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1.
Res Dev Disabil ; 139: 104536, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37269577

RESUMEN

BACKGROUND: Assessing Quality of Life (QoL) of persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning persons with PIMD. The perspectives of parents of children with PIMD on the assessment of their QoL have not been studied. AIM: To explore the perspectives of parents on the assessment of QoL of their children. METHODS: We conducted a qualitative study, forming three focus groups with 22 parents of children with PIMD to explore their views on what is necessary to assess QoL of their children and subsequently, who is best suited to assess QoL. RESULTS: Parents describe a long-term relationship of the assessor with family (child and parents), with trust as an important aspect, as a requirement to assess QoL. Parents consider family members, preferably the parents themselves as the best assessors of QoL, followed by siblings. Professional caregivers, mostly mentioned by name, are considered the next alternative. Most parents thought that physicians do not know the child well enough to assess their QoL. CONCLUSIONS: In conclusion, the parents of children with PIMD in our study consider trust and a long-term relationship essential for assessing QoL.


Asunto(s)
Personas con Discapacidad , Discapacidad Intelectual , Niño , Humanos , Calidad de Vida , Países Bajos , Padres , Familia
2.
Clin Nutr ; 41(11): 2517-2528, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-36223713

RESUMEN

BACKGROUND & AIMS: Maternal stress in the postpartum period affects not only the mother, but also her newborn child who is at increased risk for a wide range of disorders later in life. The mechanisms underlying transmission of maternal stress to the child remain elusive. Human milk (HM) is a potential candidate and is an important source of fatty acid (FA), which are crucial for child (neuro)development. This study aims to investigate whether maternal psychological and biological stress influences HM FA composition over the first month postpartum. METHODS: The Amsterdam Mother's Milk study is a prospective cohort study. We included lactating women who delivered at term with a large range of stress levels: a high stress (HS) group, women whose child was hospitalized for a minimum of 2 days (n=23) and a control (CTL) group, women who gave birth to a healthy child (n=73). HM was collected three times a day at postpartum days 10, 17 and 24. Perceived psychological stress was measured using multiple validated questionnaires, while biological stress measures were based on cortisol in hair, saliva and HM. HM FAs were analyzed by gas-chromatography and compared between groups. RESULTS: Maternal perceived stress scores were significantly higher in the HS group (p < 0.01), whereas cortisol measurements did not differ between groups. The absolute concentrations of total FA in HM (p=0.023), including the total amount of poly unsaturated fatty acids (PUFAs) (p=0.022) and omega-6 PUFAs (p=0.018), were lower in the HS group compared to the CTL group. Relative values of FAs did not differ between groups. CONCLUSION: Maternal stress in the first month postpartum was associated with overall lower levels of FA in HM. This possibly indicates a route of transmission of maternal stress signals to the infant. Future research should investigate if these stress-induced changes in HM FAs have consequences for child development.


Asunto(s)
Ácidos Grasos , Leche Humana , Humanos , Lactante , Recién Nacido , Femenino , Leche Humana/química , Ácidos Grasos/análisis , Lactancia , Estudios Prospectivos , Hidrocortisona/análisis , Periodo Posparto , Ácidos Grasos Insaturados/análisis , Lactancia Materna
3.
Orphanet J Rare Dis ; 17(1): 353, 2022 09 11.
Artículo en Inglés | MEDLINE | ID: mdl-36089585

RESUMEN

BACKGROUND: Congenital gastrointestinal malformation (CGIM) require neonatal surgical treatment and may lead to disease-specific sequelae, which have a potential psychological impact on parents. The aim of this study is to assess distress and symptoms of post-traumatic stress disorder (PTSD) in parents of patients with CGIM. In this cross-sectional study, seventy-nine parents (47 mothers and 32 fathers) of 53 patients with CGIM completed the Distress Thermometer for Parents (DT-P) and the Self Rating Scale for Posttraumatic Stress Disorders (SRS-PTSD) as part of the multidisciplinary follow-up of their children (aged 5-35 months). Group differences were tested between parents and representative Dutch reference groups with regard to rates of (clinical) distress and PTSD, and severity of overall distress and PTSD, for mothers and fathers separately. Mixed model regression models were used to study factors associated with the risk of (clinical) distress, PTSD and with severity of symptoms of PTSD (intrusion, avoidance and hyperarousal). RESULTS: Prevalence of clinical distress was comparable to reference groups for mothers (46%) and fathers (34%). There was no difference in severity of overall distress between both mothers as well as fathers and reference groups. Prevalence of PTSD was significantly higher in mothers (23%) compared to the reference group (5.3%) (OR = 5.51, p < 0.001), not in fathers (6.3% vs 2.2.%). Symptoms of intrusion were commonly reported by all the parents (75%). Longer total length of child's hospital stay was associated with more severe symptoms of intrusion, avoidance and hyperarousal. Child's length of follow-up was negatively associated with severity of intrusion. CONCLUSIONS: Having a child with CGIM has a huge impact on parents, demonstrated by a higher prevalence of PTSD in mothers, but not fathers, compared to parents in the general population. Monitoring of symptoms of PTSD of parents in follow-up is necessary.


Asunto(s)
Trastornos por Estrés Postraumático , Niño , Estudios de Cohortes , Estudios Transversales , Femenino , Humanos , Recién Nacido , Madres/psicología , Padres/psicología , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/epidemiología , Trastornos por Estrés Postraumático/psicología
4.
Int J Dev Disabil ; 68(2): 190-197, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35309693

RESUMEN

Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They 'sensed' QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers.

5.
Eur J Pediatr ; 180(8): 2345-2357, 2021 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-33821341

RESUMEN

Based on the United Nations Conventions on the Rights of the Child (CRC), it is a child's right to participate in all matters concerning its wellbeing. Little is known about chronically and/or critically ill children's participation in pediatric shared decision-making (SDM). We explored medical literature to see if and how these children participate in pediatric SDM. We searched relevant medical databases published between January 2008 and January 2020 for studies targeting children aged 4-18 years old, suffering from a chronic and/or critical disease. We found 9 relevant studies. SDM interventions mostly used were decision aids (n=8), questionnaires for caretakers/parents and children (n=4), and a SDM toolkit (n=2). Perceived involvement in SDM and knowledge increased amongst children, adolescents, and caretakers following these interventions. Decisional conflict measured using the 0-100 point DCS scale (higher scores indicate more decisional conflict) was reduced by 15.9 points in one study (p<0.01) and 17.8 points in another (95%CI: 13.3-22.9). Lower scores were associated with higher satisfaction with the decision aid by children, caretakers, and clinicians.Conclusion: Stakeholders should advocate initiatives to facilitate a child's participation preferences regarding pediatric SDM since decision support tools help chronically ill children to be more involved in SDM as they increase the children's knowledge and satisfaction and reduce decisional conflicts. What is Known: • Decision aids can help improve participation, knowledge, satisfaction, and health outcomes. • Quality and consistency of the information exchange impact quality and outcome of SDM. What is New: • Depending on a child's age, evolving capacities, and communication and participation preferences, more evidence is needed on which tools are suitable for chronically ill children to ensure their preferred participation in pediatric SDM. • Pediatricians adopt healthcare SDM tools and techniques that do not always take into account that a child's right to participate in pediatric SDM including the tendency to use interventions that are not specifically designed for pediatrics.


Asunto(s)
Toma de Decisiones , Participación del Paciente , Adolescente , Niño , Preescolar , Enfermedad Crónica , Humanos , Evaluación de Resultado en la Atención de Salud , Padres
6.
Mucosal Immunol ; 14(3): 605-614, 2021 05.
Artículo en Inglés | MEDLINE | ID: mdl-33772147

RESUMEN

Gastrointestinal viral infections are a major global cause of disease and mortality in infants. Cytotoxic CD8+ T cells are critical to achieve viral control. However, studies investigating the development of CD8+ T cell immunity in human tissues early in life are lacking. Here, we investigated the maturation of the CD8+ T cell compartment in human fetal, infant and adult intestinal tissues. CD8+ T cells exhibiting a memory phenotype were already detected in fetal intestines and increased after birth. Infant intestines preferentially harbored effector CCR7-CD45RA-CD127-KLRG1+/- CD8+ T cells compared to tissue-resident memory CD69+CD103+CD8+ T cells detected in adults. Functional cytotoxic capacity, including cytokine and granzyme B production of infant intestinal effector CD8+ T cells was, however, markedly reduced compared to adult intestinal CD8+ T cells. This was in line with the high expression of the inhibitory molecule PD-1 by infant intestinal effector CD8+ T cells. Taken together, we demonstrate that intestinal CD8+ T cell responses are induced early in human development, however exhibit a reduced functionality. The impaired CD8+ T cell functionality early in life contributes to tolerance during foreign antigen exposure after birth, however functions as an immune correlate for the increased susceptibility to gastrointestinal viral infections in infancy.


Asunto(s)
Linfocitos T CD8-positivos/inmunología , Intestinos/inmunología , Células T de Memoria/inmunología , Virosis/inmunología , Citotoxicidad Inmunológica , Susceptibilidad a Enfermedades , Femenino , Feto , Regulación del Desarrollo de la Expresión Génica , Humanos , Tolerancia Inmunológica , Lactante , Masculino , Persona de Mediana Edad , Receptor de Muerte Celular Programada 1/genética , Receptor de Muerte Celular Programada 1/metabolismo
7.
Eur J Pediatr ; 179(10): 1597-1602, 2020 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-32342189

RESUMEN

The aim of this study was to determine the potential impact of the Pediatric Emergency Care Applied Research Network (PECARN) rules on the CT rate in a large paediatric minor traumatic head injury (MTHI) cohort and compare this with current national Dutch guidelines. This was a planned sub-study of a prospective multicentre observational study that enrolled 1006 children younger than 18 years with MTHI. We calculated the number of recommended CT scans and described trauma-related CT scan abnormalities. The PECARN rules recommended a significantly lower percentage of CT scans in all age categories, namely 101/357 (28.3%) versus 164/357 (45.9%) (p < 0.001) in patients under 2 years of age and 148/623 (23.8%) versus 394/623 (63.2%) (p < 0,001) versus in patients 2 years and older.Conclusion: The projected CT rate can significantly be reduced if the PECARN rules are applied. We therefore advocate that the PECARN guidelines are also implemented in The Netherlands. What is Known: • To guide clinicians whether to perform a CT scan in children with a minor traumatic head injury (MTHI) clinical decision rules has been developed. • The overall CT scan rate in adherence with the Dutch MTHI guidelines is 44%. What is New: • The projected CT rate can significantly be reduced in a Dutch cohort of MTHI if the PECARN rules are applied. • The Dutch national guidelines for MTHI can safely be replaced by the PECARN rules.


Asunto(s)
Traumatismos Craneocerebrales , Servicios Médicos de Urgencia , Adolescente , Anciano de 80 o más Años , Niño , Preescolar , Traumatismos Craneocerebrales/diagnóstico por imagen , Técnicas de Apoyo para la Decisión , Servicio de Urgencia en Hospital , Humanos , Países Bajos , Estudios Prospectivos , Tomografía Computarizada por Rayos X
8.
Clin Nutr ; 39(4): 1101-1107, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-31029479

RESUMEN

BACKGROUND & AIMS: Maternal obesity at conception is considered a major predictor of offspring obesity. This could by driven at least in part by an altered placental fat transfer. However, the pathophysiological mechanisms involved are not fully understood. We investigated the in vivo materno-fetal transfer of fatty acids (FAs) in obese pregnant women using stable isotopes. METHODS: Ten obese and ten normo-weight pregnant women (control) received orally a bolus of 13C-labeled FAs 12 h before elective caesarean section: oleic acid (13C-OA), linoleic acid (13C-LA) and docosahexaenoic acid (13C-DHA). Maternal blood samples were collected at -12 (basal), -8, -4, -2, 0 h relative to the time of cesarean section. At the time of birth, arterial and venous cord bloods as well as placental tissue were collected. FAs composition was determined by gas-liquid chromatography and isotopic enrichment by gas chromatography-combustion-isotope ratio mass spectrometry. RESULTS: Maternal plasma insulin and placental weight tended to higher values in obese pregnant women although they did not present serum hyperlipidemia. Higher concentrations of 13C-LA and 13C-DHA were found in non-esterified FAs fraction in maternal plasma of obese mothers. The ratio of placental uptake for 13C-LA and 13C-DHA was lower in obese women compared to normal weight pointing toward a limited capacity of FA placental transfer, especially of essential FAs. Maternal insulin was associated to this lower placenta/maternal plasma ratio for both 13C-LA (R = -0.563, P = 0.012) and 13C-DHA (R = -0.478, P = 0.033). In addition, the ratio cord/maternal plasma of 13C-LA was significantly lower in obese women compared to controls. CONCLUSIONS: In conclusion, obese mothers without hyperlipidemia showed a reduced materno-fetal transfer of polyunsaturated FAs which could affect fetal development. This affect dietary recommendation for obese pregnant women. TRIAL REGISTRY NUMBER: ISRCTN69794527.


Asunto(s)
Isótopos de Carbono , Ácidos Grasos Insaturados/sangre , Intercambio Materno-Fetal/fisiología , Obesidad/sangre , Obesidad/fisiopatología , Complicaciones del Embarazo/sangre , Complicaciones del Embarazo/fisiopatología , Adolescente , Adulto , Cesárea , Femenino , Humanos , Embarazo , España , Adulto Joven
10.
Obes Sci Pract ; 4(4): 347-356, 2018 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-30151229

RESUMEN

OBJECTIVE: The objective of this research is to study effects of a 4-week high-protein (HP) diet on energy intake, resting energy expenditure (REE), protein turnover and body composition in children with obesity. METHODS: In this randomized placebo-controlled single-blind crossover study, children with obesity (n = 14; mean age: 10.1 years ± 1.2 standard deviation; body mass index-standard deviation score [BMI-SDS]: 2.8 ± 0.5) received an ad libitum HP (+50 g protein per day) or normal-protein (NP) diet for 4 weeks with a washout period of ≥2 weeks. Energy intake, REE, protein turnover, weight, BMI-SDS and body composition were measured. RESULTS: No differences were found in energy intake or REE between HP and NP. There was an increased urea production and phenylalanine hydroxylation after HP compared with NP (p < 0.05). There was an increased rise in fat-free mass after HP compared with NP (∆HP: 0.8 ± 0.8 kg vs. ∆NP: 0.1 ± 0.6 kg, p < 0.05). BMI and BMI-SDS increased during the study (BMI-SDS start: 2.8 ± 0.5, end: 2.9 ± 0.5, p < 0.05) without a difference between groups. CONCLUSIONS: A 4-week HP diet with ad libitum food intake did not affect energy intake and energy expenditure in children with obesity. BMI increased, although that could be partly explained by an increase in fat-free mass.

12.
J Agric Food Chem ; 66(27): 7036-7043, 2018 Jul 11.
Artículo en Inglés | MEDLINE | ID: mdl-29909634

RESUMEN

To study the variability in human milk oligosaccharide (HMO) composition of Chinese human milk over a 20-wk lactation period, HMO profiles of 30 mothers were analyzed using CE-LIF. This study showed that total HMO concentrations in Chinese human milk decreased significantly over a 20-wk lactation period, independent of the mother's SeLe status, although with individual variations. In addition, total acidic and neutral HMO concentrations in Chinese human milk decreased over lactation, and levels are driven by their mother's SeLe status. Analysis showed that total neutral fucosylated HMO concentrations in Chinese human milk were higher in the two secretor groups as compared to the nonsecretor group. On the basis of the total neutral fucosylated HMO concentrations in Chinese human milk, HMO profiles within the Se+Le+ group can be divided into two subgroups. HMOs that differed in level between Se+Le+ subgroups were 2'FL, DF-L, LNFP I, and F-LNO. HMO profiles in Dutch human milk also showed Se+Le+ subgroup division, with 2'FL, LNT, and F-LNO as the driving force.


Asunto(s)
Antígenos del Grupo Sanguíneo de Lewis , Leche Humana/química , Oligosacáridos/análisis , Pueblo Asiatico , Femenino , Humanos , Lactancia , Lactosa/análisis , Trisacáridos/análisis
13.
Eur J Pediatr ; 177(7): 995-1002, 2018 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-29675644

RESUMEN

Pediatricians in the Netherlands have been confronted with high numbers of refugee children in their daily practice. Refugee children have been recognized as an at-risk population because they may have an increased burden of physical and mental health conditions, and their caretakers may experience barriers in gaining access to the Dutch health care system. The aim of the study was to gain insight into the barriers in the health care for refugee children perceived by pediatricians by analyzing logistical problems reported through the Dutch Pediatric Surveillance Unit, an online system where pediatricians can report predefined conditions. Pediatricians reported 68 cases of barriers in health care ranging from mild to severe impact on the health outcome of refugee children, reported from November 2015 till January 2017. Frequent relocation of children between asylum seeker centers was mentioned in 28 of the reports on lack of continuity of care. Unknown medical history (21/68) and poor handoffs of medical records resulting in poor communication between health professionals (17/68) contributed to barriers to provide good medical care for refugee children, as did poor health literacy (17/68) and cultural differences (5/68). CONCLUSION: Frequent relocations and the unknown medical history were reported most frequently as barriers impacting the delivery of health care to refugee children. To overcome these barriers, the Committee of International Child Health of the Dutch Society of Pediatrics recommends stopping the frequent relocations, improving medical assessment upon entry in the Netherlands, improving handoff of medical records, and improving the health literacy of refugee children and their families. What is Known: • Pediatricians in the Netherlands are confronted with high numbers of refugee children • Refugee children represent a population that is especially at risk due to their increased burden of physical and mental health conditions What is New: • Refugee children experience barriers in accessing medical care • To start overcoming these barriers, we recommend that frequent relocations be stopped, health assessment upon entry in the Netherlands be improved, medical handoffs be improved, and that the refugees be empowered by increasing their health literacy.


Asunto(s)
Actitud del Personal de Salud , Atención a la Salud/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Pediatras/estadística & datos numéricos , Refugiados/estadística & datos numéricos , Adolescente , Niño , Atención a la Salud/normas , Humanos , Países Bajos , Calidad de la Atención de Salud/normas
14.
J Intellect Disabil Res ; 62(4): 330-338, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-29388276

RESUMEN

BACKGROUND: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD. METHOD: In a retrospective, qualitative study, we conducted semi-structured interviews with the nurses of 12 children with PIMD for whom an EoLD was made within the past 2 years. RESULTS: Parents primarily discuss EoLDs with nurses before and after the meeting with the physician. Nurses who were involved in EoL discussions with parents and physicians assisted them by giving factual information about the child and by providing emotional support. Some nurses, especially nurses from ID-care services, were not involved in EoL discussions, even if they had cared for the child for a long period of time. Some of the nurses had moral or religious objections to carrying out the decisions. CONCLUSION: Most nurses were not involved in EoL discussions with parents and physicians in the hospital. Excluding nurses from EoL discussions can cause them moral distress. The involvement of nurses in EoL discussions for children with PIMD should be improved, especially by involving nurses from ID-care services. Because these nurses are usually familiar with the child, they can be valuable sources of information about the child's quality of life.


Asunto(s)
Actitud del Personal de Salud , Niños con Discapacidad , Relaciones Interprofesionales , Rol de la Enfermera/psicología , Relaciones Profesional-Familia , Cuidado Terminal/métodos , Adulto , Niño , Humanos , Entrevistas como Asunto , Persona de Mediana Edad , Investigación Cualitativa , Estudios Retrospectivos , Cuidado Terminal/psicología , Adulto Joven
15.
Bone ; 108: 89-97, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29289790

RESUMEN

BACKGROUND: Preterm infants are at risk for impaired bone mineralization and growth in length later in life due to inadequate nutritional intake in the early postnatal period. OBJECTIVE: To investigate whether increased nutritional supplementation of calcium, phosphate and protein in Very Low Birth Weight (VLBW) infants during the first 14days after birth was associated with improvement in length and bone development until 9-10years of age. DESIGN: Observational follow-up study of VLBW infants (birth weight<1500g or gestational age<32weeks) born in two consecutive years (eligible infants: 2004 n: 63 and 2005: n: 66). Cohort 2005 received higher intake of calcium, phosphate and protein with parenteral nutrition compared to Cohort 2004. Anthropometric data were collected during standard follow-up visits until five years, and additionally at 9-10years of age including measurements of bone mineral content, bone mineral density of the whole body and lumbar spine determined by dual-energy X-ray absorptiometry. Long-term growth trajectories of both cohorts were evaluated separately for participants born appropriate (AGA) and small for gestational age (SGA), stratified by gender. Multivariate linear regression was used to examine the effect of nutritional intake and clinical covariates on length and bone mineralization. RESULTS: Both cohorts achieved a catch-up in length to SDS within the normal range by 6months (length SDS: estimated mean (95% confidence interval (CI): 6months: Cohort 2004: -0.7 (-1.1, -0.3) Cohort 2005: -0.5 (-0.8, -0.2)). Bone mineral content and density were within the normal range and not different between the cohorts. SGA children achieved a catch-up in length at 5years with bone mineralization comparable to AGA children. Only for girls birth weight was significantly associated with length SDS (per gram: ß 0.001; 95% CI (0.000, 0.003); p=0.03) There was no evidence of an association between early nutritional intake and bone mineralization. CONCLUSION: Children born as appropriate or small for gestational age preterm infants are able to catch up in length after the postnatal period, and achieve a normal length and bone mineralization at age nine-ten years. An improvement of calcium and phosphate intake during the first 14days after birth was not associated with improvement in length and bone development.


Asunto(s)
Desarrollo Óseo/fisiología , Calcificación Fisiológica , Recién Nacido de muy Bajo Peso/fisiología , Fenómenos Fisiológicos de la Nutrición , Índice de Masa Corporal , Niño , Preescolar , Estudios de Cohortes , Femenino , Estudios de Seguimiento , Humanos , Recién Nacido , Masculino , Morbilidad
16.
Res Dev Disabil ; 73: 67-75, 2018 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-29268163

RESUMEN

BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple disabilities (PIMD) remains unknown. AIMS: To determine which elements contribute to QoL according to parents and physicians, how QoL is incorporated into EoLDM and how parents and physicians discuss QoL considerations in the Netherlands. METHODS: Semi-structured interviews were conducted with the physicians and parents of 14 children with PIMD for whom an EoLD had been made within the past two years. RESULTS: Parents and physicians agreed on the main elements that contribute to QoL in children with PIMD. The way in which QoL was incorporated differed slightly for different types of decisions. Parents and physicians rarely discussed elements contributing to the child's QoL when making EoLDS. CONCLUSIONS: and Implications Although QoL was highly important during EoLDM for children with PIMD, parents and physicians did not fully explore the elements that contribute to the child's QoL when they made EoLDs. We recommend the development of a communication tool that will help parents and physicians discuss elements that contribute to QoL and the consequences these elements have for upcoming decisions.


Asunto(s)
Toma de Decisiones , Niños con Discapacidad , Discapacidad Intelectual , Padres , Médicos , Calidad de Vida , Cuidado Terminal , Adolescente , Adulto , Niño , Preescolar , Humanos , Lactante , Recién Nacido , Cuidados para Prolongación de la Vida , Persona de Mediana Edad , Países Bajos , Manejo del Dolor , Investigación Cualitativa , Órdenes de Resucitación , Adulto Joven
17.
Pediatr Hematol Oncol ; 34(1): 10-16, 2017 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-28276750

RESUMEN

Low iron stores in children, absolute iron deficiency (AID), can lead to impaired neurodevelopment and requires iron therapy. In the presence of infection/inflammation, like in cystic fibrosis (CF), serum ferritin (SF) is not a reliable biomarker for AID. Red blood cell distribution width (RDW) is a promising alternative reported not to be influenced by infection in healthy children. Currently, there are no data on the diagnostic capacity of RDW to detect AID in pediatric CF patients. This was a prospective observational study that investigated iron status biomarkers in 53 Dutch pediatric CF patients. AID was defined using World Health Organization criteria for SF in stable patients (no recent pulmonary exacerbation) and C-reactive protein (CRP) ≤10 mg/l. Patients with AID had higher RDW levels than patients without AID (p = 0.019). An RDW ≥13.2% showed the following test statistics: sensitivity 100%; specificity 39.4%; positive predictive value 20%; and negative predictive value 100%. Furthermore, we found a correlation between RDW and CRP in the total group that originated from the stable patients (r = 0.308; p = 0.042). In conclusion, the diagnostic capacity of RDW for detecting AID in pediatric CF patients seems limited because RDW levels might also be influenced by chronic infection/inflammation in these patients.


Asunto(s)
Fibrosis Quística/sangre , Índices de Eritrocitos , Deficiencias de Hierro , Hierro/sangre , Adolescente , Biomarcadores/sangre , Niño , Preescolar , Femenino , Humanos , Masculino , Países Bajos , Estudios Prospectivos
18.
J Immunol Methods ; 445: 45-52, 2017 06.
Artículo en Inglés | MEDLINE | ID: mdl-28274838

RESUMEN

Studies on immune cells derived from the human intestine are needed to understand the pathogenesis of gastrointestinal diseases and to develop novel treatment strategies. Isolation techniques to extract these immune cells from intestinal tissue are largely based on murine studies and comparative data on isolation from human intestine is scarce. In this study we evaluated cell yield, viability, and surface-molecule expression on mononuclear leukocytes, comparing three techniques to obtain a single immune cell suspension from human intestine; low concentrations of either the enzymes Collagenase D or Liberase TL, and enzyme-free mechanical dissociation with the Medimachine. Both enzymatic isolation techniques provided a higher cell yield than mechanical dissociation. Expression of surface molecules remained intact after Collagenase D treatment, while Liberase TL digestion resulted in a strong decrease in the expression of the CD4 receptor. Taken together, Collagenase D digestion provides the highest yield of mononuclear cells while keeping surface molecule expression intact.


Asunto(s)
Colagenasas/metabolismo , Citometría de Flujo , Intestinos/citología , Leucocitos Mononucleares/citología , Termolisina/metabolismo , Humanos , Mucosa Intestinal/metabolismo , Intestinos/inmunología , Leucocitos Mononucleares/inmunología , Leucocitos Mononucleares/metabolismo
19.
J Perinatol ; 37(6): 690-694, 2017 06.
Artículo en Inglés | MEDLINE | ID: mdl-28181998

RESUMEN

OBJECTIVE: To determine the natural course of zinc protoporphyrin/heme ratio (ZnPP/H) and its role in the detection of iron deficiency (ID) and iron-deficiency anemia (IDA) in the first 4 months of life in moderately preterm infants. STUDY DESIGN: ZnPP/H was measured at 1 week, 6 weeks and 4 months postnatal age in a prospective cohort of 161 Dutch infants born at a gestational age of 32+0 to 36+6 weeks who did not receive an erythrocyte transfusion or iron supplementation. RESULTS: ZnPP/H levels decreased in the first 6 weeks and increased thereafter. At 4 months postnatal age, ZnPP/H was higher in the 11 (8.5%) infants with IDA (mean (s.d.): 260.8 (16.1)) but not in the 27 (21.3%) infants with ID (mean (s.d.): 177.0 (15.1)) compared with normal infants (mean (s.d.): 157.3 (12.5)). CONCLUSION: In moderately preterm infants, ZnPP/H can be of additional value to detect infants at risk for IDA due to iron-deficient erythropoiesis at 4 months of age.


Asunto(s)
Anemia Ferropénica/diagnóstico , Hemo/análisis , Recien Nacido Prematuro/sangre , Deficiencias de Hierro , Protoporfirinas/sangre , Anemia Ferropénica/sangre , Femenino , Ferritinas/sangre , Edad Gestacional , Pruebas Hematológicas , Humanos , Lactante , Recién Nacido , Hierro/sangre , Modelos Lineales , Masculino , Países Bajos , Estudios Prospectivos , Curva ROC
20.
Child Care Health Dev ; 43(3): 369-384, 2017 05.
Artículo en Inglés | MEDLINE | ID: mdl-27774638

RESUMEN

BACKGROUND: High levels of maltreatment are found in children who are identified because their parents visit the emergency department due to partner violence, substance abuse or suicide attempt. However, it is unknown if these children experience psychosocial problems. This study aims to assess their levels of post-traumatic stress, anxiety, depression, behavioural problems and health-related quality of life. METHODS: A cross-sectional study was conducted in six hospitals. All consecutive families of which a parent visited the emergency department due to partner violence, substance abuse or suicide attempt between 1 July 2012 and 1 March 2014 with children aged 1.5-17 years were approached for participation. Parents and children aged 8 years and older filled out questionnaires measuring post-traumatic stress [13-item version of Children's Revised Impact of Event Scale (CRIES-13)], anxiety, depression (Revised Child Anxiety and Depression Scale), behavioural problems [Child Behavior Checklist (CBCL) and Youth Self-Report (YSR)] and health-related quality of life (PedsQL). Scores of participants were compared with reference data obtained in children in similar age ranges from representative Dutch community samples (CRIES-13, Revised Child Anxiety and Depression Scale, PedsQL and CBCL) and to a normed cutoff score (CRIES-13). RESULTS: Of 195 eligible families, 89 (46%) participated in the study. Participating children did not score different from community children, both on child-reported and parent-reported instruments. Standardized mean differences of total sum scores were 0 (CRIES-13 and CBCL 1.5-5), 0.1 (YSR), 0.2 (CBCL 6-18) and -0.3 (PedsQL) and not statistically different from community children. Thirty-five percent of the participating children scored above the cutoff score on the CRIES-13, indicating post-traumatic stress disorder, but this difference was not statistically significant from community children (mean difference 8%; 95% CI -4-22%). CONCLUSIONS: We found no differences in psychosocial problems between children whose parents visited the emergency department due to partner violence, substance abuse or suicide attempt and children from community samples. Because 35% of the children scored in the range of post-traumatic stress disorder, we advise healthcare providers to pay attention to post-traumatic stress symptoms.


Asunto(s)
Trastornos de la Conducta Infantil/diagnóstico , Hijo de Padres Discapacitados/psicología , Servicio de Urgencia en Hospital , Padres , Maltrato Conyugal/psicología , Trastornos por Estrés Postraumático/diagnóstico , Trastornos Relacionados con Sustancias/psicología , Intento de Suicidio/psicología , Adolescente , Síntomas Afectivos , Niño , Trastornos de la Conducta Infantil/psicología , Preescolar , Estudios Transversales , Servicio de Urgencia en Hospital/estadística & datos numéricos , Femenino , Humanos , Lactante , Masculino , Países Bajos/epidemiología , Escalas de Valoración Psiquiátrica , Calidad de Vida , Encuestas y Cuestionarios
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