Parent perspectives on the assessment of quality of life of their children with profound intellectual and multiple disabilities in the Netherlands.

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.

Maternal stress in the postpartum period is associated with altered human milk fatty acid composition.

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.

Distress and post-traumatic stress in parents of patients with congenital gastrointestinal malformations: a cross-sectional cohort study.

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.

The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study.

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.

Association of a Family Integrated Care Model With Paternal Mental Health Outcomes During Neonatal Hospitalization.

Importance: During newborn hospitalization in the neonatal unit, fathers often feel anxious and excluded from their child's caregiving and decision-making. Few studies and interventions have focused on fathers' mental health and their participation in neonatal care. Objective: To study the association of a family integrated care (FICare) model (in single family rooms with complete couplet-care for the mother-newborn dyad) vs standard neonatal care (SNC) in open bay units with separate maternity care with mental health outcomes in fathers at hospital discharge of their preterm newborn and to study whether parent participation was a mediator of the association of the FICare model on outcomes. Design, Setting, and Participants: This prospective, multicenter cohort study was conducted from May 2017 to January 2020 as part of the fAMily Integrated Care in the Neonatal Ward Study, at level-2 neonatal units in the Netherlands (1 using the FICare model and 2 control sites using SNC). Participants included fathers of preterm newborns admitted to participating units. Data analysis was performed from January to April 2021. Exposure: FICare model in single family rooms with complete couplet-care for the mother-newborn dyad during maternity and/or neonatal care. Main Outcomes and Measures: Paternal mental health was measured using the Parental Stress Scale: NICU, Hospital Anxiety and Depression Scale, Post-partum Bonding Questionnaire, Perceived (Maternal) Parenting Self-efficacy Scale, and satisfaction with care (EMpowerment of PArents in THe Intensive Care-Neonatology). Parent participation (CO-PARTNER tool) was assessed as a potential mediator of the association of the FICare model with outcomes with mediation analyses (prespecified). Results: Of 309 families included in the fAMily Integrated Care in the Neonatal Ward Study, 263 fathers (85%) agreed to participate; 126 fathers were enrolled in FICare and 137 were enrolled in SNC. In FICare, 89 fathers (71%; mean [SD] age, 35.1 [4.8] years) responded to questionnaires and were analyzed. In SNC, 93 fathers (68%; mean [SD] age, 36.4 [5.5] years) responded to questionnaires and were analyzed. Fathers in FICare experienced less stress (adjusted ß, -10.02; 95% CI, -15.91 to -4.13; P = .001) and had higher participation scores (adjusted odds ratio, 3.424; 95% CI, 0.860 to 5.988; P = .009) compared with those in SNC. Participation mediated the beneficial association of the FICare model with fathers' depressive symptoms (indirect effect, -0.051; 95% CI, -0.133 to -0.003) and bonding with their newborns (indirect effect, -0.082; 95% CI, -0.177 to -0.015). Conclusions and Relevance: These findings suggest that the FICare model is associated with decreased paternal stress at discharge and enables fathers to be present and participate more than SNC, thus improving paternal mental health. Supporting fathers to actively participate in all aspects of newborn care should be encouraged regardless of architectural design of the neonatal unit.

Chronically ill children's participation and health outcomes in shared decision-making: a scoping review.

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.

Intestinal CD8+ T cell responses are abundantly induced early in human development but show impaired cytotoxic effector capacities.

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.

Application of PECARN rules would significantly decrease CT rates in a Dutch cohort of children with minor traumatic head injuries.

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.

Altered materno-fetal transfer of 13C-polyunsaturated fatty acids in obese pregnant women.

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.

Effects of a high-protein intake on metabolic targets for weight loss in children with obesity: a randomized trial.

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.

Human Milk Oligosaccharides in Colostrum and Mature Milk of Chinese Mothers: Lewis Positive Secretor Subgroups.

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.

Increased incidence of necrotizing enterocolitis associated with routine administration of Infloran™ in extremely preterm infants.

We aimed to evaluate the isolation of strains contained in the Infloran™ probiotic preparation in blood cultures and its efficacy in reducing necrotizing enterocolitis (NEC) and late-onset sepsis (LOS) in extremely preterm infants. Routine use of probiotics was implemented in 2008. Infants born at <28 weeks gestational age were prospectively followed and compared with historical controls (HC) born between 2005 and 2008. Data on sepsis due to any of the two probiotic strains contained in Infloran and rates of LOS and NEC were analysed. A total of 516 infants were included. During the probiotic period (PC), none of the strains included in the administered probiotic product were isolated from blood cultures. Probiotic administration was associated with an increase in NEC stage II or higher (HC 10/170 [5.9%]; PC 46/346 [13.3%]; P=0.010). Surgical NEC was 12.1% in PC (42/346) versus 5.9% (10/170) in HC (P=0.029). Adjusting for confounders (sex, gestational age, antenatal steroids and human milk) did not change those trends (P=0.019). Overall, clinical LOS and the incidence of staphylococcal sepsis were lower in PC (172/342, 50.3, and 37%, respectively) compared with HC (102/169, 60.3 and 50.9%, respectively) (P=0.038 and P=0.003, respectively). No episodes of sepsis attributable to the probiotic product were recorded. The period of probiotic administration was associated with an increased incidence of NEC after adjusting for neonatal factors, but also with a reduction in the LOS rate.

Pediatrician-experienced barriers in the medical care for refugee children in the Netherlands.

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.

Involvement of nurses in end-of-life discussions for severely disabled children.

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.

Effect of early nutritional intake on long-term growth and bone mineralization of former very low birth weight infants.

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.

Considering quality of life in end-of-life decisions for severely disabled children.

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.

Red blood cell distribution width is not a reliable biomarker for low iron stores in children with cystic fibrosis.

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.

Quantitative comparison of human intestinal mononuclear leukocyte isolation techniques for flow cytometric analyses.

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.