The FOXP3+ Pro-Inflammatory T Cell: A Potential Therapeutic Target in Crohn's Disease.

BACKGROUND & AIMS: The incidence of Crohn's disease (CD) continues to increase worldwide. The contribution of CD4+ cell populations remains to be elucidated. We aimed to provide an in-depth transcriptional assessment of CD4+ T cells driving chronic inflammation in CD. METHODS: We performed single-cell RNA-sequencing in CD4+ T cells isolated from ileal biopsies of patients with CD compared with healthy individuals. Cells underwent clustering analysis, followed by analysis of gene signaling networks. We overlapped our differentially expressed genes with publicly available microarray data sets and performed functional in vitro studies, including an in vitro suppression assay and organoid systems, to model gene expression changes observed in CD regulatory T (Treg) cells and to test predicted therapeutics. RESULTS: We identified 5 distinct FOXP3+ regulatory Treg subpopulations. Tregs isolated from healthy controls represent the origin of pseudotemporal development into inflammation-associated subtypes. These proinflammatory Tregs displayed a unique responsiveness to tumor necrosis factor-α signaling with impaired suppressive activity in vitro and an elevated cytokine response in an organoid coculture system. As predicted in silico, the histone deacetylase inhibitor vorinostat normalized gene expression patterns, rescuing the suppressive function of FOXP3+ cells in vitro. CONCLUSIONS: We identified a novel, proinflammatory FOXP3+ T cell subpopulation in patients with CD and developed a pipeline to specifically target these cells using the US Food and Drug Administration-approved drug vorinostat.

Predicting attachment in Portuguese infants born very or extremely preterm: Understanding the roles of infant regulatory behavior, maternal sensitivity, and risk factors.

A growing body of research shows that early attachment relationships are foundational for children's later developmental and psychosocial outcomes. However, findings are mixed regarding whether preterm birth predicts later attachment, but insecurity is generally more prevalent among infants at higher medical and/or social/familial risk. This longitudinal study aimed to identify specific relational, familial/demographic, and perinatal predictors of attachment in a sample of 63 Portuguese infants born very or extremely preterm (VEPT, <32 gestational weeks) and their mothers from diverse socioeconomic backgrounds. One-third of the mothers had social/family risk factors (e.g., single parent, immigrant, unemployed, low education, and/or low income). At 3 months (corrected age), dyads were observed during social interaction in the Face-to-Face Still-Face paradigm (FFSF) and during free play. At 12 months, mother-infant dyads were observed in Ainsworth's Strange Situation. Over half (58.7%) of the infants were classified as insecurely attached. Social-Positive Oriented regulatory behavior pattern, higher maternal sensitivity, higher infant cooperation during free play, number of siblings and an absence of social/family risk factors were associated with attachment security. Perinatal variables were unrelated to attachment. Findings indicate that both relational and social contextual factors contribute to attachment in this biologically vulnerable sample.

Un creciente cuerpo investigativo muestra que las relaciones afectivas tempranas son fundamentales para posteriores resultados de desarrollo y sicosociales de los niños. Sin embargo, los resultados son variados acerca de si el nacimiento prematuro predice la afectividad posterior, pero la inseguridad es generalmente más prevalente entre infantes bajo más alto riesgo médico y/o social/familiar. Este estudio longitudinal se propuso identificar factores específicos de predicción de la afectividad, relacionales, familiar/demográficos y perinatales en un grupo muestra de 63 infantes portugueses nacidos muy o extremadamente prematuros (VEPT, < 32 semanas gestacionales) y sus madres de diversos niveles socioeconómicos. Un tercio de las madres tenían factores de riesgo social/familiar (v.g. madre soltera, inmigrante, desempleada, de baja educación y/o de bajos recursos económicos). A los tres meses (edad corregida), se les observó a las díadas durante la interacción social en el paradigma de Cara a Cara y Rostro Inmutable (FFSF) y durante el juego libre. A los 12 meses, se les observó a las díadas madre-infante por medio de la Situación Extraña de Ainsworth. Se clasificó más de la mitad (58.7%) de los infantes como afectivamente inseguros. Entre los factores de predicción de la afectividad segura se incluyó un patrón de conducta regulatoria con orientación social positiva durante FFSF, una sensibilidad materna más alta y la cooperación del infante durante el juego libre, así como la ausencia de factores de riesgo sociales/familiares. Las variables perinatales no estuvieron relacionadas con la afectividad. Los resultados indican que los factores contextuales, tanto relacionales como sociales contribuyen a la afectividad en este grupo biológicamente vulnerable.

Multiple heterochromatin diversification events in the genome of fungus-farming ants: insights from repetitive sequences.

A substantial portion of the eukaryotic genome includes repetitive DNA, which is important for its stability, regulation, and architecture. Fungus-farming ant genomes show remarkable structural rearrangement rates that were necessary for the establishment of their agriculture-based lifestyle, highlighting the relevance of this peculiar group in understanding the repetitive portion of ant genome. Chromosomal banding studies are in accordance with genomic data because they show that repetitive heterochromatic sequences of basal and derivative Attina species are GC-rich, an uncommon trait in Formicidae. To understand the evolutionary dynamics of heterochromatin in Attina, we compared GC-rich heterochromatin patterns between the Paleoattina and Neoattina clades of this subtribe. To this end, we hybridized the Mrel-C0t probe (highly and moderately repetitive DNA) obtained from Mycetomoellerius relictus, Neoattina with GC-rich heterochromatin, in karyotypes of Paleoattina and Neoattina species. Additionally, we mapped the repetitive sequences (GA)15 and (TTAGG)6 in species of the two clades to investigate their organization and evolutionary patterns in the genome of Attina. The Mrel-C0t probe marked the heterochromatin in M. relictus, in other Mycetomoellerius spp., and in species of Mycetarotes, Cyphomyrmex, and Sericomyrmex (Neoattina). In Mycetomoellerius urichii, only pericentromeric heterochromatin was marked with Mrel-C0t. No marking was observed in Paleoattina species or in Atta and Acromyrmex (Neoattina). These results indicated that different evolutionary events led to heterochromatin differentiation in Attina. The most likely hypothesis is that GC-rich heterochromatin arose in the common ancestor of the two clades and accumulated various changes throughout evolution. The sequences (GA)15 and (TTAGG)6 located in euchromatin and telomeres, respectively, showed more homogeneous results among the species.

Cumulative Risk Exposure and Social Isolation as Correlates of Carer and Child Mental Health During the COVID-19 Pandemic: An Online Study with Families from Various Europeans Countries.

This study adopted a cumulative risk approach to examine the relations between various domains of risk factors (i.e., social isolation and home confinement, other pandemic-related risk factors, and pre-existing psychosocial risk factors) and carers' and children's mental health during the first wave of the COVID-19 pandemic in Europe. The sample consisted of 1475 carers of 6- to 16-year-old children and adolescents residing in five European countries (Portugal, United Kingdom, Romania, Spain, and The Netherlands) who completed an online survey. The results showed that each of the three domains of adversity accounted for unique variation in carers' and children's mental health outcomes. Also, the results indicated that pre-existing psychosocial risk factors moderated the relationship between pandemic-related risk factors and children and carers' anxiety and between social isolation and confinement and carers' well-being. Simple slopes analysis suggested a stronger relationship between these domains of adversities and mental health outcomes in already more vulnerable families. It is important to consider the implications of social isolation measures and confinement for families' mental health, paying special attention to families with pre-existing psychosocial vulnerabilities.

Cytogenetic Analysis of the Fungus-Farming Ant Cyphomyrmex rimosus (Spinola, 1851) (Formicidae: Myrmicinae: Attini) Highlights Karyotypic Variation.

The fungus-farming ant genus Cyphomyrmex (subtribe Attina, clade Neoattina) comprises 23 described species that are widely distributed throughout the Neotropics. Species within Cyphomyrmex have taxonomic issues such as Cyphomyrmex rimosus (Spinola, 1851) which is likely a species complex. Cytogenetics is a useful tool for evolutionary studies and understanding species with dubious taxonomy. In this study, we characterized the karyotype of C. rimosus from Viçosa, Minas Gerais State, southeastern Brazil using classical and molecular cytogenetic techniques to enrich the chromosomal information about Cyphomyrmex. The karyotype of C. rimosus from the rainforest of southeastern Brazil (2n = 22, 18m + 4sm) notably contrasts with that previously described for this species in Panama (2n = 32). This intraspecific chromosomal variation suggests the existence of a species complex within this taxon according to the previous hypothesis derived from morphological analysis. We detected GC-rich heterochromatic regions in C. rimosus and, using repetitive DNA probes, showed that this heterochromatin shares repetitive sequences with other Neoattina species already studied, enhancing the importance of this specific genome region in the understanding of Attina evolution. Mapping of microsatellite (GA)15 on C. rimosus was restricted to the euchromatic regions of all chromosomes. The single intrachromosomal rDNA sites observed in C. rimosus follow the general genomic organization trend of ribosomal genes in Formicidae. Our study extends the data of chromosome mapping on Cyphomyrmex and reinforces the importance of cytogenetic studies in different localities to better understand taxonomic issues in widely distributed taxa such as C. rimosus.

Karyotype conservation and genomic organization of repetitive sequences in the leaf-cutting ant Atta cephalotes (Linnaeus, 1758) (Formicidae: Myrmicinae).

Leaf-cutting ants are among the New World's most conspicuous and studied ant species due to their notable ecological and economic roles. Cytogenetic studies carried out in Atta show remarkable karyotype conservation among the species. We performed classical cytogenetics and physical mapping of repetitive sequences in the leaf-cutting ant Atta cephalotes (Linnaeus, 1758), the type species of the genus. Our goal was to test the karyotype conservation in Atta and to understand the genomic organization and diversity regarding repetitive sequences in leaf-cutting ants. Atta cephalotes showed 2n = 22 (18m + 2sm + 2st) chromosomes. The heterochromatin followed a centromeric pattern, and the GC-rich regions and 18S rDNA clusters were co-located interstitially in the 4th metacentric pair. These cytogenetic characteristics were observed in other Atta species that had previously been studied, confirming the karyotype conservation in Atta. Evolutionary implications regarding the conservation of the chromosome number in leaf-cutting ants are discussed. Telomeric motif (TTAGG)n was detected in A. cephalotes as observed in other ants. Five out of the 11 microsatellites showed a scattered distribution exclusively on euchromatic areas of the chromosomes. Repetitive sequences mapped on the chromosomes of A. cephalotes are the first insights into genomic organization and diversity in leaf-cutting ants, useful in further comparative studies.

A Novel FGFR1 Missense Mutation in a Portuguese Family with Congenital Hypogonadotropic Hypogonadism.

Congenital hypogonadotropic hypogonadism (CHH) is a rare reproductive endocrine disorder characterized by complete or partial failure of pubertal development and infertility due to deficiency of the gonadotropin-releasing hormone (GnRH). CHH has a significant clinical heterogeneity and can be caused by mutations in over 30 genes. The aim of this study was to investigate the genetic defect in two siblings with CHH. A woman with CHH associated with anosmia and her brother with normosmic CHH were investigated by whole exome sequencing. The genetic studies revealed a novel heterozygous missense mutation in the Fibroblast Growth Factor Receptor 1 (FGFR1) gene (NM_023110.3: c.242T>C, p.Ile81Thr) in the affected siblings and in their unaffected father. The mutation affected a conserved amino acid within the first Ig-like domain (D1) of the protein, was predicted to be pathogenic by structure and sequence-based prediction methods, and was absent in ethnically matched controls. These were consistent with a critical role for the identified missense mutation in the activity of the FGFR1 protein. In conclusion, our identification of a novel missense mutation of the FGFR1 gene associated with a variable expression and incomplete penetrance of CHH extends the known mutational spectrum of this gene and may contribute to the understanding of the pathogenesis of CHH.

Cell Type-Specific Induction of Inflammation-Associated Genes in Crohn's Disease and Colorectal Cancer.

Based on the rapid increase in incidence of inflammatory bowel disease (IBD), the identification of susceptibility genes and cell populations contributing to this condition is essential. Previous studies suggested multiple genes associated with the susceptibility of IBD; however, due to the analysis of whole-tissue samples, the contribution of individual cell populations remains widely unresolved. Single-cell RNA sequencing (scRNA-seq) provides the opportunity to identify underlying cellular populations. We determined the enrichment of Crohn's disease (CD)-induced genes in a publicly available Crohn's disease scRNA-seq dataset and detected the strongest induction of these genes in innate lymphoid cells (ILC1), highly activated T cells and dendritic cells, pericytes and activated fibroblasts, as well as epithelial cells. Notably, these genes were highly enriched in IBD-associated neoplasia, as well as sporadic colorectal cancer (CRC). Indeed, the same six cell populations displayed an upregulation of CD-induced genes in a CRC scRNA-seq dataset. Finally, after integrating and harmonizing the CD and CRC scRNA-seq data, we demonstrated that these six cell types display a gradual increase in gene expression levels from a healthy state to an inflammatory and tumorous state. Together, we identified cell populations that specifically upregulate CD-induced genes in CD and CRC patients and could, therefore, contribute to inflammation-associated tumor development.

Family caregiver grief and post-loss adjustment: A longitudinal cohort study.

OBJECTIVE: In order to better understand the different grieving trajectories of the family caregivers (FCs), this study aims to examine the evolution of prolonged grief disorder (PGD) symptoms and the predictive role of the caregiving-related factors in the FCs' grieving trajectory from pre- to post-death. METHOD: A prospective cohort study was carried out with advanced cancer FCs evaluated before death (T1) and 6-12 months post-loss (T2). RESULTS: Participants in T1 (n = 156) were mostly female, adult child, or spouse of the care recipient, with a mean age of 51.78 (SD = 13.29). At T2, 87 FCs participated in the survey. PGD prevalence was higher pre-death (38.6%) than in bereavement (33.7%). Of those who met the PGD criteria before death, most also met these criteria after death (n = 26, 61.9%). Psychological distress and caregiver burden were highly correlated with pre-death grief, which in turn played a critical role in mediating the link between psychological distress and bereavement outcome. Great emotional closeness in the relationship was predictive of PGD symptoms persistence. In contrast, the long-term consequences of caregiver burden were not confirmed. SIGNIFICANCE OF RESULTS: This study provides evidence for the diversity of individual FC responses and the complex pattern of interactions between caregiving-related factors, relationship quality, and PGD symptoms evolution from pre- to post-death.

Successful metabolic control in diabetes type 1 depends on individual neuroeconomic and health risk-taking decision endophenotypes: a new target in personalized care.

BACKGROUND: Neurobehavioral decision profiles have often been neglected in chronic diseases despite their direct impact on major public health issues such as treatment adherence. This remains a major concern in diabetes, despite intensive efforts and public awareness initiatives regarding its complications. We hypothesized that high rates of low adherence are related to risk-taking profiles associated with decision-making phenotypes. If this hypothesis is correct, it should be possible to define these endophenotypes independently based both on dynamic measures of metabolic control (HbA1C) and multidimensional behavioral profiles. METHODS: In this study, 91 participants with early-stage type 1 diabetes fulfilled a battery of self-reported real-world risk behaviors and they performed an experimental task, the Balloon Analogue Risk Task (BART). RESULTS: K-means and two-step cluster analysis suggest a two-cluster solution providing information of distinct decision profiles (concerning multiple domains of risk-taking behavior) which almost perfectly match the biological partition, based on the division between stable or improving metabolic control (MC, N = 49) v. unstably high or deteriorating states (NoMC, N = 42). This surprising dichotomy of behavioral phenotypes predicted by the dynamics of HbA1C was further corroborated by standard statistical testing. Finally, the BART game enabled to identify groups differences in feedback learning and consequent behavioral choices under ambiguity, showing distinct group choice behavioral patterns. CONCLUSIONS: These findings suggest that distinct biobehavioral endophenotypes can be related to the success of metabolic control. These findings also have strong implications for programs to improve patient adherence, directly addressing risk-taking profiles.

Assessing the Relationship between PTSS in Childhood Cancer Survivors and Their Caregivers and Their Quality of Life.

Childhood cancer is a traumatic experience for survivors and their families. The experience of this disease affects survivors' and families' quality of life, even years after it occurs. The purpose of the present study was to assess if the caregivers' posttraumatic stress symptoms mediated the associations between survivors' posttraumatic stress symptoms and caregivers' quality of life, in a sample of 46 dyads of caregivers and childhood cancer survivors. Survivors and caregivers completed the PCL-5, and caregivers completed the WHOQOL-bref. Results showed that survivors' and caregivers' posttraumatic stress symptoms scores and caregivers' quality of life were associated. The caregivers' posttraumatic stress symptoms mediated the relationship between survivors' posttraumatic stress symptoms and caregivers' quality of life. Knowing posttraumatic stress symptoms direct and indirect effects on caregivers' quality of life contributes to understand their experience and to develop intervention strategies with this population.

Measuring Empowerment Counselling in Routine Primary Health Care: Psychometric Properties of a Portuguese Adaptation of the Empowering Speech Practices Scale.

PURPOSE: Empowerment is a widely accepted approach to health promotion in which primary care nurses play an important role. Despite its clinical importance, empirical knowledge is low, mainly due to the lack of instruments to measure this construct. The Empowering Speech Practices Scale (ESPS) is a Finnish measure used to assess the empowerment process in counselling sessions. We designed this study to assess the psychometric properties of a Portuguese adaptation of the ESPS for families of 5-year-old children and nurses in well-child visits. DESIGN AND METHODS: We used a cross-sectional survey design. The ESPS was translated and adapted to the context of children and family health promotion. We administered a sociodemographic questionnaire and the Portuguese ESPS to a sample of 82 families attending a 5-year-old well-child visit and 25 primary care nurses in Portugal. We evaluated the Portuguese ESPS for construct validity and internal consistency. RESULTS: Exploratory factor analysis supported a 44-item scale, two-component model, which is similar to the original version, explaining 73.79% of the total variance. Each subscale presented excellent internal consistency and distinguished consultations conducted by nurses with academic training in empowerment patient education. CONCLUSIONS AND IMPLICATIONS: The Portuguese ESPS is a valid and reliable instrument for assessing empowerment in health counselling with families in well-child visits. It looks at the process from two perspectives: the nurses' and the families' perspectives. It can be useful to evaluate quality of care, to identify areas of improvement, and to delve deeper into relationships between empowerment and health outcomes.

Sexuality in Emerging Adults with Type 1 Diabetes Mellitus: An Exploratory Study Using Thematic Analysis.

This qualitative cross sectional study seeks to explore the perceptions of emerging adults with Type 1 Diabetes Mellitus regarding the impact of this disease on their Sexual and Reproductive Health (SRH) using thematic analysis on the answers of 59 participants. Hypoglycemia and hyperglycemia during sexual activity, the use of insulin pump and the interconnection between an individual and the interpersonal impact of this illness were identified as crucial. This sample perceives their clinical condition as influential in their SRH and highlights the role of romantic partners in promoting their health and well-being.

Do parents of children with cancer want to participate in treatment decision-making?

PURPOSE: This study aimed to describe parents' preferences regarding their role in treatment decision-making when a child has cancer and examines whether their preferences were related to parents sociodemographic characteristics (sex and education level), patients' characteristics (age group and treatment status), and healthcare context features (parents' perception of family-centered care). METHODS: Two hundred and twenty-eight parents of children/adolescents with cancer were recruited from two Portuguese pediatric oncology wards. Participants provided sociodemographic and clinical information. The Control Preferences Scale for Pediatrics was used to assess the parents' preferred role in treatment decision-making. The Measure of Process of Care assessed the parents' perception of family-centered care (family-centered services and providing general information subscales). RESULTS: Results showed that parents preferred a passive-collaborative role (45.2%), followed by collaborative (27.2%), passive (21.0%), and active-collaborative (6.6%). None preferred an active role. Chi-square test showed that the group of parents preferring a passive role had a lower proportion of more-educated parents, compared to those preferring active-collaborative or collaborative roles. Additionally, groups did not proportionally differ according to the parents' sex, patients' age, and treatment status. A multivariate analysis of variance showed that parents preferring an active-collaborative role reported lower mean scores on family-centered services compared to those preferring passive-collaborative and passive roles. Finally, no significant differences were found concerning providing general information. CONCLUSIONS: This study's findings may guide professionals in identifying parents' preferences regarding their participation in treatment decision-making process. Mapping their preferences may support professionals in promoting desirable levels of parental involvement in decisions in pediatric oncology context.

Two sides of the same well-child visit: Analysis of nurses' and families' perspectives on empowerment in health counselling.

AIMS: To explore the degree of empowering health counselling in well-child visits, considering nurse and family perspectives and to examine its associated factors. BACKGROUND: Empowerment has gained high priority in the world health strategy, being claimed for its benefits for people's health and well-being. DESIGN: The design includes an exploratory cross-sectional, correlational study. METHODS: We collected data between January 2018-October 2019 from a convenience sample of 82 families attending a 5-year-old well-child visit and 25 nurses at Portuguese health centres. Families and nurses assessed the same counselling session using parallel statements of the Portuguese Empowering Speech Practice Scale, grouped in two subscales (nurses' action and families' action). Questionnaires also included the Parent's Longitudinal Continuity in Primary Care scale, the Family Nutrition and Physical Activity tool and anthropometric and sociodemographic questions. We employed descriptive statistics, paired-samples t-test, analysis of variance and regression analysis. RESULTS: Both nurses and families reported that empowerment had been practiced in high degree. The most practiced elements were those from nurses' action subscale (e.g. constructing a positive atmosphere) and the least practiced were from families' action (e.g. disclosure). A discrepancy between nurses' and families' ratings were found for individualized information and advice, disclosure and asking questions, with families reporting higher scores. Nurses' formal training in empowerment and obesity was associated with higher scores on the nurses' action subscale. The families' limited experience with a regular health centre and nurse and families having children with overweight were both associated with lower scores on the two subscales. CONCLUSIONS: Although the positive experience by nurses and families is an important finding, the reasons for the differences in perceptions of empowerment require further research. IMPACT: The Portuguese Empowering Speech Practice Scale can be a useful tool to evaluate services, both from professionals' and families' perspectives and to identify areas of improvement.

Family Caregivers' Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges.

The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving.

Parents' psychological well-being when a child has cancer: Contribution of individual and family factors.

OBJECTIVE: The aim of this study was to examine the contribution of individual (positive reappraisal) and family factors (parenting satisfaction, couple relationship quality, and family life difficulty) to the psychological well-being (PWB) of parents of children/adolescents diagnosed with cancer. METHODS: This cross-sectional study was conducted at two pediatric oncology wards in Portugal. Two-hundred and five parents of pediatric patients with cancer completed self-report questionnaires assessing the use of positive reappraisal as a coping strategy, parenting satisfaction, relationship quality, family life difficulty, and PWB. Sociodemographic and clinical data were also assessed. RESULTS: Standard multiple regression analysis showed a significant contribution of both individual- and family-level factors to parents' PWB. Specifically, the use of positive reappraisal as a coping strategy, parenting satisfaction, and relationship quality were associated with higher PWB; conversely, family life difficulty was linked to lower PWB. Sociodemographic (child's age and family's socioeconomic status) and clinical variables (time since diagnosis and treatment status) were not associated with PWB. CONCLUSIONS: The present study identified potential resources for parents' adaptation to this stressful situation, contributing with insightful conclusions for both research and clinical practice. Screening and addressing both individual- and family-level aspects may be crucial to foster parents' well-being when a child is diagnosed with cancer.

Disease course of inflammatory bowel disease unclassified in a European population-based inception cohort: An Epi-IBD study.

BACKGROUND AND AIM: A definitive diagnosis of Crohn's disease (CD) or ulcerative colitis (UC) is not always possible, and a proportion of patients will be diagnosed as inflammatory bowel disease unclassified (IBDU). The aim of the study was to investigate the prognosis of patients initially diagnosed with IBDU and the disease course during the following 5 years. METHODS: The Epi-IBD study is a prospective population-based cohort of 1289 IBD patients diagnosed in centers across Europe. Clinical data were captured prospectively throughout the follow-up period. RESULTS: Overall, 476 (37%) patients were initially diagnosed with CD, 701 (54%) with UC, and 112 (9%) with IBDU. During follow-up, 28 (25%) IBDU patients were changed diagnoses to either UC (n = 20, 71%) or CD (n = 8, 29%) after a median of 6 months (interquartile range: 4-12), while 84 (7% of the total cohort) remained IBDU. A total of 17 (15%) IBDU patients were hospitalized for their IBD during follow-up, while 8 (7%) patients underwent surgery. Most surgeries (n = 6, 75%) were performed on patients whose diagnosis was later changed to UC; three of these colectomies led to a definitive diagnosis of UC. Most patients (n = 107, 96%) received 5-aminosalicylic acid, while 11 (10%) patients received biologicals, of whom five remained classified as IBDU. CONCLUSIONS: In a population-based inception cohort, 7% of IBD patients were not given a definitive diagnosis of IBD after 5 years of follow-up. One in four patients with IBDU eventually was classified as CD or UC. Overall, the disease course and medication burden in IBDU patients were mild.

Parental Cognitions and Motivation to Engage in Psychological Interventions: A Systematic Review.

This paper reviews the available research on the predictors of parental engagement in preventive and therapeutic psychological interventions that target mental health problems in children. Based on previous literature, seven predictors concerning parental motivation to engage are considered: perceived child problems, perceived parenting, attributions of problems, self-efficacy, expectations about treatment, perceived obstacles and global motivation to engage. PRISMA guidelines for systematic review were used to conduct the literature search. Thirty-seven studies that examined prospective relations between parental cognitions evaluated at the beginning of the intervention and parental engagement during the intervention were included. Most studies focused on the parents' perception of the child's problems and of parenting, with fewer studies examining the role of the other parental cognitions. The results suggest that the psychological dimensions proposed in motivational models may play an important role in understanding parental engagement in preventive and therapeutic psychological interventions.

Family Management of Pediatric Cancer: Links with Parenting Satisfaction and Psychological Distress.

Research has long acknowledged the disruptions posed by pediatric cancer diagnosis and treatment to family life. Nonetheless, the mechanisms through which the family response influences parents' mental health in this adverse context are not fully understood. The main goal of the present study was to examine the direct and indirect links, via parenting satisfaction, between family condition management and psychological distress of parents of children with cancer. Participants were 201 parents (86.6% mothers) of children/adolescents diagnosed with cancer who completed self-report questionnaires assessing family condition management (family life difficulty and parental mutuality), parenting satisfaction, and psychological distress (anxiety and depression). Structural equation modeling was used to test the proposed mediation model. The results showed that parenting satisfaction mediated the association between both the family condition management dimensions (family life difficulty and parental mutuality) and depression. Specifically, greater family life difficulties and lower parental mutuality were associated with lower parenting satisfaction, which, in turn, was associated with higher levels of depression. Additionally, greater family life difficulties and lower parental mutuality were directly linked to higher levels of anxiety. Multigroup analyses suggested that the model was valid across patient age groups (children vs. adolescents) and treatment status (on vs. off-treatment). These findings reinforce the need for family- and parent-based interventions in the pediatric oncology field. Interventions that target families' difficulties and promote their resources are likely to foster parenting satisfaction and psychological adjustment.

Desde hace tiempo, las investigaciones han reconocido las dificultades que plantea el diagnóstico de cáncer infantil y el tratamiento para la vida familiar. No obstante, los mecanismos a través de los cuales la respuesta de la familia influye en la salud mental de los padres en este contexto adverso no se comprenden totalmente. El objetivo principal del presente estudio fue analizar los vínculos directos e indirectos, mediante la satisfacción con la crianza, entre el manejo de la enfermedad por parte de la familia y el distrés psicológico de los padres de niños con cáncer. Los participantes fueron 201 padres (86.6% madres) de niños/adolescentes diagnosticados con cáncer quienes contestaron cuestionarios de autoinforme que evaluaban el manejo de la enfermedad por parte de la familia (la dificultad para la vida familiar y la reciprocidad parental), la satisfacción con la crianza y el distrés psicológico (ansiedad y depresión). Se utilizó el modelo de ecuaciones estructurales para evaluar el modelo de mediación propuesto. Los resultados demostraron que la satisfacción con la crianza medió la asociación entre las dimensiones de manejo de la enfermedad por parte de la familia (la dificultad para la vida familiar y la reciprocidad parental) y la depresión. Específicamente, una mayor dificultad para la vida familiar y una menor reciprocidad parental estuvieron asociadas con una menor satisfacción con la crianza, la cual, a su vez, estuvo asociada con niveles más altos de depresión. Además, una mayor dificultad para la vida familiar y una menor reciprocidad parental estuvieron asociadas directamente con niveles más altos de ansiedad. Los análisis multigrupo sugirieron que el modelo era válido entre los grupos etarios de pacientes (niños frente a adolescentes) y el estado del tratamiento (en tratamiento frente a sin tratamiento). Estos hallazgos reafirman la necesidad de realizar intervenciones para la familia y los padres en el ámbito de la oncología pediátrica. Probablemente, las intervenciones que se ocupen de las dificultades de las familias y promuevan sus recursos fomentarán la satisfacción con la crianza y la adaptación psicológica.