Attitudes des parents à l'égard des tests génétiques cliniques pour le trouble du spectre de l'autisme - Données provenant d'un échantillon norvégien

Aperçu: G.M.

Les tests génétiques cliniques (TGC) des enfants atteints de troubles du spectre de l'autisme (TSA ) peuvent avoir des effets positifs et négatifs.  

La connaissance des attitudes des parents est nécessaire pour assurer une bonne participation des soignants, ce qui est crucial pour un diagnostic précis et une gestion clinique efficace. Cette étude visait à évaluer l'attitude des parents vis-à-vis du TGC pour les TSA. Les parents de la Norwegian Autism Society ont reçu un questionnaire précédemment non testé et 1455 ont répondu.

Pourvu que cela puisse contribuer à une explication occasionnelle du TSA de leur enfant, 76% seraient soumis au TGC. Si cela améliorait les possibilités d'interventions précoces, 74% étaient favorables au TGC. Entre 49 et 67% ont convenu que le TGC pourrait avoir un impact négatif sur l'assurance maladie, accroître son inquiétude pour l'avenir de l'enfant et causer des conflits familiaux. Les parents contre le TGC (9%) étaient moins optimistes en ce qui concerne les effets positifs, mais pas plus préoccupés par les impacts négatifs. La gravité du diagnostic TSA chez les enfants avait une faible association positive avec les attitudes positives des parents envers le TGC (les valeurs p varient de <0,001 à 0,975). Les parents préfèrent que le TGC soit offert à ceux qui ont un enfant avec un diagnostic de TSA (65%), lorsque le développement de l'enfant s'écarte de la normale (48%) ou avant la grossesse (36%). 

La majorité des parents d'enfants avec un diagnostic de TSA sont favorables au TGC en raison des possibilités d'explication étiologique. 

Int J Mol Sci. 2017 May 18;18(5). pii: E1078. doi: 10.3390/ijms18051078.

Parents' Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder-Data from a Norwegian Sample

Johannessen J^1,2, Nærland T^3,4, Hope S^5,6, Torske T⁷, Høyland AL^8,9, Strohmaier J¹⁰, Heiberg A¹¹, Rietschel M¹², Djurovic S^13,14,15, Andreassen OA^16,17.

Author information

1

NORMENT, KG Jebsen Centre for Psychosis Research, University of Oslo, Oslo 0424, Norway. jarle@autismeforeningen.no.

2

Autism Society Norway, Oslo 0609, Norway. jarle@autismeforeningen.no.

3

NORMENT, KG Jebsen Centre for Psychosis Research, University of Oslo, Oslo 0424, Norway. ternae@ous-hf.no.

4

NevSom, Department of Rare Disorders and Disabilities, Oslo University Hospital, Oslo 0424, Norway. ternae@ous-hf.no.

5

NORMENT, KG Jebsen Centre for Psychosis Research, University of Oslo, Oslo 0424, Norway. sighop@ous-hf.no.

6

Department of Neurohabilitation, Oslo University Hospital, Oslo 0424, Norway. sighop@ous-hf.no.

7

Division of Mental Health and Addiction, Vestre Viken Hospital Trust, Drammen 3004, Norway. tonje.torske@vestreviken.no.

8

Regional Centre for Child and Youth Mental Health and Child Welfare, Department of Mental Health, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim 7491, Norway. anne.lise.hoyland@ntnu.no.

9

Department of Pediatrics, St. Olavs Hospital, Trondheim University Hospital, Trondheim 7006, Norway. anne.lise.hoyland@ntnu.no.

10

Department of Genetic Epidemiology in Psychiatry, Central Institute of Mental Health, Medical Faculty Mannheim, University of Heidelberg, Mannheim 68159, Germany. Jana.Strohmaier@zi-mannheim.de.

11

Department of Medical Genetics, Oslo University Hospital, Oslo 0424, Norway. arvhei@ous-hf.no.

12

Department of Genetic Epidemiology in Psychiatry, Central Institute of Mental Health, Medical Faculty Mannheim, University of Heidelberg, Mannheim 68159, Germany. Marcella.Rietschel@zi-mannheim.de.

13

NORMENT, KG Jebsen Centre for Psychosis Research, University of Oslo, Oslo 0424, Norway. srdjan.djurovic@medisin.uio.no.

14

Department of Medical Genetics, Oslo University Hospital, Oslo 0424, Norway. srdjan.djurovic@medisin.uio.no.

15

Department of Clinical Science, University of Bergen, Bergen 5021, Norway. srdjan.djurovic@medisin.uio.no.

16

NORMENT, KG Jebsen Centre for Psychosis Research, University of Oslo, Oslo 0424, Norway. ole.andreassen@medisin.uio.no.

17

Division of Mental Health and Addiction, Oslo University Hospital, Oslo 0315, Norway. ole.andreassen@medisin.uio.no

Abstract

Clinical genetic testing (CGT) of children with autism spectrum disorder (ASD) may have positive and negative effects. Knowledge about parents' attitudes is needed to ensure good involvement of caregivers, which is crucial for accurate diagnosis and effective clinical management. This study aimed to assess parents' attitudes toward CGT for ASD. Parent members of the Norwegian Autism Society were given a previously untested questionnaire and 1455 answered. Linear regression analyses were conducted to evaluate contribution of parent and child characteristics to attitude statements. Provided it could contribute to a casual explanation of their child's ASD, 76% would undergo CGT. If it would improve the possibilities for early interventions, 74% were positive to CGT. Between 49-67% agreed that CGT could have a negative impact on health insurance, increase their concern for the child's future and cause family conflicts. Parents against CGT (9%) were less optimistic regarding positive effects, but not more concerned with negative impacts. The severity of the children's ASD diagnosis had a weak positive association with parent's positive attitudes to CGT (p-values range from <0.001 to 0.975). Parents prefer that CGT is offered to those having a child with ASD (65%), when the child's development deviates from normal (48%), or before pregnancy (36%). A majority of the parents of children with ASD are positive to CGT due to possibilities for an etiological explanation.

PMID: 28524073

DOI:  0.3390/ijms18051078