Monique van Dijk

Interdisciplinary structural follow-up of surgical newborns: a prospective evaluation

BACKGROUNDnInformation on physical and developmental outcomes of children with anatomical congenital anomalies (CAs) may indicate the need for early intervention and reduce impact on the childs life and parental burden.nnnMETHODSnFrom 1999 to 2003, 101 children with CA (76.5% of initial survivors) were seen 6-monthly in a tertiary childrens hospital. Growth, neurologic outcome, mental and psychomotor development as determined with the Bayley Scales of Infant Development, and categorization of predictive sociodemographic and medical variables of the children were evaluated prospectively and longitudinally.nnnRESULTSnCongenital diaphragmatic hernia (CDH) and esophageal atresia patients showed impaired growth, that is, both height for age (-1.5 standard deviation score [SDS]) and weight for height (-1.0 SDS). Overall neurologic outcome was normal, however, suspect or abnormal for 40% of CDH patients. Overall mental development was normal, but psychomotor scores were significantly lower than the norm (95% confidence interval, 83.8-92.2 at 6 months and 87.9-98.5 at 24 months). Sex, maternal age, socioeconomic status, CA, severity-of-disease covariables, and need of medical appliances at home could predict negative outcome significantly (P < .05).nnnCONCLUSIONSnThe CA survivors show impaired growth and psychomotor developmental delay up to age 2 years. This warrants specific follow-up programs and infrastructure for these patients.

A prospective comparative evaluation of persistent respiratory morbidity in esophageal atresia and congenital diaphragmatic hernia survivors

PURPOSEnThe aim of the study was to compare long-term respiratory morbidity in children after repair of esophageal atresia (EA) or congenital diaphragmatic hernia (CDH).nnnPATIENTS AND METHODSnChildren were seen at 6, 12, and 24 months and 5 years within a prospective longitudinal follow-up program in a tertiary childrens hospital. Respiratory morbidity and physical condition were evaluated at all moments. At age 5 years, pulmonary function and maximal exercise performance were tested.nnnRESULTSnIn 3 of 23 atresia patients and 10 of 20 hernia patients, bronchopulmonary dysplasia was developed. Seventeen atresia and 11 hernia patients had recurrent respiratory tract infections mainly in the first years of life. At age 5, 25% of EA and CDH patients measured showed reduced forced expiratory volume in 1 second (z-score < -2). Both atresia and hernia patients showed impaired growth, with catch-up growth at 5 years in patients with EA but not in those with hernia. Maximal exercise performance was significantly below normal for both groups.nnnCONCLUSIONSnEsophageal atresia and CDH are associated with equal risk of long-term respiratory morbidity, growth impairment, and disturbed maximal exercise performance. Prospective follow-up of EA patients aimed at identifying respiratory problems other than tracheomalacia should be an integral part of interdisciplinary follow-up programs.

The COMFORT-behavior scale is useful to assess pain and distress in 0- to 3-year-old children with Down syndrome.

Summary Psychometric properties of the COMFORT‐Behavior scale were comparable between 0‐ to 3‐year‐old children with and without Down syndrome. ABSTRACT Many pediatric intensive care units use the COMFORT‐Behavior scale (COMFORT‐B) to assess pain in 0‐ to 3‐year‐old children. The objective of this study was to determine whether this scale is also valid for the assessment of pain in 0‐ to 3‐year‐old children with Down syndrome. These children often undergo cardiac or intestinal surgery early in life and therefore admission to a pediatric intensive care unit. Seventy‐six patients with Down syndrome were included and 466 without Down syndrome. Pain was regularly assessed with the COMFORT‐B scale and the pain Numeric Rating Scale (NRS). For either group, confirmatory factor analyses revealed a 1‐factor model. Internal consistency between COMFORT‐B items was good (Cronbach’s α = 0.84–0.87). Cutoff values for the COMFORT‐B set at 17 or higher discriminated between pain (NRS pain of 4 or higher) and no pain (NRS pain below 4) in both groups. We concluded that the COMFORT‐B scale is also valid for 0‐ to 3‐year‐old children with Down syndrome. This makes it even more useful in the pediatric intensive care unit setting, doing away with the need to apply another instrument for those children younger than 3.

Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis

BackgroundThe objective of this study was to validate the Impact of a Child with Congenital Anomalies on Parents (ICCAP) questionnaire. ICCAP was newly designed to assess the impact of giving birth to a child with severe anatomical congenital anomalies (CA) on parental quality of life as a result of early stress.MethodsAt 6 weeks and 6 months after birth, mothers and fathers of 100 children with severe CA were asked to complete the ICCAP questionnaire and the SF36. The ICCAP questionnaire measures six domains: contact with caregivers, social network, partner relationship, state of mind, child acceptance, and fears and anxiety. Reliability (i.e. internal consistency and test-retest) and validity were tested and the ICCAP was compared to the SF-36.ResultsConfirmatory factor analysis resulted in 6 six a priori constructed subscales covering different psychological and social domains of parental quality of life as a result of early stress. Reliability estimates (congeneric approach) ranged from .49 to .92. Positive correlations with SF-36 scales ranging from .34 to .77 confirmed congruent validity. Correlations between ICCAP subscales and childrens biographic characteristics, primary CA, and medical care as well as parental biographic and demographic variables ranged from -.23 to .58 and thus indicated known-group validity of the instrument. Over time both mothers and fathers showed changes on subscales (Cohens d varied from .07 to .49), while the test-retest reliability estimates varied from .42 to .91.ConclusionThe ICCAP is a reliable and valid instrument for clinical practice. It enables early signaling of parental quality of life as a result of early stress, and thus early intervention.

Does postoperative 'M' technique® massage with or without mandarin oil reduce infants' distress after major craniofacial surgery?

AIMnThis article is a report of a randomized controlled trial of the effects of M technique massage with or without mandarin oil compared to standard postoperative care on infants levels of pain and distress, heart rate and mean arterial pressure after major craniofacial surgery.nnnBACKGROUNDnThere is a growing interest in non-pharmacological interventions such as aromatherapy massage in hospitalized children to relieve pain and distress but well performed studies are lacking.nnnMETHODSnThis randomized controlled trial allocated 60 children aged 3-36 months after craniofacial surgery from January 2008 to August 2009 to one of three conditions; M technique massage with carrier oil, M technique massage with mandarin oil or standard postoperative care. Primary outcome measures were changes in COMFORT behaviour scores, Numeric Rating Scale pain and Numeric Rating Scale distress scores assessed from videotape by an observer blinded for the condition.nnnRESULTSnIn all three groups, the mean postintervention COMFORT behaviour scores were higher than the baseline scores, but differences were not statistically significant. Heart rate and mean arterial pressure showed a statistically significant change across the three assessment periods in all three groups. These changes were not related with the intervention.nnnCONCLUSIONSnResults do not support a benefit of M technique massage with or without mandarin oil in these young postoperative patients. Several reasons may account for this: massage given too soon after general anaesthesia, young patients fear of strangers touching them, patients not used to massage.

PAIN MANAGEMENT IN INTELLECTUALLY DISABLED CHILDREN: ASSESSMENT, TREATMENT, AND TRANSLATIONAL RESEARCH

The primary focus of pain research in intellectually disabled individuals is still on pain assessment. Several observational pain assessment scales are available, each with its own characteristics, its own target group and its own validated use. Observational studies report differences in the treatment of intra- and postoperative pain of intellectually disabled children and almost all children with intellectual disability have comorbidities that need to be addressed. The scope of research has started to broaden. In this review we aim to answer the question: Can we integrate validated ways of pain assessment and postoperative pain treatment in intellectually disabled children to develop specific analgesic algorithms? Regrettably there is little knowledge on possible interaction effects and other relevant pharmacological issues. Possible genotype-phenotype associations related to pain in children with Down syndrome have several promises as six possible candidate genes are located on chromosome 21. In conclusion, the pain assessment tools for intellectually disabled children are there. We should now focus on tailoring the pain treatment. To this aim we need to perform pharmacokinetic and pharmacodynamic studies of analgesics and obtain information about the genotype-phenotype relationships for pain. This can lead to the development of specific analgesic algorithms.

Long-Term Effects of Neonatal Morphine Infusion on Pain Sensitivity: Follow-Up of a Randomized Controlled Trial

Short-term and long-term effects of neonatal pain and its analgesic treatment have been topics of translational research over the years. This study aimed to identify the long-term effects of continuous morphine infusion in the neonatal period on thermal pain sensitivity, the incidence of chronic pain, and neurological functioning. Eighty-nine of the 150 participants of a neonatal randomized controlled trial on continuous morphine infusion versus placebo during mechanical ventilation underwent quantitative sensory testing and neurological examination at the age of 8 or 9 years. Forty-three children from the morphine group and 46 children from the placebo group participated in this follow-up study. Thermal detection and pain thresholds were compared with data from 28 healthy controls. Multivariate analyses revealed no statistically significant differences in thermal detection thresholds and pain thresholds between the morphine and placebo groups. The incidence of chronic pain was comparable between both groups. The neurological examination was normal in 29 (76%) of the children in the morphine group and 25 (61%) of the children in the control group (P = .14). We found that neonatal continuous morphine infusion (10 μg/kg/h) has no adverse effects on thermal detection and pain thresholds, the incidence of chronic pain, or overall neurological functioning 8 to 9 years later. Perspective: This unique long-term follow-up study shows that neonatal continuous morphine infusion (10 μg/kg/h) has no long-term adverse effects on thermal detection and pain thresholds or overall neurological functioning. These findings will help clinicians to find the most adequate and safe analgesic dosing regimens for neonates and infants.

Pain sensitivity of children with Down syndrome and their siblings: quantitative sensory testing versus parental reports

The aim of this study was to compare thermal detection and pain thresholds in children with Down syndrome with those of their siblings.

Telephone helpline for parents of children with congenital anomalies.

AIMnThis paper is a report of a study to evaluate how often and for what reason parents of children born with severe anatomical congenital anomalies use a 24-hour telephone helpline, and to identify differences between callers and non-callers.nnnBACKGROUNDnChildren born with severe congenital anomalies often remain dependent on medical care and technology after discharge. Adequate medical consultation in the home situation may lower parental burden.nnnMETHODnObservational study of telephone contacts from 2000 to 2006 with parents of congenital anomaly patients discharged home after neonatal intensive care admission. Frequency of telephone calls was categorized per type of anomaly. Resulting interventions in terms of consultation and hospital admission were recorded. Finally, costs of personnel needed to provide 24-hour telephone helpline availability were calculated.nnnFINDINGSnA total of 670 calls occurred outside office hours, from 34.4% of all parents; 23.7% of these calls concerned feeding problems. Parents of children with oesophageal atresia, urogenital malformation and congenital diaphragmatic hernia called most frequently (44.3-50.6%). Non-callers were more often first-time parents, divorced/separated or immigrants. Nurses handled 24.5% of calls by themselves and 20.2% of calls led to emergency room consultations resulting in 4.9% admissions. First contact took place at median age 3 months, last contact at median age 8 months. Total personnel costs amounted to euro27,191 per year.nnnCONCLUSIONnA 24-hour telephone helpline provides easy access to medical and supportive care for parents of children with congenital anomalies at relatively low cost. Nurses can effectively run this telephone helpline with paediatrician back-up.

Thermal detection thresholds in 5-year-old preterm born children; IQ does matter.

BACKGROUNDnExperiencing pain at newborn age may have consequences on ones somatosensory perception later in life. Childrens perception for cold and warm stimuli may be determined with the Thermal Sensory Analyzer (TSA) device by two different methods.nnnAIMnThis pilot study in 5-year-old children born preterm aimed at establishing whether the TSA method of limits, which is dependent of reaction time, and the method of levels, which is independent of reaction time, would yield different cold and warm detection thresholds. The second aim was to establish possible associations between intellectual ability and the detection thresholds obtained with either method.nnnSTUDY DESIGNnA convenience sample was drawn from the participants in an ongoing 5-year follow-up study of a randomized controlled trial on effects of morphine during mechanical ventilation.nnnMETHODSnThresholds were assessed using both methods and statistically compared. Possible associations between the childs intelligence quotient (IQ) and threshold levels were analyzed.nnnRESULTSnThe method of levels yielded more sensitive thresholds than did the method of limits, i.e. mean (SD) cold detection thresholds: 30.3 (1.4) versus 28.4 (1.7) (Cohensd=1.2, P=0.001) and warm detection thresholds; 33.9 (1.9) versus 35.6 (2.1) (Cohens d=0.8, P=0.04). IQ was statistically significantly associated only with the detection thresholds obtained with the method of limits (cold: r=0.64, warm: r=-0.52).nnnDISCUSSIONnThe TSA method of levels, is to be preferred over the method of limits in 5-year-old preterm born children, as it establishes more sensitive detection thresholds and is independent of IQ.