Validation of the Adult Attachment Questionnaire-Revised (CAA-r).

The Adult Attachment Questionnaire-Revised and its psychometric properties are presented for dimensional and categorical evaluation of adult attachment style. Eight items were added to the original questionnaire (CAA; Melero and Cantero, 2008) that expanded avoidance dimension assessment and sensitivity evaluation. The exploratory factor analysis EFA led to 35 items grouped in 4 affective dimensions. (1) Anxiety: Need for approval, negative self-esteem, fear for rejection/abandonment and relationship anxiety; (2) Socioemotional competence: Emotional openness, sensitivity, and confidence; (3) Avoidance: Self-reliance and emotional discomfort with intimacy, and (4) Anger: Resentment, anger and intransigence. The cluster analysis confirmed the categorization of the 4 styles of attachment described by Bartholomew (Bartholomew and Horowitz, 1991). The questionnaire showed satisfactory levels of reliability and validity.

Healthcare service use for children with chronic complex diseases: A longitudinal six-year follow-up study.

PURPOSE: The objective was analysed the patterns use of healthcare services of this population and the influence of their clinical and sociodemographic characteristics. DESIGN AND METHODS: A six-year longitudinal follow-up study was performed to evaluate the annual healthcare resources use and clinical data among children with complex chronic diseases in Spain between 2015 and 2021. The sample trends in healthcare usage and the associated factors were analysed using ANCOVA and multivariable linear regression models. RESULTS: Patients had high attendance during the follow-up period, with >15 episodes year. This trend decreased over time, especially in children with oncological diseases compared with other diseases (F (16.75; 825.4) = 32.457; p < 0.001). A multivariable model showed that children with a greater number of comorbidities (ß = 0.17), shorter survival time (ß = -0.23), who had contact with the palliative care unit (ß = 0.16), and whose mothers had a higher professional occupation (ß = 0.14), had a greater use of the healthcare system. CONCLUSIONS: Children with a higher number of comorbidities and the use of medical devices made a greater frequentation of health services, showing a trend of decreasing use over time. Socioeconomic factors such as mothers' occupational status determine healthcare frequentation. These results suggest the existence of persistent gaps in care coordination sustained over time. PRACTICAL IMPLICATIONS: Systematized and coordinated models of care for this population should consider the presence of inequalities in health care use.

Accompaniment of minors during health care procedures.

In clinical practice, it is not rare to encounter situations in which parents and families are asked to leave the child alone with the health care team in rooms full of devices throughout the performance of procedures, which at times may give rise not only to conflicts but, more importantly, emotional sequelae in children or adolescents. We conducted a narrative review of the literature by searching the digital library of the public health care system of Andalusia for articles concerning the experiences of health care professionals and families with the accompaniment of paediatric patients during health care procedures. We restricted the search to studies published in Spanish or English and conducted in humans. The review evinced the need to humanise care in order to improve care quality. The need to accompany minors is supported by the evidence from works that have analysed the factors involved in the persistence of these behaviours and attitudes in both professionals and parents. We consider it necessary to develop institutional policies and appoint mediators to compile the statements of different national and international societies, taking into account legal aspects but, above all, the pertinent values from a health care ethics perspective, and in pursuit of the best interests of the child.

Acompañamiento a los menores durante los procedimientos asistenciales / Accompaniment of minors during health care procedures

En la práctica clínica no es infrecuente observar situaciones en las cuales se invita a los progenitores y la familia a dejar a los menores en soledad junto al equipo asistencial en estancias repletas de tecnología durante la realización de procedimientos, dando lugar en ocasiones a conflictos, pero sobre todo con consecuencias emocionales en los niños o adolescentes.Se ha realizado una revisión narrativa de la literatura mediante búsqueda bibliográfica en la biblioteca virtual del sistema sanitario público de Andalucía, siendo los criterios de inclusión utilizados, estudios que conciernen a las experiencias de profesionales sanitarios y familiares sobre el acompañamiento de la población pediátrica en los procedimientos asistenciales. El resultado de la búsqueda se limitó a trabajos en humanos en español e inglés.Esta revisión pone de manifiesto la necesidad de humanizar la asistencia sanitaria para mejorar la calidad de la atención. Se justifica la necesidad de acompañamiento de los menores, a través de trabajos que han analizado los factores que intervienen en la permanencia de estas conductas y actitudes tanto por profesionales como padres. Se recomienda la necesidad de políticas institucionales y figuras mediadoras que recojan las declaraciones de algunas sociedades nacionales e internacionales teniendo en cuenta aspectos legales, pero sobre todo los valores en juego desde una ética del cuidado y búsqueda del interés superior del menor.(AU)

In clinical practice, it is not rare to encounter situations in which parents and families are asked to leave the child alone with the health care team in rooms full of devices throughout the performance of procedures, which at times may give rise not only to conflicts but, more importantly, emotional sequelae in children or adolescents.We conducted a narrative review of the literature by searching the digital library of the public health care system of Andalusia for articles concerning the experiences of health care professionals and families with the accompaniment of paediatric patients during health care procedures. We restricted the search to studies published in Spanish or English and conducted in humans.The review evinced the need to humanise care in order to improve care quality. The need to accompany minors is supported by the evidence from works that have analysed the factors involved in the persistence of these behaviours and attitudes in both professionals and parents. We consider it necessary to develop institutional policies and appoint mediators to compile the statements of different national and international societies, taking into account legal aspects but, above all, the pertinent values from a health care ethics perspective, and in pursuit of the best interests of the child.(AU)

Hepatic SPARC Expression Is Associated with Inflammasome Activation during the Progression of Non-Alcoholic Fatty Liver Disease in Both Mice and Morbidly Obese Patients.

The severity of non-alcoholic fatty liver disease (NAFLD) ranges from simple steatosis to steatohepatitis, and it is not yet clearly understood which patients will progress to liver fibrosis or cirrhosis. SPARC (Secreted Protein Acidic and Rich in Cysteine) has been involved in NAFLD pathogenesis in mice and humans. The aim of this study was to investigate the role of SPARC in inflammasome activation, and to evaluate the relationship between the hepatic expression of inflammasome genes and the biochemical and histological characteristics of NAFLD in obese patients. In vitro studies were conducted in a macrophage cell line and primary hepatocyte cultures to assess the effect of SPARC on inflammasome. A NAFLD model was established in SPARC knockout (SPARC-/-) and SPARC+/+ mice to explore inflammasome activation. A hepatic RNAseq database from NAFLD patients was analyzed to identify genes associated with SPARC expression. The results were validated in a prospective cohort of 59 morbidly obese patients with NAFLD undergoing bariatric surgery. Our results reveal that SPARC alone or in combination with saturated fatty acids promoted IL-1ß expression in cell cultures. SPARC-/- mice had reduced hepatic inflammasome activation during the progression of NAFLD. NAFLD patients showed increased expression of SPARC, NLRP3, CASP1, and IL-1ß. Gene ontology analysis revealed that genes positively correlated with SPARC are linked to inflammasome-related pathways during the progression of the disease, enabling the differentiation of patients between steatosis and steatohepatitis. In conclusion, SPARC may play a role in hepatic inflammasome activation in NAFLD.

Sedation in pediatric palliative care: The role of pediatric palliative care teams.

OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams. METHODS: Ambispective study with the participation of 14 PPCT working in Spain. RESULTS: From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years' experience (66.7% vs. 45.5%, p = 0.018). SIGNIFICANCE OF RESULTS: PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.

Relations between Positive Parenting Behavior during Play and Child Language Development at Early Ages.

Parental behavior in interactions with children has been related to child language development. Our study contributes to the literature about relations between the characteristics of parent-child interactions during play and a child's language development in typically developing children at early ages, with data from mothers and fathers from the same families in Spain. Our aim was to analyze the relation between positive parenting behaviors assessed with the Spanish version of the Parenting Interactions with Children: Checklist of Observations Linked to Outcomes (PICCOLO) and child language development assessed with the Bayley-III scales. We controlled for some sociodemographic variables. The participants were 90 children aged 15-31 months and their mothers and fathers. Bivariate analysis showed significant positive relations between mothers' responsive, encouraging and teaching behaviors and a child's language scores. Relations were found between fathers' encouraging and teaching behaviors and a child's language. Regression models indicate that maternal and paternal encouraging behaviors predicted 18% of the variability in the child's receptive language, and maternal responsive and teaching behaviors predicted 16% of the variability in the child's expressive language and total language scores. The study provides new data that support the relevance of positive parental behaviors to improve a child's linguistic development.

End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?

Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019. Fourteen specific pediatric palliative care teams participated. There are 164 patients, most of them suffering from oncologic, neurologic, and neuromuscular processes. The follow-up time was 2.4 months. The parents voiced preferences in respect of the place of death for 125 of the patients (76.2%). The place of death for 95 patients (57.9%) was at the hospital and 67 (40.9%) was at home. The existence of a palliative care team for over 5 years is more likely to be related to families voicing preferences and their fulfillment. Longer follow-up times by pediatric palliative care teams were observed in families with whom preferences regarding the place of death were discussed and in patients who died at home. Patients who did not receive home visits, when the pediatric palliative care team did not provide full care and when preferences regarding the place of death were not discussed with parents, were more likely to die in the hospital.   Conclusions: Advance planning of end-of-life care is one of the most important aspects of pediatric palliative care. The provision of services by the teams and the follow-up time are related to parents' expressed preferences and the place of death. What is Known: • Various studies have shown how the availability of pediatric palliative care services improves the quality of life of patients and their families while reducing costs. • The place of death is an important factor influencing the quality of end-of-life care for dying people. The increase in palliative care teams increases the number of deaths in the home and having this care available 24/7 increases the probability of dying at home. What is New: • Our study identifies how a longer follow-up time of patients by palliative care teams is significantly associated with death at home and with express and comply with the preferences expressed by families. • Home visits by the palliative care team increase the likelihood that the patient will die at her home and that the preferences expressed by the palliative care team families will be cared for.

Effects of affectively-loaded childhood-related photos from the IAPS on the induction of involuntary autobiographical memories in young and older adults.

Objective: Aging produces changes in emotional reactivity and the retrieval of autobiographical memories. The main aim of this study was to assess age-related differences, comparing emotion induction and autobiographical memory recall using photos from the International Affective Picture System (IAPS) that are thematically related to childhood. Method: A cross-sectional observational study was conducted, with the participation of 327 individuals (168 young adults and 159 older adults) with no cognitive impairment and aged between 18 and 88 years. We showed the participants a set of five pictures from the IAPS, the affective content of which was related to childhood. Two of these were considered to be positive images, two negative and one neutral, according to the valence of these pictures in the literature. The main study variables were the reactions associated with emotional valence or pleasure, arousal and dominance, after viewing the photos, and the autobiographical memories retrieved by the participants. Results: The younger adults retrieved a larger number of memories than their older counterparts. As regards the responses to the five affective pictures (IAPS) on valence, arousal and dominance (IAPS), statistically significant differences were only found for pictures 2,345 (BlackEye), with a more positive valence in the group of older adults and higher arousal in the young ones, and 2,312 (Mother), with a more positive valence in the group of older persons. A greater number of memories were retrieved for the photos that generated higher levels of pleasure, greater relaxation and greater emotional control. Conclusion: Of the variables that may be associated with the elicitation of involuntary autobiographical memories, the most significant are age and a positive stimulus.

Conocimiento y opinión sobre la atención integrada del niño con parálisis cerebral desde Atención Primaria / Knowledge and opinion on integrated care for children with cerebral palsy in Primary Car

Introducción: los pacientes con parálisis cerebral infantil (PCI) precisan de múltiples cuidados y terapias. El objetivo principal del estudio es describir la opinión, percepción y conocimiento sobre el abordaje integral del niño con PCI de pediatras de Atención Primaria (AP), así como su manejo actual sobre el mismo. Material y métodos: estudio transversal, descriptivo y de ámbito nacional, mediante encuesta en línea, a pediatras y médicos de familia dedicados a la pediatría que ejercían en AP entre enero y febrero de 2021. Resultados: se recibieron 335 respuestas. El 91% piensa que no dispone de formación suficiente y que su conocimiento es limitado, reconociendo el 65% que no está capacitado para el manejo del niño con PCI. Un 97,3% opina que es necesaria la formación en esta patología y el 99% que es necesaria la creación de protocolos específicos. Al 57,2% le gustaría ser pediatra coordinador trabajando con el pediatra hospitalario. El 75% estima que los cuidadores no están satisfechos con la atención que reciben, considerando que la atención integral al niño con PCI desde AP o disponer de unidades específicas para ello mejoraría la satisfacción familiar, resultando estadísticamente significativo. Conclusiones: la mayoría de los pediatras no se sienten capacitados para llevar a cabo el manejo del niño con PCI desde AP y consideran necesario la formación y creación de guías específicas. Opinan que la atención integral del paciente con PCI mejoraría la calidad de vida de las familias, abogando para ello por modelos mixtos de coordinación (AU)

Objective: patients with cerebral palsy (CP) require multiple treatments and services. The primary objective of the study was to describe the opinion, perception and knowledge of primary care (PC) paediatricians about the comprehensive approach to the care of children with CP and their current management of this condition.Material and methods: cross-sectional, descriptive and nationwide study carried out through an online survey of paediatricians and family physicians dedicated to paediatric care and practicing in the PC level in January and February 2021.Results: we received a total of 335 responses. Ninety-one percent of respondents thought they had insufficient training and limited knowledge, and 65% did not considered themselves adequately qualified to manage children with CP. In addition, 97.3% believed that training on CP is necessary and 99% that specific protocols need to be developed. Of all respondents, 57.2% would like to be the care coordinator working in collaboration with hospital paediatricians. Last of all, 75% believed that the caregivers were not satisfied with the care received, and that the provision of comprehensive care to children with CP from PC or the availability of specific units for their management would improve family satisfaction, a result that was statistically significant.Conclusions: most paediatricians do not feel qualified for the management of children with CP from PC and consider that training and the development of specific guidelines are necessary. Professionals believe that an integrated, comprehensive approach to the care of these patients would improve the quality of life of families, and advocated for hybrid care coordination models. (AU)

Calidad de vida profesional en servicios de pediatría: estudio transversal / Professional quality of life in pediatric services: A cross-sectional study

Objetivo: Determinar la calidad de vida laboral entre los diferentes profesionales de enfermería pediátrica,teniendo en cuenta factores sociodemográficos y de contexto laboral, y la relación del burnout, satisfacción por compasión y fatiga por compasión entre los diferentes puestos de trabajo. Método: Estudio observacional descriptivo transversal desarrollado entre enero y marzo de 2019 en el ámbito nacional. Se recopilaron características sociodemográficas y el Cuestionario ProQOL IV. Los datos se codificaron en Microsoft Office Excel, y se analizaron con SPSS, considerándose diferencias estadísticamente significativas para valores p<0,05. Resultados: Participaron 68 enfermeras. Los resultados obtenidos muestran una menor satisfacción por compasión en aquellos profesionales que tienen un contrato de trabajo fijo, así como los que desempeñan su labor en puestos de hospitalización respecto a los del área de oncología. En nuestra muestra existe una elevada fatiga por compasión, observando una relación significativa entre la fatiga por compasión y la creencia religiosa, siendo superior en los profesionales creyentes. Conclusiones: Es necesario identificar factores asociados con la calidad de vida profesional para plantear estrategias de intervención y condiciones de mejora, siendo precisa una mayor implicación de las instituciones sanitarias para la mejora de la calidad de vida profesional en la enfermería pediátrica.(AU)

Objective: Determine the quality of working life among the different pediatric nursing professionals, taking into account socio-demographic and work context factors, and the relationship of Burnout, compassion satisfaction and compassion fatigue between different job positions. Method: Cross-sectional descriptive observational study carried out between January-March 2019 at the national territory. The professional quality of life was measured with ProQOL IV and sociodemographic characteristics were recorded. The data was encoded in Microsoft Office Excel, and analyzed with SPPS considering statistically significant differences p <0.05. Results: A total of 68 nurses were included in the study. The results obtained show less satisfaction due to compassion in those professionals who have a permanent employment contract, as well as those who carry out their work in hospitalization positions compared to those in the oncology area. In our sample there are very high levels of compassion fatigue, in addition we observed a significant relationship between compassion fatigue and religious belief, being higher in believing professionals. Conclusions: It's necessary to identify associated factors in the professional quality of life to propose intervention strategies and improvement conditions, requiring greater involvement of health institutions to improve the professional quality of life in pediatric nursing.(AU)

Parenting of Spanish mothers and fathers playing with their children at home.

The aims of this study were to compare the parenting behaviors of mothers and fathers when evaluated in a free play situation at home and to study how these behaviors were related to the sociodemographic variables of the family. The study included 155 mothers and 155 fathers from the same families in Spain. The children (90 boys and 65 girls) were typically developing and were aged between 10 and 47 months old. The parents completed a sociodemographic questionnaire, and parenting behaviors in four domains (Affection, Responsiveness, Encouragement, and Teaching) were assessed from self-recorded videotapes, in accordance with the Spanish version of the PICCOLO. Our results showed both commonalities and differences between the mothers and fathers. The mean scores for the four parenting domains followed a similar pattern in both mothers and fathers: the highest mean score was in the Responsiveness domain, followed by the Affection, Encouragement, and the Teaching domains. Regarding the second aim, no differences were observed in parenting according to the child's gender and the only domain related to the child's age was mother's Teaching. Mothers with a higher educational level scored higher on all parenting domains, except for Responsiveness. Family income was positively related to maternal Affection, Encouragement, and the total PICCOLO score, and to the father's score in the Teaching domain. This study provides evidence that Spanish mothers and fathers show very similar strengths for promoting children's development during interactions. These results are relevant to inform social public policies and family programs.

End of life in patients under the care of paediatric palliative care teams. Multicentre observational study.

INTRODUCTION: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. PATIENTS AND METHODS: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. RESULTS: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. CONCLUSIONS: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.

Professional quality of life in pediatric services: A cross-sectional study.

OBJECTIVE: Determine the quality of working life among the different pediatric nursing professionals, taking into account socio-demographic and work context factors, and the relationship of Burnout, compassion satisfaction and compassion fatigue between different job positions. METHOD: Cross-sectional descriptive observational study carried out between January-March 2019 at the national territory. The professional quality of life was measured with ProQOL IV and sociodemographic characteristics were recorded. The data was encoded in Microsoft Office Excel, and analyzed with SPPS considering statistically significant differences p < 0.05. RESULTS: A total of 68 nurses were included in the study. The results obtained show less satisfaction due to compassion in those professionals who have a permanent employment contract, as well as those who carry out their work in hospitalization positions compared to those in the oncology area. In our sample there are very high levels of compassion fatigue, in addition we observed a significant relationship between compassion fatigue and religious belief, being higher in believing professionals. CONCLUSIONS: It's necessary to identify associated factors in the professional quality of life to propose intervention strategies and improvement conditions, requiring greater involvement of health institutions to improve the professional quality of life in pediatric nursing.

El final de vida en pacientes atendidos por equipos de cuidados paliativos pediátricos. Estudio observacional multicéntrico / End of life in patients under the care of paediatric palliative care teams. Multicentre observational study

Introducción:Cada año fallecen en España alrededor de 2000 niños y adolescentes; sin embargo, conocemos poco las particularidades que envuelven a la muerte en pediatría. El objetivo de este estudio es documentar las características de los pacientes que fallecen a cargo de los equipos de cuidados paliativos pediátricos en España. Pacientes y métodos:Estudio retrospectivo, descriptivo y multicéntrico. Participaron 14 equipos de todo el territorio nacional.Resultados:Se obtuvieron datos de 164 pacientes. En la mayoría la enfermedad de base eran procesos oncológicos, neurológicos y neuromusculares. La mediana de edad al fallecimiento fue de 6,9 años (RIC: 11,2). La mediana de tiempo de seguimiento por el equipo fue de 0,3 años (RIC: 0,8 años). Los síntomas más frecuentes en la última semana de vida fueron disnea, dolor, aumento de secreciones y trastornos del sueño. El número de fármacos que se administraban a cada paciente una semana previa al fallecimiento tuvo una mediana de 6 (RIC: 4). El lugar de fallecimiento de 95 de los pacientes (57,9%) fue el hospital y de 67 (40,9%) fue su domicilio.Conclusiones:Los pacientes presentaban un amplio rango de edad y una exposición sustancial a la polifarmacia. El tiempo de seguimiento nos muestra el acceso tardío a los programas de cuidados paliativos, deberíamos hacer un esfuerzo para la introducción temprana de estos cuidados y que no quede relegada al final de vida. En España existe una distribución desigual de recursos, sin que todos los equipos tengan la posibilidad de atención domiciliaria, por lo que el lugar de fallecimiento debemos interpretarlo con cautela. (AU)

Introduction:Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain.Patients and methods:Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated.Results:Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home.Conclusions:There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution. (AU)

Utilization of Parallel Resources and Sociodemographic Factors in Treating Children with Complex Chronic Diseases: A Cross-Sectional Study.

BACKGROUND: Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other out-of-pocket expenses for healthcare. The use of these alternative health resources is sometimes unclear and may lead to health inequalities. To characterize the use made of alternative healthcare resources for children with complex chronic conditions. Additionally, we evaluate the influence of sociodemographic factors on the distribution of this utilization of resources; (2) Methods: Cross-sectional study. Children with complex chronic diseases were treated at a tertiary hospital in Granada, Spain in 2016. We analyzed their use of healthcare resources and socioeconomic variables. This research complies with STROBE guidelines for observational studies; (3) Results: In total, 265 children were analyzed (mean age 7.3 years, SD 4.63). A total of 105 children (39.6%) attended private consultations with specialists, and 12.1% (n = 32) of the children had additional private health insurance. One out three parents belonged to a mutual support association (n = 78), and 26% (n = 69) of the children used alternative therapies. Furthermore, 75.4% (n = 199) of the children received no psychological support. Children whose parents had a higher educational level and occupations status made greater use of parallel healthcare resources.; (4) Conclusions: A significant proportion of children used multiple health resources in addition to the public healthcare system depending on sociodemographic determinants. Studies are needed to determine whether the use of these alternative services achieves better levels of health.

Trastornos KAT6B: enterrando los síndromes Say-Barber-Biesecker-Young-Simpson y genitopatelar / The KAT6B-related disorders: Burying Say-Barber-Biesecker-Young-Simpson and genitopatellar syndrome

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Socioeconomic Factors and Quality of Life Perceived by Parents and Children with Complex Chronic Conditions in Spain.

Health-related quality of life of children with complex chronic conditions could be affected by sociodemographic factors. Most studies focus exclusively on the parents' perceptions of quality of life. This study aimed to determine the health-related quality of life of these children, according to their parents and the children themselves. A cross-sectional study was developed on children aged over five years with complex chronic conditions. Health-related quality of life, educational attainment, and social status were evaluated. A total of 101 children were included with a mean age of 10.48 years, and 35.6% were female. The most frequent disease was oncological (28.7%). Children perceived a better health-related quality of life, compared to their parents' assessment: median difference -8.4 (95%CI: -9.2 to -3.8). Moreover, differences were observed by socioeconomic factors. Parents and children with complex chronic conditions perceive differently the health-related quality of life. Social determinants associate with an uneven perceived quality of life.

Abordaje integral del niño con parálisis cerebral / Comprehensive approach to children with cerebral palsy

La parálisis cerebral infantil es una de las enfermedades más prevalentes y la causa de discapacidad más frecuente en pediatría. Los niños con parálisis cerebral tienen necesidades de atención médica complejas y a menudo requieren atención por un equipo multidisciplinar, sin embargo, en muchas ocasiones no existe la figura de un pediatra responsable que coordine todo el seguimiento.Realizamos un documento de ayuda en el abordaje de niños con parálisis cerebral dirigido a pediatras que sean coordinadores en la atención de estos pacientes. Nuestra finalidad es la de recopilar de forma ordenada los principales problemas que pueden desarrollar estos pacientes, saber cómo identificarlos y abordarlos en caso necesario, y establecer criterios para la derivación de estos pacientes a otros especialistas. (AU)

Infantile cerebral palsy is one of the most prevalent diseases and the most frequent cause of disability in paediatrics. Children with cerebral palsy have complex health care needs and often require the care of a multidisciplinary team. However, in many cases there is no paediatrician with overall responsibility for coordinating follow-up.We have produced a support document intended for paediatricians coordinating the care of children with cerebral palsy. Our aim is to provide an ordered compilation of the main issues these patients may develop, to know how to identify and address them if necessary, and to establish criteria for referring these patients to other specialists. (AU)

Comprehensive approach to children with cerebral palsy.

Infantile cerebral palsy is one of the most prevalent diseases and the most frequent cause of disability in paediatrics. Children with cerebral palsy have complex health care needs and often require the care of a multidisciplinary team. However, in many cases there is no paediatrician with overall responsibility for coordinating follow-up. We have produced a support document intended for paediatricians coordinating the care of children with cerebral palsy. Our aim is to provide an ordered compilation of the main issues these patients may develop, to know how to identify and address them if necessary, and to establish criteria for referring these patients to other specialists.