Minne Fekkes

Problem behavior of individuals with down syndrome in a nationwide cohort assessed in late adolescence

OBJECTIVE To assess problem behavior in adolescents with Down syndrome and examine the association with sex and severity of intellectual disability. STUDY DESIGN Cross-sectional data of a Dutch nationwide cohort of Down syndrome children aged 16-19 years were collected using a written parental questionnaire. Problem behavior was measured using the Child Behavior Checklist and compared with normative data. The degree of intellectual disability was determined using the Dutch Social competence rating scale. RESULTS The response rate was 62.8% (322/513), and the mean age 18.3 years (SD ± 0.8). The total score for problem behavior was higher in adolescents with Down syndrome than in adolescents without Down syndrome (26.8 vs 16.5; P < .001). Overall, 51% of adolescents with Down syndrome had problem scores in the clinical or borderline range on 1 or more Child Behavior Checklist subscales; this is more than twice as high as adolescents without Down syndrome. Adolescents with Down syndrome had more internalizing problems than their counterparts without Down syndrome (14% and 9%, respectively, in the clinical range); the percentages for externalizing problems were almost equal (7% and 9%, respectively, in the clinical range). The highest problem scores in adolescents with Down syndrome were observed on the social problems and thought problems subscales (large to very large standardized differences). Male sex and/or more severe mental disabilities were associated with more behavioral problems. CONCLUSIONS Serious problem behavior is more prevalent in adolescents with Down syndrome. This demonstrates the need for a focus on general behavior improvement and on the detection and treatment of specific psychopathology in individuals with Down syndrome.

A new protocol for screening adults presenting with their own medical problems at the Emergency Department to identify children at high risk for maltreatment

Identifying child abuse and neglect solely on the grounds of child characteristics leaves many children undetected. We developed a new approach (Hague protocol) based on characteristics of parents who attend the Emergency Department (ED) because they have the following problems: (1) intimate partner violence, (2) substance abuse, or (3) suicide attempt or other serious psychiatric problems. The goal of this protocol is to enable the Reporting Center for Child Abuse and Neglect (RCCAN) to rapidly assess family problems and offer voluntary community based support to these parents. The aim of this study is to assess whether this protocol for screening adults presenting for care in the Emergency Department can identify children at high risk for maltreatment. A before and after study was conducted at 9 EDs in 3 regions in the Netherlands (one intervention region and 2 control regions). During the period January 2006 to November 2007, prior to the introduction of the Hague protocol, from a total of 385,626 patients attending the ED in the intervention region 4 parents (1 per 100,000) were referred to the RCCAN. In the period after introduction of the protocol (December 2007 to December 2011), the number rose to 565 parents from a total of 885,301 patients attending the ED (64 per 100,000). In the control region, where the protocol was not implemented, these figures were 2 per 163,628 (1 per 100,000) and 10 per 371,616 (3 per 100,000) respectively (OR=28.0 (95 CI 4.6-170.7)). At assessment, child abuse was confirmed in 91% of referred cases. The protocol has a high positive predictive value of 91% and can substantially increase the detection rate of child abuse in an ED setting. Parental characteristics are strong predictors of child abuse. Implementing guidelines to detect child abuse based on parental characteristics of parents attending the adult section of the ED can increase the detection rate of child abuse and neglect allowing appropriate aid to be initiated for these families.

Practical and social skills of 16-19-year-olds with Down syndrome: Independence still far away

Survival of children with Down syndrome (DS) has improved considerably, but insight into their level of daily functioning upon entering adulthood is lacking. We collected cross-sectional data from a Dutch nationwide cohort of 322 DS adolescents aged 16-19 (response 62.8%) to assess the degree to which they master various practical and social skills, using the Dutch Social competence rating scale and the Childrens Social Behavior Questionnaire. Up to 60% mastered some of the skills required for independent functioning, such as maintaining adequate standards of personal hygiene and preparing breakfast. Less than 10% had achieved basic skills such as basic cooking and paying in a shop. It is difficult for DS people to master all the skills necessary to live independently. Ninety percent of adolescents with DS experience significant problems in social functioning.

Detecting child abuse based on parental characteristics: Does The Hague Protocol cause parents to avoid the Emergency Department?

OBJECTIVES The Hague Protocol is used by professionals at the adult Emergency Departments (ED) in The Netherlands to detect child abuse based on three parental characteristics: (1) domestic violence, (2) substance abuse or (3) suicide attempt or self-harm. After detection, a referral is made to the Reporting Center for Child Abuse and Neglect (RCCAN). This study investigates whether implementing this Protocol will lead parents to avoid medical care. METHOD We compared the number of patients (for whom the Protocol applied) who attended the ED prior to implementation with those attending after implementation. We conducted telephone interviews (n = 14) with parents whose children were referred to the RCCAN to investigate their experience with the procedure. RESULTS We found no decline in the number of patients, included in the Protocol, visiting the ED during the 4 year implementation period (2008-2011). Most parents (n = 10 of the 14 interviewed) were positive and stated that they would, if necessary, re-attend the ED with the same complaints in the future. CONCLUSION ED nurses and doctors referring children based on parental characteristics do not have to fear losing these families as patients.

Facilitators and barriers to the successful implementation of a protocol to detect child abuse based on parental characteristics

To determine the critical facilitating and impeding factors underlying successful implementation of a method to detect child abuse based on parental rather than child characteristics known as the Hague Protocol. The original implementation region of the protocol (The Hague) was compared to a new implementation region (Friesland), using analysis of referrals, focus group interviews (n=6) at the Emergency departments (ED) and at the Reporting Centers for Child abuse and Neglect (RCCAN) as well as questionnaires (n=76) at the EDs. Implementation of the Hague Protocol substantially increased the number of referrals to the RCCAN in both regions. In Friesland, the new implementation region, the number of referrals increased from 2 out of 92,464 patients (three per 100,000) to 108 out of 167,037 patients (62 per 100,000). However in Friesland, child abuse was confirmed in a substantially lower percentage of cases relative to the initial implementation region (62% vs. 91%, respectively). Follow-up analyses suggest that this lower positive predictive value may be due to the lack of training for RCCAN professionals concerning the Hague Protocol. The focus group interviews and questionnaires point to time limitations as the main impediment for implementation, whereas an implementation coach has been mentioned as the most important facilitating factor for success. The Hague Protocol can be used to detect child abuse beyond the initial implementation region. However, training is essential in order to assure a consistent evaluation by the RCCAN.

Mainstream and Special School Attendance among a Dutch Cohort of Children with Down Syndrome

Object To determine the level of mainstream education in a nationwide cohort of adolescents with Down Syndrome (DS), and to find characteristics related to mainstream or special school attendance. Method Dutch children with DS born in 1992, 1993 or 1994, were assessed when 16–19 years old. Parents scored school enrolment between the age of 4–18 years, general characteristics and the levels of intellectual disability using the Dutch Social Competence Rating Scale. Associations between disability and years in mainstream school were assessed by ordinal logistic regression, adjusting for sex and parental education. Results We collected data from 170 boys and 152 girls (response 63%); mean age 18.3 years (ranges 16.8–19.9). Intellectual disability was mostly moderate (43%). Most children (74%) entered mainstream education between 4 and 6 years of age. At 13 years 17% was in mainstream school and 7% stayed in up to 16 years. From the age of 8 years onwards the majority was in special education, while 6% never attended school. Girls were more often in mainstream school and stayed in longer. Level of disability was significantly associated with number of years in mainstream education. Conclusion Three out of four Dutch children with DS entered mainstream primary education, however late entry and high dropout are common.

What parental characteristics can predict child maltreatment at the emergency department? Considering expansion of the hague protocol

The Hague Protocol considers three parental characteristics of Emergency Department adult patients to identify child abuse: (a) domestic violence, (b) intoxication, and (c) suicide attempt or auto mutilation. This study investigated whether additional parental characteristics could be included to improve the chance of detection. Using a nested case–control design, we compared parents identified as child abusers who were missed by the Protocol with a matched group of nonabusing parents. The parental characteristics used were, among others, all physical injuries possibly resulting from domestic violence, psychological, or mental complaints that might indicate elevated domestic stress levels and the number of Emergency Department visits during the previous year. None of the characteristics were statistically significantly associated with child abuse. The Hague Protocol will not be improved by adding one or more of the characteristics that were investigated.

83 Level of Self-Sufficiency of Young People with Down Syndrome (Age 16–19 Years Old) Oral presentation

Background and aims Becoming independent is for young people with Down syndrome (DS) not a standard development, because of their intellectual impairment. Parents often wonder what level their child with DS might reach. This study aims to measure the level of self-sufficiency and problem behaviour in a large population based sample of 16–19-year-old people with DS. Methods Parents of Dutch children with DS born in 1992, 1993 and 1994 were invited to participate (n=513). Data were collected by a written questionnaire for the parents, containing the Dutch SRZ (measuring social independence), the Child Behaviour Checklist, the Children’s Social Behaviour Questionnaire, and additional questions on skills and background. Differences between mean values were evaluated using t-tests. Results Mean age of the 322 participating young people with DS was 18.3 years (52.8% boys). Considering their basic daily skills, they reached a level of around 70% of independent functioning. Girls had a higher level of functioning than boys (p<0.001), except for the subscale social orientation. With regards to behaviour problems the young people with DS had more behavioural problems on the subscales social problems, thought problems and attention problems. Only on the subscale anxious/depressed young people with DS scored fewer problems (p<0.001). Social problems were most present in the subscales orientation problems, not understanding social situations, and resistance to changes. Conclusions Young people with DS do not reach a complete level of independent functioning. Behavioural and social problems have an important contribution to the limited self-sufficiency of this group.

Impact of Respiratory Tract Infections on Developmental Skills in Children With Down Syndrome

Background and aims: Recurrent respiratory tract infections (RRTI) have a significant impact on the developmental age of children with Down Syndrome (DS). Since RRTI are related to impaired hearing we proposed that verbal skills are more influenced compared to perceptual-performance, quantitative, memory and motor development in these children.Methods: During a 3-year period, all members of the Dutch DS Foundation with an 8-year-old child with DS were asked to participate in this study. If parents agreed, a psychological assistant administrated the McCarthy Scales of Childrens Abilities. Based on parental report, the children were divided into increased RRTI (RRTI+) and no increased RRTI (RRTI-). Linear regression analyses were performed to assess the effect of RRTI on the outcomes and the interaction with impaired hearing, adjusted for confounders.Results: Compared to RRTI- children (n=176; missing data n=12), RRTI+ children (n=149, 46%) showed lower mean developmental age (3.67 vs. 4.08 years). Impaired hearing was more common in RRTI+ (44% vs 18%, p-values< 0.001). RRTI+ children had lower scores on all scales (verbal, perceptual-performance, quantitative, memory and motor development; p-values < .001) with equal effect sizes (f2=.03-.04). Interaction with impaired hearing was not observed.Conclusions: RRTI are related to delayed development in 8-year-old DS children. Although hearing loss is a common problem in RRTI+ children with DS, it does not lead to a more profound decrease in verbal skills compared to other domains of development. Since RRTI are potentially preventable, further studies should focus on causes and improved treatment of RRTI in children with DS.