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2. Participation of children in three Bavarian inclusive primary schools: parent and teacher perspectives.

Author

Friedmann, Anna, Altschuck, Natalie, Bertmann, Isabella, Karsch, Fabian, Petters, Anke, De Bock, Freia, Philippi, Heike, Mall, Volker, and Wacker, Elisabeth

Subjects
PRIMARY school teachers, TEACHER evaluation, PARENT attitudes, INCLUSION (Disability rights), INCLUSIVE education
Abstract

Participation is one key element of inclusive education. While the inclusion rate in German schools is rising, little is known with regard to children's participation in this context. This study examines the participation of children with and without impairments at three inclusive primary schools in Bavaria. Cross-sectional data was collected in parents and teachers of 124 3rd grade pupils (girls: n = 62, age: M = 9.5 years; boys: n = 62, age: M = 9.6). 27% of the parents stated their children had impairments (4.9% physical, 13.1% mental/ intellectual and 9.0% other/multiple). Participation in school and other life areas ('neighborhood & community', 'home' and 'living activities') was assessed by the 'Child and Adolescent Scale of Participation (CASP)'. Parents and teachers of children with impairments reported significantly lower scores in all CASP subsections and total score. In school, according to teacher rating, all pupils showed the lowest participation scores in educational activities with other children in the classroom and in communicating with children/adults. The results highlight the continuing challenges to reach meaningful participation of all children as a condition for effective inclusive education. This seems to be true not only for school but also for other social contexts. [ABSTRACT FROM AUTHOR]

Published
2024
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3. Quality of life and correlating factors in children, adolescents with epilepsy, and their caregivers: A cross-sectional multicenter study from Germany

Author

Riechmann, Janna, Willems, Laurent M., Boor, Rainer, Kieslich, Matthias, Knake, Susanne, Langner, Cornelia, Neubauer, Bernd A., Oberman, Bettina, Philippi, Heike, Reese, Jens P., Rochel, Michael, Schubert-Bast, Susanne, Seeger, Jürgen, Seipelt, Peter, Stephani, Ulrich, Rosenow, Felix, Hamer, Hajo M., and Strzelczyk, Adam

Published
2019
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4. Clinical spectrum of POLR3-related leukodystrophy caused by biallelic POLR1C pathogenic variants

Author

Gauquelin, Laurence, Cayami, Ferdy K., Sztriha, László, Yoon, Grace, Tran, Luan T., Guerrero, Kether, Hocke, François, van Spaendonk, Rosalina M.L., Fung, Eva L., DʼArrigo, Stefano, Vasco, Gessica, Thiffault, Isabelle, Niyazov, Dmitriy M., Person, Richard, Lewis, Kara Stuart, Wassmer, Evangeline, Prescott, Trine, Fallon, Penny, McEntagart, Meriel, Rankin, Julia, Webster, Richard, Philippi, Heike, van de Warrenburg, Bart, Timmann, Dagmar, Dixit, Abhijit, Searle, Claire, Thakur, Nivedita, Kruer, Michael C., Sharma, Suvasini, Vanderver, Adeline, Tonduti, Davide, van der Knaap, Marjo S., Bertini, Enrico, Goizet, Cyril, Fribourg, Sébastien, Wolf, Nicole I., and Bernard, Geneviève

Published
2019
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6. LIS1-associated classic lissencephaly: A retrospective, multicenter survey of the epileptogenic phenotype and response to antiepileptic drugs

Author

Herbst, Saskia M., Proepper, Christiane R., Geis, Tobias, Borggraefe, Ingo, Hahn, Andreas, Debus, Otfried, Haeussler, Martin, von Gersdorff, Gero, Kurlemann, Gerhard, Ensslen, Matthias, Beaud, Nathalie, Budde, Joerg, Gilbert, Michael, Heiming, Ralf, Morgner, Rita, Philippi, Heike, Ross, Sophia, Strobl-Wildemann, Gertrud, Muelleder, Kerstin, Vosschulte, Paul, Morris-Rosendahl, Deborah J., Schuierer, Gerhard, and Hehr, Ute

Published
2016
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8. Evaluation of a Complex Intervention to Strengthen Participation-Centred Care for Children with Special Healthcare Needs: Protocol of the Stepped Wedge Cluster Randomised PART-CHILD Trial

Author

Eichinger, Michael, primary, Görig, Tatiana, additional, Georg, Sabine, additional, Hoffmann, Dorle, additional, Sonntag, Diana, additional, Philippi, Heike, additional, König, Jochem, additional, Urschitz, Michael S., additional, and De Bock, Freia, additional

Published
2022
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17. Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C

Author

Pelletier, Félixe, Perrier, Stefanie, Cayami, Ferdy K., Mirchi, Amytice, Saikali, Stephan, Tran, Luan T., Ulrick, Nicole, Guerrero, Kether, Rampakakis, Emmanouil, Van Spaendonk, Rosalina M.L., Naidu, Sakkubai, Pohl, Daniela, Gibson, William T., Demos, Michelle, Goizet, Cyril, Tejera-Martin, Ingrid, Potic, Ana, Fogel, Brent L., Brais, Bernard, Sylvain, Michel, Sébire, Guillaume, Lourenço, Charles Marques, Bonkowsky, Joshua L., Catsman-Berrevoets, Coriene, Pinto, Pedro S., Tirupathi, Sandya, Strømme, Petter, De Grauw, Ton, Gieruszczak-Bialek, Dorota, Krägeloh-Mann, Ingeborg, Mierzewska, Hanna, Philippi, Heike, Rankin, Julia, Atik, Tahir, Banwell, Brenda, Benko, William S., Blaschek, Astrid, Bley, Annette, Boltshauser, Eugen, Bratkovic, Drago, Brozova, Klara, Cimas, Icíar, Clough, Christopher, Corenblum, Bernard, Dinopoulos, Argirios, Dolan, Gail, Faletra, Flavio, Fernandez, Raymond, Fletcher, Janice, Garcia Garcia, Maria Eugenia, Gasparini, Paolo, Gburek-Augustat, Janina, Gonzalez Moron, Dolores, Hamati, Aline, Harting, Inga, Hertzberg, Christoph, Hill, Alan, Hobson, Grace M., Innes, A. Micheil, Kauffman, Marcelo, Kirwin, Susan M., Kluger, Gerhard, Kolditz, Petra, Kotzaeridou, Urania, La Piana, Roberta, Liston, Eriskay, McClintock, William, McEntagart, Meriel, McKenzie, Fiona, Melançon, Serge, Misbahuddin, Anjum, Suri, Mohnish, Monton, Fernando I., Moutton, Sebastien, Murphy, Raymond P.J., Nickel, Miriam, Onay, Hüseyin, Orcesi, Simona, Özklnay, Ferda, Patzer, Steffi, Pedro, Helio, Pekic, Sandra, Pineda Marfa, Mercedes, Pizzino, Amy, Plecko, Barbara, Poll-The, Bwee Tien, Popovic, Vera, Rating, Dietz, Rioux, Marie France, Rodriguez Espinosa, Norberto, Ronan, Anne, Ostergaard, John R., Rossignol, Elsa, Sanchez-Carpintero, Rocio, Schossig, Anna, Senbil, Nesrin, Sønderberg Roos, Laura K., Stevens, Cathy A., Synofzik, Matthis, Sztriha, László, Tibussek, Daniel, Timmann, Dagmar, Tonduti, Davide, Van De Warrenburg, Bart P., Vázquez-López, Maria, Venkateswaran, Sunita, Wasling, Pontus, Wassmer, Evangeline, Webster, Richard I., Wiegand, Gert, Yoon, Grace, Rotteveel, Joost, Schiffmann, Raphael, Van Der Knaap, Marjo S., Vanderver, Adeline, Martos-Moreno, Gabriel, Polychronakos, Constantin, Wolf, Nicole I., Bernard, Geneviève, Pelletier, Félixe, Perrier, Stefanie, Cayami, Ferdy K., Mirchi, Amytice, Saikali, Stephan, Tran, Luan T., Ulrick, Nicole, Guerrero, Kether, Rampakakis, Emmanouil, Van Spaendonk, Rosalina M.L., Naidu, Sakkubai, Pohl, Daniela, Gibson, William T., Demos, Michelle, Goizet, Cyril, Tejera-Martin, Ingrid, Potic, Ana, Fogel, Brent L., Brais, Bernard, Sylvain, Michel, Sébire, Guillaume, Lourenço, Charles Marques, Bonkowsky, Joshua L., Catsman-Berrevoets, Coriene, Pinto, Pedro S., Tirupathi, Sandya, Strømme, Petter, De Grauw, Ton, Gieruszczak-Bialek, Dorota, Krägeloh-Mann, Ingeborg, Mierzewska, Hanna, Philippi, Heike, Rankin, Julia, Atik, Tahir, Banwell, Brenda, Benko, William S., Blaschek, Astrid, Bley, Annette, Boltshauser, Eugen, Bratkovic, Drago, Brozova, Klara, Cimas, Icíar, Clough, Christopher, Corenblum, Bernard, Dinopoulos, Argirios, Dolan, Gail, Faletra, Flavio, Fernandez, Raymond, Fletcher, Janice, Garcia Garcia, Maria Eugenia, Gasparini, Paolo, Gburek-Augustat, Janina, Gonzalez Moron, Dolores, Hamati, Aline, Harting, Inga, Hertzberg, Christoph, Hill, Alan, Hobson, Grace M., Innes, A. Micheil, Kauffman, Marcelo, Kirwin, Susan M., Kluger, Gerhard, Kolditz, Petra, Kotzaeridou, Urania, La Piana, Roberta, Liston, Eriskay, McClintock, William, McEntagart, Meriel, McKenzie, Fiona, Melançon, Serge, Misbahuddin, Anjum, Suri, Mohnish, Monton, Fernando I., Moutton, Sebastien, Murphy, Raymond P.J., Nickel, Miriam, Onay, Hüseyin, Orcesi, Simona, Özklnay, Ferda, Patzer, Steffi, Pedro, Helio, Pekic, Sandra, Pineda Marfa, Mercedes, Pizzino, Amy, Plecko, Barbara, Poll-The, Bwee Tien, Popovic, Vera, Rating, Dietz, Rioux, Marie France, Rodriguez Espinosa, Norberto, Ronan, Anne, Ostergaard, John R., Rossignol, Elsa, Sanchez-Carpintero, Rocio, Schossig, Anna, Senbil, Nesrin, Sønderberg Roos, Laura K., Stevens, Cathy A., Synofzik, Matthis, Sztriha, László, Tibussek, Daniel, Timmann, Dagmar, Tonduti, Davide, Van De Warrenburg, Bart P., Vázquez-López, Maria, Venkateswaran, Sunita, Wasling, Pontus, Wassmer, Evangeline, Webster, Richard I., Wiegand, Gert, Yoon, Grace, Rotteveel, Joost, Schiffmann, Raphael, Van Der Knaap, Marjo S., Vanderver, Adeline, Martos-Moreno, Gabriel, Polychronakos, Constantin, Wolf, Nicole I., and Bernard, Geneviève

Abstract

Context: 4H or POLR3-related leukodystrophy is an autosomal recessive disorder typically characterized by hypomyelination, hypodontia, and hypogonadotropic hypogonadism, caused by biallelic pathogenic variants in POLR3A, POLR3B, POLR1C, and POLR3K. The endocrine and growth abnormalities associated with this disorder have not been thoroughly investigated to date. Objective: To systematically characterize endocrine abnormalities of patients with 4H leukodystrophy. Design: An international cross-sectional study was performed on 150 patients with genetically confirmed 4H leukodystrophy between 2015 and 2016. Endocrine and growth abnormalities were evaluated, and neurological and other non-neurological features were reviewed. Potential genotype/phenotype associations were also investigated. Setting: This was a multicenter retrospective study using information collected from 3 predominant centers. Patients: A total of 150 patients with 4H leukodystrophy and pathogenic variants in POLR3A, POLR3B, or POLR1C were included. Main Outcome Measures: Variables used to evaluate endocrine and growth abnormalities included pubertal history, hormone levels (estradiol, testosterone, stimulated LH and FSH, stimulated GH, IGF-I, prolactin, ACTH, cortisol, TSH, and T4), and height and head circumference charts. Results: The most common endocrine abnormalities were delayed puberty (57/74; 77% overall, 64% in males, 89% in females) and short stature (57/93; 61%), when evaluated according to physician assessment. Abnormal thyroid function was reported in 22% (13/59) of patients. Conclusions: Our results confirm pubertal abnormalities and short stature are the most common endocrine features seen in 4H leukodystrophy. However, we noted that endocrine abnormalities are typically underinvestigated in this patient population. A prospective study is required to formulate evidence-based recommendations for management of the endocrine manifestations of this disorder.

Published
2021

22. Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C

Author

Pelletier, Félixe, primary, Perrier, Stefanie, additional, Cayami, Ferdy K, additional, Mirchi, Amytice, additional, Saikali, Stephan, additional, Tran, Luan T, additional, Ulrick, Nicole, additional, Guerrero, Kether, additional, Rampakakis, Emmanouil, additional, van Spaendonk, Rosalina M L, additional, Naidu, Sakkubai, additional, Pohl, Daniela, additional, Gibson, William T, additional, Demos, Michelle, additional, Goizet, Cyril, additional, Tejera-Martin, Ingrid, additional, Potic, Ana, additional, Fogel, Brent L, additional, Brais, Bernard, additional, Sylvain, Michel, additional, Sébire, Guillaume, additional, Lourenço, Charles Marques, additional, Bonkowsky, Joshua L, additional, Catsman-Berrevoets, Coriene, additional, Pinto, Pedro S, additional, Tirupathi, Sandya, additional, Strømme, Petter, additional, de Grauw, Ton, additional, Gieruszczak-Bialek, Dorota, additional, Krägeloh-Mann, Ingeborg, additional, Mierzewska, Hanna, additional, Philippi, Heike, additional, Rankin, Julia, additional, Atik, Tahir, additional, Banwell, Brenda, additional, Benko, William S, additional, Blaschek, Astrid, additional, Bley, Annette, additional, Boltshauser, Eugen, additional, Bratkovic, Drago, additional, Brozova, Klara, additional, Cimas, Icíar, additional, Clough, Christopher, additional, Corenblum, Bernard, additional, Dinopoulos, Argirios, additional, Dolan, Gail, additional, Faletra, Flavio, additional, Fernandez, Raymond, additional, Fletcher, Janice, additional, Garcia Garcia, Maria Eugenia, additional, Gasparini, Paolo, additional, Gburek-Augustat, Janina, additional, Gonzalez Moron, Dolores, additional, Hamati, Aline, additional, Harting, Inga, additional, Hertzberg, Christoph, additional, Hill, Alan, additional, Hobson, Grace M, additional, Innes, A Micheil, additional, Kauffman, Marcelo, additional, Kirwin, Susan M, additional, Kluger, Gerhard, additional, Kolditz, Petra, additional, Kotzaeridou, Urania, additional, La Piana, Roberta, additional, Liston, Eriskay, additional, McClintock, William, additional, McEntagart, Meriel, additional, McKenzie, Fiona, additional, Melançon, Serge, additional, Misbahuddin, Anjum, additional, Suri, Mohnish, additional, Monton, Fernando I, additional, Moutton, Sebastien, additional, Murphy, Raymond P J, additional, Nickel, Miriam, additional, Onay, Hüseyin, additional, Orcesi, Simona, additional, Özkınay, Ferda, additional, Patzer, Steffi, additional, Pedro, Helio, additional, Pekic, Sandra, additional, Pineda Marfa, Mercedes, additional, Pizzino, Amy, additional, Plecko, Barbara, additional, Poll-The, Bwee Tien, additional, Popovic, Vera, additional, Rating, Dietz, additional, Rioux, Marie-France, additional, Rodriguez Espinosa, Norberto, additional, Ronan, Anne, additional, Ostergaard, John R, additional, Rossignol, Elsa, additional, Sanchez-Carpintero, Rocio, additional, Schossig, Anna, additional, Senbil, Nesrin, additional, Sønderberg Roos, Laura K, additional, Stevens, Cathy A, additional, Synofzik, Matthis, additional, Sztriha, László, additional, Tibussek, Daniel, additional, Timmann, Dagmar, additional, Tonduti, Davide, additional, van de Warrenburg, Bart P, additional, Vázquez-López, Maria, additional, Venkateswaran, Sunita, additional, Wasling, Pontus, additional, Wassmer, Evangeline, additional, Webster, Richard I, additional, Wiegand, Gert, additional, Yoon, Grace, additional, Rotteveel, Joost, additional, Schiffmann, Raphael, additional, van der Knaap, Marjo S, additional, Vanderver, Adeline, additional, Martos-Moreno, Gabriel Á, additional, Polychronakos, Constantin, additional, Wolf, Nicole I, additional, and Bernard, Geneviève, additional

Published
2020
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27. Structural brain anomalies in patients with FOX1 syndrome and in Foxg1+/− mice

Author

Pringsheim, Milka, Mitter, Diana, Schröder, Simone, Warthemann, Rita, Plümacher, Kim, Kluger, Gerhard, Baethmann, Martina, Bast, Thomas, Braun, Sarah, Büttel, Hans‐Martin, Conover, Elizabeth, Courage, Carolina, Datta, Alexandre N., Eger, Angelika, Grebe, Theresa A., Hasse‐Wittmer, Annette, Heruth, Marion, Höft, Karen, Kaindl, Angela M., Karch, Stephanie, Kautzky, Torsten, Korenke, Georg C., Kruse, Bernd, Lutz, Richard E., Omran, Heymut, Patzer, Steffi, Philippi, Heike, Ramsey, Keri, Rating, Tina, Rieß, Angelika, Schimmel, Mareike, Westman, Rachel, Zech, Frank‐Martin, Zirn, Birgit, Ulmke, Pauline A., Sokpor, Godwin, Tuoc, Tran, Leha, Andreas, Staudt, Martin, and Brockmann, Knut

Subjects
ddc:610
Published
2019

28. Structural brain anomalies in patients with FOXG 1 syndrome and in Foxg1+/− mice

Author

Pringsheim, Milka, Mitter, Diana, Schröder, Simone, Warthemann, Rita, Plümacher, Kim, Kluger, Gerhard, Baethmann, Martina, Bast, Thomas, Braun, Sarah, Büttel, Hans‐Martin, Conover, Elizabeth, Courage, Carolina, Datta, Alexandre N., Eger, Angelika, Grebe, Theresa A., Hasse‐Wittmer, Annette, Heruth, Marion, Höft, Karen, Kaindl, Angela M., Karch, Stephanie, Kautzky, Torsten, Korenke, Georg C., Kruse, Bernd, Lutz, Richard E., Omran, Heymut, Patzer, Steffi, Philippi, Heike, Ramsey, Keri, Rating, Tina, Rieß, Angelika, Schimmel, Mareike, Westman, Rachel, Zech, Frank‐Martin, Zirn, Birgit, Ulmke, Pauline A., Sokpor, Godwin, Tuoc, Tran, Leha, Andreas, Staudt, Martin, and Brockmann, Knut

Subjects
nervous system, Structural brain anomalies
Abstract

Objective: FOXG1 syndrome is a rare neurodevelopmental disorder associated with heterozygous FOXG1 variants or chromosomal microaberrations in 14q12. The study aimed at assessing the scope of structural cerebral anomalies revealed by neuroimaging to delineate the genotype and neuroimaging phenotype associations. Methods: We compiled 34 patients with a heterozygous (likely) pathogenic FOXG1 variant. Qualitative assessment of cerebral anomalies was performed by standardized re-analysis of all 34 MRI data sets. Statistical analysis of genetic, clinical and neuroimaging data were performed. We quantified clinical and neuroimaging phenotypes using severity scores. Telencephalic phenotypes of adult Foxg1+/- mice were examined using immunohistological stainings followed by quantitative evaluation of structural anomalies. Results: Characteristic neuroimaging features included corpus callosum anomalies (82%), thickening of the fornix (74%), simplified gyral pattern (56%), enlargement of inner CSF spaces (44%), hypoplasia of basal ganglia (38%), and hypoplasia of frontal lobes (29%). We observed a marked, filiform thinning of the rostrum as recurrent highly typical pattern of corpus callosum anomaly in combination with distinct thickening of the fornix as a characteristic feature. Thickening of the fornices was not reported previously in FOXG1 syndrome. Simplified gyral pattern occurred significantly more frequently in patients with early truncating variants. Higher clinical severity scores were significantly associated with higher neuroimaging severity scores. Modeling of Foxg1 heterozygosity in mouse brain recapitulated the associated abnormal cerebral morphology phenotypes, including the striking enlargement of the fornix. Interpretation: Combination of specific corpus callosum anomalies with simplified gyral pattern and hyperplasia of the fornices is highly characteristic for FOXG1 syndrome. Open-Access-Publikationsfonds 2019 peerReviewed

Published
2019

29. Measuring social participation in children with chronic health conditions : validation and reference values of the child and adolescent scale of participation (CASP) in the German context

Author

Bock, Freia de, Bosle, Catherin, Farwick, Christine, Oepen, Johannes, Philippi, Heike, Urschitz, Michael Siegfried, Bock, Freia de, Bosle, Catherin, Farwick, Christine, Oepen, Johannes, Philippi, Heike, and Urschitz, Michael Siegfried

Abstract

Background: While ICF-CY-based models of care are promising avenues for improving participation of children with chronic health conditions, feasible and valid instruments to assess participation as an outcome in routine are still needed. We aimed to validate a German parent-report version of the Child and Adolescent Scale of Participation (CASP) in children with chronic health conditions of different severity. Methods: Cross-sectional data were collected in 327 children (mean age 7.8 years, 55% boys) from two paediatric centres (n = 112) and one population-based sample (n = 215). Cronbach’s alpha, factor analyses, face validity assessments, correlation analyses, receiver operating characteristics (ROC) curves, and parent-reported health-related quality of life (HRQoL: KINDL) were used to examine internal consistency, test-retest reliability, and capacity to differentiate between disease severity groups. Disease severity was operationalized according to ICD-diagnosis groups and/or parent-reports on health problems, medical and educational support, and medication. A newly developed item "overall perceived participation" was added to the CASP and evaluated. Results: We found good to excellent content validity, excellent internal consistency, and good-to-excellent test-retest reliability of the instrument. While children with mild disease had a significantly greater extent of participation (higher CASP scores) than children with severe disease, they did not differ from healthy children. Children with mild compared to severe disease much more differed in participation as measured by the CASP compared to the KINDL (area under the ROC curve: 0.92 vs. 0.75). In addition, the item "overall perceived participation" was highly correlated (r = 0.86) with the CASP total score, indicating the potential value of this specific single item. Finally, we provided preliminary reference values for the CASP obtained in a population-based sample of children without chronic health conditio

Published
2019

31. Structural brain anomalies in patients with FOXG 1 syndrome and in Foxg1+/− mice

Author

Pringsheim, Milka, primary, Mitter, Diana, additional, Schröder, Simone, additional, Warthemann, Rita, additional, Plümacher, Kim, additional, Kluger, Gerhard, additional, Baethmann, Martina, additional, Bast, Thomas, additional, Braun, Sarah, additional, Büttel, Hans‐Martin, additional, Conover, Elizabeth, additional, Courage, Carolina, additional, Datta, Alexandre N., additional, Eger, Angelika, additional, Grebe, Theresa A., additional, Hasse‐Wittmer, Annette, additional, Heruth, Marion, additional, Höft, Karen, additional, Kaindl, Angela M., additional, Karch, Stephanie, additional, Kautzky, Torsten, additional, Korenke, Georg C., additional, Kruse, Bernd, additional, Lutz, Richard E., additional, Omran, Heymut, additional, Patzer, Steffi, additional, Philippi, Heike, additional, Ramsey, Keri, additional, Rating, Tina, additional, Rieß, Angelika, additional, Schimmel, Mareike, additional, Westman, Rachel, additional, Zech, Frank‐Martin, additional, Zirn, Birgit, additional, Ulmke, Pauline A., additional, Sokpor, Godwin, additional, Tuoc, Tran, additional, Leha, Andreas, additional, Staudt, Martin, additional, and Brockmann, Knut, additional

Published
2019
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32. Standardized Infant NeuroDevelopmental Assessment developmental and socio-emotional scales: reliability and predictive value in an at-risk population.

Author

Hadders‐Algra, Mijna, Tacke, Uta, Pietz, Joachim, Rupp, André, Philippi, Heike, and Hadders-Algra, Mijna

Subjects
INFANTS, EXCEPTIONAL children, SELF-injurious behavior, PREDICTIVE validity, CEREBRAL palsy, INTELLECTUAL disabilities, RESEARCH, PREDICTIVE tests, RESEARCH evaluation, RESEARCH methodology, EVALUATION research, MEDICAL cooperation, PSYCHOLOGICAL tests, BEHAVIOR disorders in children, PSYCHOMETRICS, COMPARATIVE studies, ALEXITHYMIA, RESEARCH funding, PEOPLE with intellectual disabilities, NEUROLOGIC examination, STANDARDS
Abstract

Aim: To assess the reliability and predictive validity of the developmental and socio-emotional scales of the Standardized Infant NeuroDevelopmental Assessment (SINDA).Method: To assess reliability, two sets of three assessors forming eight assessor-pairs independently rated the developmental and socio-emotional scales of 60 infants. To evaluate predictive validity, 223 infants (gestational age 30wks [range 23-41wks]; 117 males, 106 females) attending a non-academic outpatient clinic were assessed by different assessors with SINDA's neurological, developmental, and socio-emotional scales. Atypical neurodevelopmental outcome at a corrected age of 24 months or older implied a Bayley Mental or Psychomotor Developmental Index score of less than 70 or neurological disorder (including cerebral palsy). Behavioural and emotional disorders were classified according to the International Classification of Diseases, 10th Revision. Predictive values were calculated from SINDA (2-12mo corrected age, median 7mo) and typical versus atypical outcome, and for intellectual disability only (Mental Developmental Index <70).Results: Assessors highly agreed on the developmental and socio-emotional assessments (developmental scores: Spearman's rank correlation coefficient ρ=0.972; single socio-emotional behaviour items: Cohen's κ=0.783-0.896). At 24 months or older, 65 children had atypical outcome. Atypical neurological scores predicted atypical outcome (sensitivity 83%, specificity 96%); atypical developmental scores predicted intellectual disability (sensitivity 77%, specificity 92%). Atypical emotionality and atypical self-regulation were associated with behavioural and emotional disorders.Interpretation: SINDA's three scales are reliable, and have a satisfactory predictive validity for atypical developmental outcome at 24 months or older in a non-academic outpatient setting. SINDA's developmental scale has promising predictive validity for intellectual disability. SINDA's socio-emotional scale is a tool for caregiver counselling.What This Paper Adds: Standardized Infant NeuroDevelopmental Assessment (SINDA)'s developmental and socio-emotional scales have excellent interrater reliability. Replication of the satisfactory validity of SINDA's neurological scale for atypical outcome. [ABSTRACT FROM AUTHOR]

Published
2020
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36. Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale.

Author

Hadders‐Algra, Mijna, Tacke, Uta, Pietz, Joachim, Rupp, André, and Philippi, Heike

Subjects
PREDICTIVE validity, NEUROLOGIC examination, INFANTS, INTRACLASS correlation, GESTATIONAL age
Abstract

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Published
2019
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