about the moment of receiving the SMA diagnosis, containing the Impact of Event Scale-Revised. RESULTS AND DISCUSSION: The sample consisted of 100 volunteers from all regions of Brazil, 47 patients diagnosed with SMA and 53 family members present at the time of the diagnosis. There was a predominance of females (83%) and homogeneity between the groups for the variables gender, age, color, education, religion, and SMA subtype (1, 2, 3, and 4). The Northeast region, representing 43% of the sample, despite being less economically favored, showed greater satisfaction with medical care and inclusion in health services, with less self-reported psychological trauma and fewer signs of post-traumatic stress disorder (PTSD) related to the moment of receiving the diagnosis. The non-endogamous regions, in turn, reported the presence of strong waves of emotion, sleep problems, feelings of irritability, anger, and the presence of bad thoughts related to this situation. CONCLUSION: The feeling of inclusion in health services and satisfaction with medical care in the endogamous region had a positive impact on the mental health of those involved, reducing psychological trauma and signs of PTSD arising from the communication of the SMA diagnosis.

The place for people in rewilding.

Rewilding, although controversial, is increasingly presented as humanity's best hope of addressing the global biodiversity crisis, but it remains unclear how restoring nonhuman autonomy affects people's relationships with nature. We conceptualized 3 human-nature relationships (HNRs) that could occur when restoring nonhuman autonomy: human-nature dichotomy, human-nature compromise, and human-nature mutualism. Through 51 interviews, we then empirically tested the occurrence of these HNRs across diverse actors living and working in 2 longstanding British rewilding initiatives to better understand the place for people in rewilding. Actors' HNRs aligned with the 3 conceptual framings, but these relationships were complex. Individuals often demonstrated multiple perspectives that transcended conventional actor categorization. The tripartite framing also revealed conflicting values across and within individuals, resulting in pluralistic HNRs. Our work adds to the theory and practice surrounding the place for people in rewilding by cautioning against a single preferred HNR when restoring nonhuman autonomy and advocating that a diversity of human interactions with nature should be integrated into the global rewilding movement.

El lugar de las personas en la renaturalización Resumen Aunque la renaturalización es controversial, se presenta cada vez más como la mejor esperanza para que la humanidad aborde la crisis mundial de biodiversidad, aunque todavía no está claro el efecto de la restauración de la autonomía no humana sobre las relaciones entre las personas y la naturaleza. Conceptualizamos tres relaciones humanidad­naturaleza (RHN) que podrían ocurrir al restaurar la autonomía no humana: dicotomía, equilibrio y mutualismo, todas entre los humanos y la naturaleza. Realizamos 51 entrevistas para probar de forma empírica la ocurrencia de estas RHN con varios actores que viven y trabajan dentro de las dos iniciativas británicas de renaturalización más antiguas y así entender mejor el lugar de las personas en la renaturalización. Las HNR de los actores se alinearon con los tres marcos conceptuales, aunque estas relaciones fueron complejas. Los individuos frecuentemente mostraron tener varias perspectivas que trascendían la categoría de los actores. El marco tripartito también reveló valores conflictivos entre y en los individuos, lo que resultó en RHN pluralistas. Nuestro trabajo suma a la teoría y práctica en torno al lugar de la gente en la renaturalización con la prevención de una sola relación humanidad­naturaleza preferida cuando se restaura la autonomía no humana y con la recomendación de que la diversidad de interacciones humanas con la naturaleza debería integrarse al movimiento mundial de renaturalización.

Longitudinal associations between lie evaluations and frequency: The moderating role of age.

While previous studies have demonstrated correlations between children and adolescents' evaluations of lies and lie-telling behaviors, the temporal order of these associations over time and changes across this developmental period remain unexamined. The current study examined longitudinal associations among children and adolescents' (N = 1128; Mage = 11.54, SD = 1.68, 49.80% male, and 83.6% white) evaluations of lies to parents for autonomy and lie-telling frequency to parents and friends. Autoregressive cross-lagged analysis revealed longitudinal associations moderated by age. Among children, evaluations of lies predicted greater lie-telling rates over time. Conversely, among adolescents, lie-telling frequency predicted lie evaluations over time, and evaluations predicted lying to parents over time. These results demonstrate a novel developmental pattern of the associations between moral evaluations of lies and lie-telling. RESEARCH HIGHLIGHTS: Children and adolescents' evaluations of lie-telling and lie-telling frequency were associated longitudinally, but the direction of this association was moderated by age. Among children, more positive lie evaluations predicted greater lie-telling to parents and friends over time. Among adolescents, more positive lie evaluations predicted lying more often to parents over time; lying more to parents and friends predicted more positive evaluations over time. These findings suggest a novel developmental pattern regarding the temporal order of the association between evaluations of lie-telling and lie-telling frequency.

Parental communicative input as a protective factor in Bangladeshi families living in poverty: A multi-dimensional perspective.

Studies from high-income populations have shown that stimulating, supportive communicative input from parents promote children's cognitive and language development. However, fewer studies have identified specific features of input supporting the healthy development of children growing up in low- or middle-income countries. The current study proposes and tests a multi-dimensional framework for understanding whether and how caregiver communicative input mediates the associations between socio-economic conditions and early development. We also examine how caregiver conceptual scaffolding and autonomy support uniquely and synergistically explain variation in child outcomes. Participants were 71 Bangladeshi families with five-year-olds who were exposed to a range of biological and psychosocial hazards from birth. Caregiver-child interactions during snack sharing and semi-structured play were coded for caregiver conceptual scaffolding, autonomy support, and child engagement. Findings indicate that the two dimensions of input were correlated, suggesting that caregivers who provided richer conceptual scaffolds were simultaneously more supportive of children's autonomy. Notably, conceptual scaffolding and autonomy support each mediated associations between maternal education and child verbal intelligence quotient (IQ) scores. Further, caregivers who supported greater autonomy in their children had children who participated in conversations more actively, and these children in turn had higher performance IQ scores. When considered simultaneously, conceptual scaffolding was associated with verbal IQ over and above autonomy support, whereas autonomy support related to child engagement, controlling for conceptual scaffolding. These findings shed new light on how environmental factors may support early development, contributing to the design of family-centered, culturally authentic interventions. A video abstract of this article can be viewed at https://youtu.be/9v_8sIv7ako RESEARCH HIGHLIGHTS: Studies from high-income countries have identified factors mitigating the impacts of socio-economic risks on development. Such research is scarce in low- and middle-income countries. The present study conceptualized and evaluated caregiver communicative input in Bangladeshi families along two interrelated yet distinct dimensions: conceptual scaffolding and autonomy support. Conceptual scaffolding and autonomy support individually mediated associations between maternal education and child verbal IQ, shedding light on protective factors in families living in poverty. Parents providing richer conceptual scaffolds were simultaneously more supportive of children's autonomy. However, the two dimensions each related to cognition and language through unique pathways.

Waiving the consent requirement to mitigate bias in observational precision medicine research.

Consent bias is a type of selection bias in biomedical research where those consenting to the research differ systematically from those not consenting. It is particularly relevant in precision medicine research because the complexity of these studies prevents certain subgroups from understanding, trusting, and consenting to the research. Because consent bias distorts research findings and causes inequitable distribution of research benefits, scholars propose two types of schemes to reduce consent bias: reforming existing consent models and removing the consent requirement altogether. This study explores the possibility of waiving consent in observational studies using existing data, because they involve fewer risks to participants than clinical trials if privacy safeguards are strengthened. It suggests that data protection mechanisms such as security enhancement and data protection impact assessment should be conducted to protect data privacy of participants in observational studies without consent.

Evaluation of social inclusion in Brazilian adult women with epilepsy: Perception of stigma and quality of life.

Epilepsy is a chronic disease characterized by recurrent epileptic seizures that can affect the perception of stigma and compromise the quality of life of those living with it. In addition, sociodemographic factors such as employment and maintaining a job, education, and the autonomy to drive vehicles are often impaired. OBJECTIVE: To assess the social inclusion of adult women with epilepsy in relation to the perception of stigma and quality of life, and the clinical aspects of the disease. METHODOLOGY: Data from 70 adult Brazilian women with epilepsy regarding aspects related to their social inclusion were verified. Such data were linked to clinical aspects and scores from the questionnaires: Quality of Life in Epilepsy Inventory 31 (QOLIE-31) and the Epilepsy Stigma Scale (ESS), with a significance level of p < 0.05. RESULTS: Average age of 45.5 years, 40 (57.1 %) women were divorced/single/widowed, 31 (44.3 %) women had less than 10 years of formal education, 32 (45.7 %) women had no income, and 57 (81.4 %) did not have a driver's license. The age at the time of the first seizure was 18 years, the seizures were focal in 46 (65.7 %) cases, and 26 (37.1 %) cases were seizure-free in the last year. A high number of women reported that the diagnosis of epilepsy negatively influenced aspects of autonomy such as the possession of a driver's license and going out alone. Longer duration of epilepsy was associated with lower education, not having children, and lower scores on the QOLIE-31. Higher scores on the QOLIE-31 were correlated with lower frequency of seizures and with the age at the time of the first seizure. Values in the dimension - energy and fatigue of the QOLIE-31 were significantly lower in the group with less independence compared to the other two groups with more independence, in latent class analyses (ANOVA, adjusted for age 42.1 ± 35.6 vs 57.2 ± 28.4 vs 73.9 ± 23.8, p = 0.0295). DISCUSSION: Clinical aspects of epilepsy and having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy. CONCLUSION: It was observed that having a partner, autonomy, and independence such as driving vehicles are factors that contribute to social inclusion and to the perception of a better quality of life for adult women with epilepsy.

Improved long-term outcome of children with congenital diarrhea followed by an intestinal rehabilitation program.

BACKGROUND: Long-term outcomes of congenital diarrheas and enteropathies (CODE) are poorly described. We evaluated the morbidity and mortality of children with CODE followed by an intestinal rehabilitation program (IRP) compared to children with short bowel syndrome (SBS). METHODS: Matched case-control study of children with intestinal failure (IF) due to CODE (diagnosed between 2006 and 2020; N = 15) and SBS (N = 42), matched 1:3, based on age at diagnosis and duration of parenteral nutrition (PN). Nutritional status, growth, and IF-related complications were compared. Survival and enteral autonomy were compared to a nonmatched SBS cohort (N = 177). RESULTS: Fifteen CODE patients (five males, median age 3.2 years) were followed for a median of 2.9 years. Eleven children were alive at the end of the follow-up, and two achieved enteral autonomy. The CODE group had higher median PN fluid and calorie requirements than their matched SBS controls at the end of the follow-up (83 vs. 45 mL/kg/day, p = 0.01; 54 vs. 30.5 kcal/kg/day, p < 0.01), but had similar rates of growth parameters, intestinal failure associated liver disease, central venous catheter complications and nephrocalcinosis. Kaplan-Meier analyses of 10-year survival and enteral autonomy were significantly lower in CODE patients compared to the nonmatched SBS population (60% vs. 89% and 30% vs. 87%, respectively; log-rank p < 0.008). CONCLUSIONS: Despite higher PN needs in CODE, rates of IF complications were similar to matched children with SBS. Enteral autonomy and survival rates were lower in CODE patients. Treatment by IRP can mitigate IF-related complications and improve CODE patient's outcome.