Publications by authors named "Anne Marie Oudesluys-Murphy"

39 Publications

Specialized outpatient clinic for deaf and hard-of-hearing patients in the Netherlands: Lessons learned in an attempt to improve health care.

J Eval Clin Pract 2020 Dec 26;26(6):1588-1591. Epub 2020 Feb 26.

Department of Pediatrics, Leiden University Medical Centre, Leiden, The Netherlands.

Rationale, Aims, And Objective: A group of organizations and individuals in the Netherlands collaborated to attempt to improve access to health care and health education for deaf and hard of hearing (DHH) patients in the country. The outcome was the start of a specialized outpatient clinic named PoliDOSH. An independent research group was set up to evaluate the effect of this specialized clinic. Even though the initiative did not succeed and was closed after 2 years, an extensive analysis of the start-up and functioning of the whole process was made.

Methods: Structured and nonstructured questionnaires and structured interviews.

Results: Only a small group of DHH patients indicated that they felt a need for consultations at the PoliDOSH. It became clear that to ensure successful functioning of a specialized facility the team members should include a representative group of DHH members. All key functions should be filled by top experts in the relevant fields as well as an expert in communication and needs of the target group.

Conclusions: There is a great need for facilities to collect and disseminate information to and about DHH patients. The information should be aimed at providing psycho-education for the DHH persons themselves and health care professionals, concerning the specific needs and problems of this patient group. If a similar facility is set up in the future, thorough market research prior to start up is needed to enable the facility to connect with the needs of patients. The start-up period should allow sufficient time for the project to become known and for patients to become familiar with it and trust it.
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http://dx.doi.org/10.1111/jep.13369DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7687197PMC
December 2020

Quality of life of children with hearing loss in special and mainstream education: A longitudinal study.

Int J Pediatr Otorhinolaryngol 2020 Jan 5;128:109701. Epub 2019 Oct 5.

Department of Otorhinolaryngology and Head & Neck Surgery, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, the Netherlands; Leiden Institute for Brain and Cognition, Leiden University Medical Center, P.O. Box 9600, 2300 RC, Leiden, the Netherlands. Electronic address:

Objectives: To compare the quality of life (QoL) of children with hearing loss (HL) and children with normal hearing (NH) and to examine how the QoL of children with HL changes over time, considering language skills, type of hearing device, degree of HL, and type of education.

Methods And Materials: This longitudinal study included 62 children with HL and their parents. Developmental outcome data were collected at two time points, when the mean ages of the children were 4 and 11 years. The Pediatric Quality of Life (PedsQL™) questionnaire, which includes assessments of Physical, Emotional, Social, and School functioning, was completed by parents at both time points and by the children with HL at the second time point. Receptive and expressive language skills at 4 years were assessed by the Reynell Developmental Language Scale. Results were compared with a Dutch normative sample.

Results: The QoL of children with HL was similar to that of children with NH at both time points on two of the four QoL scales, Emotional and Physical functioning. On the other two scales, Social and School functioning, children with HL who attended special education and children who switched to mainstream education showed lower scores than children with HL who were consistently in mainstream education and lower scores than children with NH. The School QoL of children with HL decreased over time, as did the School QoL of children with NH. Social QoL of children with cochlear implants decreased over time, but this was not the case in children with hearing aids. Language skills and the degree of HL did not clinically improve the QoL over time of preschool children with HL.

Conclusions: The QoL of children with HL in mainstream education and the Physical and Emotional QoL of all children with HL were satisfactory. It is essential to develop specific guidance regarding school activities for children with HL in special education and for children with HL who switch to mainstream education in order to increase their social QoL.
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http://dx.doi.org/10.1016/j.ijporl.2019.109701DOI Listing
January 2020

Concise tool based on language milestones identifies children with specific language impairment at 24-45 months of age.

Acta Paediatr 2018 12 17;107(12):2125-2130. Epub 2018 Oct 17.

Netherlands Organization for Applied Scientific Research TNO, Leiden, The Netherlands.

Aim: This study aimed to develop a concise tool with acceptable predictive properties to identify young children with specific language impairment (SLI).

Methods: In this nested case-control study children with SLI attending two special needs schools for severe speech and language difficulties in the Netherlands were matched by date of birth and sex with control children attending mainstream education. This study analysed the predictive validity for having SLI at a mean age of eight years and three months (range 4-11 years) using combinations of six language milestones that were registered at 24, 36 and 45 months and retrieved from the children's healthcare files in 2012.

Results: We included 253 pairs of children with and without SLI. During a single visit, combinations of two milestones at one age achieved a specificity of at least 97% and sensitivities ranged from 32% to 64%. However, the concise tool, which combined five milestones at three different ages - 24, 36 and 45 months - had a specificity of 96% (95% confidence interval 94-99%) and a sensitivity of 71% (95% confidence interval 66-77%).

Conclusion: Combining milestones at different ages provided a concise tool that could help to detect children with SLI at a young age.
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http://dx.doi.org/10.1111/apa.14596DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6282738PMC
December 2018

Children with specific language impairment are more likely to reach motor milestones late.

Child Care Health Dev 2018 11 29;44(6):857-862. Epub 2018 Aug 29.

Netherlands Organization for Applied Scientific Research, TNO, Leiden, The Netherlands.

Background: Delayed language development without an obvious cause is considered an isolated developmental disorder and is called specific language impairment (SLI). SLI is probably the most prevalent developmental disorder in childhood with a generally cited prevalence of 7%. This study aimed to investigate whether SLI is always an isolated disorder or if children with SLI also have delayed motor development.

Methods: We used data of an earlier study with a prospective nested case-control design in which developmental data were collected from child health care files. Cases were children (4-11 years) with diagnosed SLI. They were matched by sex and date of birth with control children attending mainstream education. Data of both groups on seven gross and six fine motor milestones which had been registered in the Dutch Developmental Instrument between the ages of 15-36 months were retrieved from child health care files. McNemar tests were performed to test for differences in reaching motor milestones at the age norm between the case and control group.

Results: Data from 253 children in each group were available. A significant difference was found between both groups in the proportion failing to reach three of the seven investigated gross motor milestones at the age norm (p < 0.05). The proportion of children not reaching the motor milestone at the age norm was significantly higher for five of the six fine motor milestones in children with SLI compared with control children (p < 0.05).

Conclusions: More children with SLI are late in reaching motor milestones than children without SLI. This means that it is debatable whether SLI can be regarded as a "specific" impairment, which is not associated with other developmental problems. A broader developmental assessment is therefore indicated when diagnosing SLI.
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http://dx.doi.org/10.1111/cch.12614DOI Listing
November 2018

Healthcare costs attributable to congenital cytomegalovirus infection.

Arch Dis Child 2018 05 23;103(5):452-457. Epub 2018 Jan 23.

Department of Medical Microbiology, Leiden University Medical Center (LUMC), Leiden, The Netherlands.

Objective: Congenital cytomegalovirus infection (cCMV) can cause symptoms at birth as well as long-term impairment. This study estimates cCMV-related healthcare costs in the Netherlands in early childhood.

Design, Setting And Patients: In a nationwide retrospective cohort study, 156 children with cCMV were identified by testing 31 484 neonatal dried blood spots for cCMV. Use of healthcare resources in the first 6 years of life by children with cCMV and a matched cCMV-negative control group were analysed. Mean costs per child were calculated by multiplying healthcare resource use by its reference prices.

Exposure: Children with cCMV were compared with cCMV-negative children.

Main Outcome Measures: The average total healthcare costs per child were based on the average costs for hospital admissions and consultations by healthcare providers.

Results: Mean healthcare costs of children with cCMV (€6113, n=133) were higher than children without cCMV (€3570, n=274), although statistically not significant, with a mean difference of €2544 (95% CI €-451 to €5538). The costs of children with long-term impairment were two times higher in children with cCMV (€17 205) compared with children without cCMV (€8332).

Conclusions: Children with cCMV, especially those with long-term impairment and those symptomatic at birth, accrue higher healthcare costs than cCMV-negative children in the first 6 years of life, although this is not statistically significant. This economic impact is of importance in the evaluation of preventive measures against cCMV.

Trial Registration Number: NTR3582.
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http://dx.doi.org/10.1136/archdischild-2017-312805DOI Listing
May 2018

Accuracy of a Screening Tool for Early Identification of Language Impairment.

J Speech Lang Hear Res 2018 01;61(1):104-113

Willem-Alexander Children's Hospital, Leiden University Medical Center, the Netherlands.

Purpose: A screening tool called the VTO Language Screening Instrument (VTO-LSI) was developed to enable more uniform and earlier detection of language impairment. This report, consisting of 2 retrospective studies, focuses on the effects of using the VTO-LSI compared to regular detection procedures.

Method: Study 1 retrospectively compared VTO-LSI with regular detection procedures. Outcome measure was the detection rate of language impairment among 24-month-old children. Data were retrieved from medical records of children attending a youth health care center. Study 2 retrospectively compared the effects of VTO-LSI and regular detection procedures on the age at referral for diagnostic investigations and the influence of sex. Data were retrieved from medical records from the speech and hearing center and analyzed with multivariate analysis of variance.

Results: With the VTO-LSI, significantly more cases with language impairment were identified compared with the regular detection procedure (2.4% vs. 0.4%). In regions where the VTO-LSI was used, girls were almost 2 years younger, and boys were 1 year younger when referred to diagnostic investigations than in regions with regular detection procedures.

Conclusion: The VTO-LSI was more effective than regular detection procedures.
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http://dx.doi.org/10.1044/2017_JSLHR-L-16-0173DOI Listing
January 2018

Long-term impairment attributable to congenital cytomegalovirus infection: a retrospective cohort study.

Dev Med Child Neurol 2017 12 9;59(12):1261-1268. Epub 2017 Oct 9.

Department of Medical Microbiology, Leiden University Medical Center, Leiden, the Netherlands.

Aim: This study aimed to estimate long-term impairment attributable to congenital cytomegalovirus infection (cCMV).

Method: This nationwide cohort study retrospectively assessed cCMV in children born in 2008 in the Netherlands, testing 31 484 stored neonatal dried blood spots. Extensive medical data of cCMV-positive children (n=133) and matched cCMV-negative comparison children (n=274) up to 6 years of age were analysed.

Results: Moderate to severe long-term impairment was diagnosed in 24.8% (33 out of 133) of all cCMV-positive children (53.8% in symptomatic, 17.8% in asymptomatic), compared with 12.0% (33 out of 274) of cCMV-negative children. Sensorineural hearing loss was seen only in five cCMV-positive children (3.8%). Developmental delays were diagnosed more often in cCMV-positive children than cCMV-negative children: motor (12.0% vs 1.5%), cognitive (6.0% vs 1.1%), and speech-language (16.5% vs 7.3%). Long-term impairment in multiple domains was more frequent in symptomatic (19.2%) and asymptomatic (8.4%) cCMV-positive children than cCMV-negative children (1.8%).

Interpretation: Children with cCMV were twice as likely to have long-term impairment up to the age of 6 years, especially developmental delays and sensorineural hearing loss, than cCMV-negative comparison children, with a risk difference of 12.8%. These insights into the risk of cCMV-associated impairment can help optimize care and stimulate preventive measures.

What This Paper Adds: Congenital cytomegalovirus infection (cCMV) leads to impairment in 25% of cases. Fifty per cent of children with cCMV symptoms at birth have long-term impairment. The risk difference of moderate to severe long-term impairment between children with and without cCMV is 13%, attributable to cCMV. cCMV leads to motor, cognitive, and speech-language developmental delay in children.
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http://dx.doi.org/10.1111/dmcn.13556DOI Listing
December 2017

Congenital Cytomegalovirus Infection: Child Development, Quality of Life and Impact on Daily Life.

Pediatr Infect Dis J 2017 Dec;36(12):1141-1147

From the *Centre for Infectious Diseases, Epidemiology and Surveillance, National Institute for Public Health and the Environment, Bilthoven, the Netherlands, †Department of Medical Microbiology, Leiden University Medical Center, Leiden, the Netherlands, and ‡Willem-Alexander Children's Hospital, Leiden University Medical Center, Leiden, the Netherlands.

Congenital cytomegalovirus (cCMV) infection is the most common congenital infection worldwide and can lead to long-term impairments such as developmental delay. It is currently unknown how this affects the daily life of children and their parents. Children For this study, children with cCMV were identified by testing stored dried blood spots of 31,484 five-year-old children born in 2008 in the Netherlands. Parents of 133 children with cCMV and 274 children without cCMV participated and filled in questionnaires on the child's development, the child's and parents' quality of life, care provided for the children and consequences of cCMV on daily life. School performance reports at 6 years of age were also investigated. Children with cCMV had delays in general and expressive language development more often, and they attended physical therapists more frequently than children without cCMV. School performance of children with cCMV and symptoms at birth was poorer than that of cCMV-negative children with similar symptoms at birth. The quality of life of children with long-term impairment was lower in children with cCMV than those without cCMV. Parents of children with cCMV and long-term impairments reported more physical and concentration problems than parents of children without cCMV. These findings indicate that cCMV has a considerable impact not only on the child's development and school performance but also on the daily life of children and their parents. The care for children with cCMV should therefore include support for motor and speech-language development as well as family-centered care.
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http://dx.doi.org/10.1097/INF.0000000000001663DOI Listing
December 2017

Can You Hear What I Think? Theory of Mind in Young Children With Moderate Hearing Loss.

Ear Hear 2017 Sep/Oct;38(5):588-597

1Department of Otorhinolaryngology and Head & Neck Surgery, Leiden University Medical Center, Leiden, The Netherlands; 2Department of Developmental Psychology, Leiden University, Leiden, The Netherlands; 3Dutch Foundation for the Deaf and Hard of Hearing Child, Amsterdam, The Netherlands; 4Willem-Alexander Children's Hospital, Department of Social Pediatrics, Leiden University Medical Center, Leiden, The Netherlands; 5Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands; and 6Leiden Institute for Brain and Cognition, Leiden University Medical Center, Leiden, The Netherlands.

Objectives: The first aim of this study was to examine various aspects of Theory of Mind (ToM) development in young children with moderate hearing loss (MHL) compared with hearing peers. The second aim was to examine the relation between language abilities and ToM in both groups. The third aim was to compare the sequence of ToM development between children with MHL and hearing peers.

Design: Forty-four children between 3 and 5 years old with MHL (35 to 70 dB HL) who preferred to use spoken language were identified from a nationwide study on hearing loss in young children. These children were compared with 101 hearing peers. Children were observed during several tasks to measure intention understanding, the acknowledgement of the other's desires, and belief understanding. Parents completed two scales of the child development inventory to assess expressive language and language comprehension in all participants. Objective language test scores were available from the medical files of children with MHL.

Results: Children with MHL showed comparable levels of intention understanding but lower levels of both desire and belief understanding than hearing peers. Parents reported lower language abilities in children with MHL compared with hearing peers. Yet, the language levels of children with MHL were within the average range compared with test normative samples. A stronger relation between language and ToM was found in the hearing children than in children with MHL. The expected developmental sequence of ToM skills was divergent in approximately one-fourth of children with MHL, when compared with hearing children.

Conclusion: Children with MHL have more difficulty in their ToM reasoning than hearing peers, despite the fact that their language abilities lie within the average range compared with test normative samples.
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http://dx.doi.org/10.1097/AUD.0000000000000427DOI Listing
May 2018

Early detection of hearing impairment reflected in better reading ability in teenage years.

Evid Based Med 2016 08 11;21(4):155. Epub 2016 Jul 11.

Department of Neurology, St. Antonius Hospital, Nieuwegein, The Netherlands.

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http://dx.doi.org/10.1136/ebmed-2016-110466DOI Listing
August 2016

Early detection of hearing impairment reflected in better reading ability in teenage years.

Evid Based Med 2016 08 11;21(4):155. Epub 2016 Jul 11.

Department of Neurology, St. Antonius Hospital, Nieuwegein, The Netherlands.

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http://dx.doi.org/10.1136/ebmed-2016-110466DOI Listing
August 2016

Failure to meet language milestones at two years of age is predictive of specific language impairment.

Acta Paediatr 2016 Mar 21;105(3):304-10. Epub 2015 Dec 21.

Netherlands Organization for Applied Scientific Research TNO, Leiden, The Netherlands.

Aim: This study established predictive properties of single language milestones for specific language impairment (SLI) after the age of four, as these had not previously been reported in the literature.

Methods: In this nested case-control study, children attending special needs schools for severe speech and language difficulties were matched with children attending mainstream schools. Data covering the ages of zero to four years were retrieved from well-child care clinics and the outcomes of 23 language milestones in the Dutch Developmental Instrument were analysed. The predictive properties were expressed as positive likelihood ratios, sensitivity and specificity.

Results: We included 253 pairs of children with and without SLI, aged from four to 11 years. The mean age was eight years and three months, and 77% were boys. From the age of 18 months, cases and controls differed significantly on all milestones (p < 0.01). After 24 months, the language milestones had positive likelihood ratios that ranging from 6 to 108. In general, language milestones had a high specificity (range 77-100%), but the sensitivity was relatively low (range 0-68%).

Conclusion: Failure to meet language milestones from the age of 24 months was predictive of SLI, but the use of separate milestones had limited value due to low sensitivity.
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http://dx.doi.org/10.1111/apa.13271DOI Listing
March 2016

Early identification: Language skills and social functioning in deaf and hard of hearing preschool children.

Int J Pediatr Otorhinolaryngol 2015 Dec 19;79(12):2221-6. Epub 2015 Oct 19.

Department of Otorhinolaryngology and Head & Neck Surgery, Leiden University Medical Center, P.O. Box 9600, Leiden 2300 RC, The Netherlands; Leiden Institute for Brain and Cognition, Leiden University Medical Center, P.O. Box 9600, Leiden 2300 RC, The Netherlands. Electronic address:

Objective: Permanent childhood hearing impairment often results in speech and language problems that are already apparent in early childhood. Past studies show a clear link between language skills and the child's social-emotional functioning. The aim of this study was to examine the level of language and communication skills after the introduction of early identification services and their relation with social functioning and behavioral problems in deaf and hard of hearing children.

Study Design: Nationwide cross-sectional observation of a cohort of 85 early identified deaf and hard of hearing preschool children (aged 30-66 months).

Methods: Parents reported on their child's communicative abilities (MacArthur-Bates Communicative Development Inventory III), social functioning and appearance of behavioral problems (Strengths and Difficulties Questionnaire). Receptive and expressive language skills were measured using the Reynell Developmental Language Scale and the Schlichting Expressive Language Test, derived from the child's medical records.

Results: Language and communicative abilities of early identified deaf and hard of hearing children are not on a par with hearing peers. Compared to normative scores from hearing children, parents of deaf and hard of hearing children reported lower social functioning and more behavioral problems. Higher communicative abilities were related to better social functioning and less behavioral problems. No relation was found between the degree of hearing loss, age at amplification, uni- or bilateral amplification, mode of communication and social functioning and behavioral problems.

Conclusion: These results suggest that improving the communicative abilities of deaf and hard of hearing children could improve their social-emotional functioning.
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http://dx.doi.org/10.1016/j.ijporl.2015.10.008DOI Listing
December 2015

Violence against women: do not forget their children!

Lancet 2015 Apr;385(9977):1505

Women's and Family Health, Leiden University Medical Centre, Leiden, The Netherlands.

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http://dx.doi.org/10.1016/S0140-6736(15)60744-9DOI Listing
April 2015

Millennium Development Goals in Europe.

Arch Dis Child 2015 Feb;100 Suppl 1:S72-3

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http://dx.doi.org/10.1136/archdischild-2013-305871DOI Listing
February 2015

Millennium Development Goals in Europe.

Arch Dis Child 2015 Feb;100 Suppl 1:S72-3

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http://dx.doi.org/10.1136/archdischild-2013-305871DOI Listing
February 2015

[Young people with Down syndrome: independence and social functioning].

Ned Tijdschr Geneeskd 2014 ;158:A7983

Willem-Alexander Kinderziekenhuis, Leids Universitair Medisch Centrum, Leiden.

Objective: To determine the level of independence and social functioning in young people with Down syndrome.

Design: Cross-sectional study.

Method: Via the Dutch Down Syndrome Foundation (Stichting Downsyndroom), we asked parents of children with Down syndrome born in 1992, 1993 or 1994 to complete a written questionnaire about their child. This questionnaire contained the following standardised lists: the 'Dutch social competence rating scale for people with a learning disability', the 'Child behaviour checklist' and the 'Children's social behaviour questionnaire', and additional questions on background characteristics. The results of this Dutch cohort were compared with available data on peers without Down syndrome.

Results: Data from 322 young people with Down syndrome, mean age 18.4 years (range 16.8-19.9 years), were collected (response 63%). Almost 60% of participants mastered basic skills of independent functioning, such as maintaining adequate standards of personal hygiene, preparing breakfast and being able to spend at least 30 minutes at home alone. About 10% of the participants had basic skills such as cooking and paying in a shop. Nine out of ten participants had more problems with social functioning than peers without Down syndrome, mainly with social interaction, processing information and regulating their emotions. Half of the participants had clinically relevant behavioural problems.

Conclusion: The results of this study show that young people with Down syndrome have limited practical and social skills, and more behavioural problems than their peers without Down syndrome. In daily life they are to a greater or lesser extent dependent on others, and need lifelong support.
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June 2015

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

Child Abuse Negl 2014 Nov 2;38(11):1822-31. Epub 2014 Sep 2.

Social Pediatrics, Willem-Alexander Children's Hospital, Leiden University Medical Center, Albinusdreef 2, 2333 ZA Leiden, The Netherlands.

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.
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http://dx.doi.org/10.1016/j.chiabu.2014.07.016DOI Listing
November 2014

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

Child Abuse Negl 2014 Nov 2;38(11):1822-31. Epub 2014 Sep 2.

Social Pediatrics, Willem-Alexander Children's Hospital, Leiden University Medical Center, Albinusdreef 2, 2333 ZA Leiden, The Netherlands.

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.
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http://dx.doi.org/10.1016/j.chiabu.2014.07.016DOI Listing
November 2014

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

Child Abuse Negl 2014 Nov 2;38(11):1822-31. Epub 2014 Sep 2.

Social Pediatrics, Willem-Alexander Children's Hospital, Leiden University Medical Center, Albinusdreef 2, 2333 ZA Leiden, The Netherlands.

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.
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http://dx.doi.org/10.1016/j.chiabu.2014.07.016DOI Listing
November 2014

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

Res Dev Disabil 2013 Dec 21;34(12):4599-607. Epub 2013 Oct 21.

Department of Child Health, Netherlands Organization for Applied Scientific Research (TNO), Post Office Box 2215, 2301 CE Leiden, The Netherlands. Electronic address:

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 Children's 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.
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http://dx.doi.org/10.1016/j.ridd.2013.09.041DOI Listing
December 2013

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

J Pediatr 2013 Nov 2;163(5):1396-401. Epub 2013 Aug 2.

Department of Child Health, Netherlands Organization for Applied Scientific Research, Leiden, The Netherlands. Electronic address:

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.
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http://dx.doi.org/10.1016/j.jpeds.2013.06.054DOI Listing
November 2013

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

J Pediatr 2013 Nov 2;163(5):1396-401. Epub 2013 Aug 2.

Department of Child Health, Netherlands Organization for Applied Scientific Research, Leiden, The Netherlands. Electronic address:

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.
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http://dx.doi.org/10.1016/j.jpeds.2013.06.054DOI Listing
November 2013

Prevalence of overweight in Dutch children with Down syndrome.

Pediatrics 2012 Dec 12;130(6):e1520-6. Epub 2012 Nov 12.

Departments of Child Health, Netherlands Organization for Applied Scientific Research, TNO, Leiden, Netherlands.

Objective: Prevalence of overweight in children is increasing, causing various health problems. This study aims to establish growth references for weight and to assess the prevalence rates of overweight and obesity in a nationwide sample of Dutch children with Down syndrome (DS), taking into account the influence of comorbidity.

Methods: In 2009, longitudinal growth data from Dutch children with trisomy 21 who were born after 1982 were retrospectively collected from medical records of 25 Dutch regional specialized DS centers. "Healthy" was defined as not having concomitant disorders or having only a mild congenital heart defect. Weight and BMI references were calculated by using the LMS method, and prevalence rates of overweight and obesity by using cutoff values for BMI as defined by the International Obesity Task Force. Differences in prevalence rates were tested by multilevel logistic regression analyses to adjust for gender and age.

Results: Growth data of 1596 children with DS were analyzed. Compared with the general Dutch population, healthy children with DS were more often overweight (25.5% vs 13.3% in boys, and 32.0% vs 14.9% in girls) and obese (4.2% vs 1.8%, and 5.1% vs 2.2%, respectively). Prevalence rates of overweight between DS children with or without concomitant disorders did not vary significantly.

Conclusions: Dutch children with DS have alarmingly high prevalence rates of overweight and obesity during childhood and adolescence. Health care professionals should be aware of the risk of overweight and obesity in children with DS to prevent complications.
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http://dx.doi.org/10.1542/peds.2012-0886DOI Listing
December 2012

Tumours: Less lactation may explain cancer rise.

Nature 2012 Jun 27;486(7404):473. Epub 2012 Jun 27.

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http://dx.doi.org/10.1038/486473cDOI Listing
June 2012

Healthy growth in children with Down syndrome.

PLoS One 2012 17;7(2):e31079. Epub 2012 Feb 17.

Department of Child Health, Netherlands Organization for Applied Scientific Research (TNO), Leiden, The Netherlands.

Objective: To provide cross-sectional height and head circumference (HC) references for healthy Dutch children with Down syndrome (DS), while considering the influence of concomitant disorders on their growth, and to compare growth between children with DS and children from the general population.

Study Design: Longitudinal growth and medical data were retrospectively collected from medical records in 25 of the 30 regional hospital-based outpatient clinics for children with DS in The Netherlands. Children with Trisomy 21 karyotype of Dutch descent born after 1982 were included. The LMS method was applied to fit growth references.

Results: We enrolled 1,596 children, and collected 10,558 measurements for height and 1,778 for HC. Children with DS without concomitant disorders (otherwise healthy children) and those suffering only from mild congenital heart defects showed similar growth patterns. The established growth charts, based on all measurements of these two groups, demonstrate the three age periods when height differences between children with and without DS increase: during pregnancy, during the first three years of life, and during puberty. This growth pattern results in a mean final height of 163.4 cm in boys and 151.8 cm in girls (-2.9 standard deviation (SD) and -3.0 SD on general Dutch charts, respectively). Mean HC (0 to 15 months) was 2 SD less than in the general Dutch population. The charts are available at www.tno.nl/growth.

Conclusions: Height and HC references showed that growth retardation in otherwise healthy children with DS meanly occurs in three critical periods of growth, resulting in shorter final stature and smaller HC than the general Dutch population shows. With these references, health care professionals can optimize their preventive care: monitoring growth of individual children with DS optimal, so that growth retarding comorbidities can be identified early, and focusing on the critical age periods to establish ways to optimize growth.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0031079PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3281925PMC
June 2012

ESPGHAN's 2008 recommendation for early introduction of complementary foods: how good is the evidence?

Matern Child Nutr 2011 Oct;7(4):335-43

Health Services Research, Epidemiology and International Health, Institute for Maternal and Child Health IRCCS Burlo Garofolo, Trieste, Italy.

Since 2002, the World Health Organization and many governments and professional associations have recommended exclusive breastfeeding for 6 months followed by complementary feeding (giving solid foods alongside breast milk) as optimal infant feeding practice. Several articles have been published challenging this recommendation. Arguably, the most influential has been the 2008 commentary of the European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) Committee on Nutrition, which recommended that complementary foods should be introduced to all infants between 17 and 26 weeks. We challenge the validity of ESPGHAN's position, questioning the adequacy of the literature search, the interpretation and evidence used to reach their conclusions and the balance of an approach that focuses on disease prevention, with scant consideration of growth and neuromotor development. We contend that ESPGHAN's position should be understood as an expert opinion that may be influenced by conflicts of interest. In our view, the ESPGHAN position paper is not evidence based and does not justify a change of the current public health recommendation for 6 months of exclusive breastfeeding. At an individual level, health professionals should understand that developmental readiness for starting solid foods has an age range like other developmental milestones; that fewer infants will probably be ready to start complementary feeding before, rather than after, 6 months; and that their role is to equip parents with the confidence and skills to recognise the signs of developmental readiness. This empowerment process for infants and parents should be preferred over the prescriptive ESPGHAN approach.
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http://dx.doi.org/10.1111/j.1740-8709.2011.00363.xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6860628PMC
October 2011

Congenital cytomegalovirus infection: prevention is better than treatment.

J Pediatr 2011 Nov 31;159(5):877; author's reply 877-8. Epub 2011 Aug 31.

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http://dx.doi.org/10.1016/j.jpeds.2011.07.044DOI Listing
November 2011

Clinical practice: The approach to the deaf or hard-of-hearing paediatric patient.

Eur J Pediatr 2011 Nov 16;170(11):1359-63. Epub 2011 Jul 16.

Department of Paediatrics, Spaarne Hospital, Hoofddorp, the Netherlands.

Approximately 1 child in 1,000 is deaf or severely hard of hearing from birth, and the prevalence rises to about 1.6 per 1,000 in adolescents. Providing medical care for this group of children poses special challenges for professionals. To allow a medical consultation to proceed successfully and to the satisfaction of the patient, it is essential that physicians are aware of the different linguistic and cultural background of these patients. Healthcare workers should be aware of the possible higher incidence of comorbidities, sexual abuse and (psycho)social problems, of the possible pitfalls in obtaining informed consent and higher frequency of medical mistakes. This review describes the communication challenges and medical, ethical and legal issues a physician can experience when faced with these patients.
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http://dx.doi.org/10.1007/s00431-011-1530-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3197921PMC
November 2011

Causes of permanent childhood hearing impairment.

Laryngoscope 2011 Feb;121(2):409-16

Willem-Alexander Children and Youth Center, Subdepartment of Social Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.

Introduction: The causes of Permanent Childhood Hearing Impairment (PCHI) are often quoted as being hereditary in 50%, acquired in 25%, and unknown in 25% of cases. Interest in the causes of PCHI has grown recently due to increasing diagnostic possibilities. We investigated the evidence for the reported distribution of these causes.

Methods: Population-based study and a systematic review. Inclusion criteria for population-based study: children born between 2003 and 2005, resident in The Netherlands at birth, known at an Audiology Center with PCHI at the age of 3-5 years. The causes of PCHI were determined prospectively by detection of congenital cytomegalovirus on dried blood spots and/or genetic diagnostic investigations in addition to reviewing data from medical records. A systematic review was carried out using three terms (hearing loss, infant, and etiology) and limited to articles published between January 1997 and July 2009. Main outcome measures were: the (weighted) proportions of the various causes of PCHI following diagnostic investigations.

Results: In the study-population (n = 185) a hereditary cause was found in 38.9%, acquired cause in 29.7%, miscellaneous cause in 7.1%, and the cause remained unknown in 24.3%. The systematic review of the literature (n = 9 articles) resulted in a weighted mean of 30.4% hereditary, 19.2% acquired, and 48.3% unknown causes of PCHI.

Discussion: The systematic review and the results of the population-based study provided little support for the generally accepted distribution of causes of PCHI.
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http://dx.doi.org/10.1002/lary.21377DOI Listing
February 2011