[State of practice: care pathways leading to the diagnostic assessment of neurodevelopmental disorders in children 0-7 years old]
Alarie M, Ghandour E.K, Ruest M
Record ID 32018001741
French
Original Title:
État des pratiques - Trajectoires de services menant à l’évaluation diagnostique des troubles neurodéveloppementaux chez les enfants de la naissance à sept ans
Authors' objectives:
Despite the investment and work carried out thus far, the ministère de la Santé et des
Services sociaux (MSSS) notes that certain issues persist with regard to care pathways
leading to the diagnostic assessment of neurodevelopmental disorders, particularly
regarding accessibility, efficiency, coordination, and continuity of services. In this context,
MSSS seeks to define and implement a model care pathway. This model care pathway
would include all services leading to the diagnostic assessment of neurodevelopmental
disorders in children from birth to age 7, in order to harmonize the offer of services across
the province, to include the transition to school, and to adequately meet the needs of
these children and their families. INESSS has been specifically mandated to carry out a “state of practice” study of the
care pathways leading to the diagnostic assessment of neurodevelopmental disorders in
children from birth to age 7, by documenting the current organization of services, the
issues presently encountered, and the essential components of a model care pathway.
This report, along with work by researchers at the university-affiliated institutes, will
contribute to the development of the model pathway.
This state of practice report is also intended for managers in the health care and social
services network (réseau de la santé et des services sociaux, RSSS) who are
responsible for the offer of services to children with developmental difficulties or delay,
for RSSS practitioners who work with these children, and for the many intersectoral
partners involved.
Authors' results and conclusions:
RESULTS: The documents that were received describe 81 care pathways across 28 institutions in
the RSSS, with an average of three pathways being reported per institution. Following
monitoring, five main steps leading to the diagnostic assessment of neurodevelopmental
disorders are generally described in these documents: 1) screening, 2) early intervention
services, 3) professional assessments, 4) diagnostic assessment, and 5) notification of
the findings of the diagnostic assessment process and referral to specialized services.
Authors' methods:
The objectives of this state of practice report are to document:
1. the care pathways leading to the diagnostic assessment of neurodevelopmental
disorders in children from birth to 7 years of age that are currently used in the
various regions of Québec;
2. issues associated with the current service offerings;
3. the essential components of a model care pathway that would better meet the
needs of children and their families.
The findings are based on the analysis of three types of collected data. Firstly,
28 facilities sent documents to INESSS presenting the care pathways planned at their
respective sites for children who are showing signs of neurodevelopmental disorders.
Secondly, data from three clinical administrative databases (SMOD, MED-ECHO and
I-CLSC1) were examined. A retrospective cohort study was conducted to quantitatively
describe the use of services offered by CLSCs (centre local de services
communautaires) to children showing signs of neurodevelopmental disorders, based on a
cohort of children with autism spectrum disorder (ASD) and another cohort of children
with attention deficit hyperactivity disorder (ADHD).
Thirdly, the perspectives of three groups of stakeholders were gathered through
consultations with: 1) 16 parents of children who had received a diagnostic assessment
for neurodevelopmental disorders; 2) 17 clinicians who contribute to the offer of services
leading to the diagnostic assessment for neurodevelopmental disorders; and
3) 15 managers who are responsible for services related to the diagnostic assessment for
neurodevelopmental disorders. The data were analyzed using the qualitative analysis
method developed by Braun and Clarke [2006]. Following identification of the main
themes, a cross-analysis was carried out to compare the perspectives of the three groups
of stakeholders (parents, clinicians, managers) on the different topics discussed.
Finally, the results from the three types of collected data were integrated in order to reach
general conclusions. Although the original analysis plan was to create a separate cohort of children for each of
the neurodevelopmental disorders of interest, various issues related to the availability
and validity of the data that can be used to identify children with different
neurodevelopmental disorders limited the creation of individual cohorts. Using two
targeted databases (i.e., SMOD and MED-ECHO), two distinct cohorts of children who
were diagnosed with either 1) autism spectrum disorder (ASD) or 2) attention deficit
hyperactivity disorder (ADHD) in 2019-2020 were created. Each of these two cohorts is
described with respect to age, sex, and history of other diagnosed neurodevelopmental
disorders. In 2019-2020, 2,980 new cases of ASD and 12,407 new cases of ADHD in
children aged 1 to 10 years were identified. Based on the data collected during the consultations and from the grey literature, four
types of issues were identified related to care pathways leading to the diagnostic
assessment for neurodevelopmental disorders: 1) accessibility, 2) coordination of services
and continuity, 3) methods of screening and assessment, and 4) human resources. The participating stakeholders also identified several components that need to be
considered to facilitate the implementation of a province-wide model care pathway. From
the outset, stakeholders emphasized the importance of finding the right balance between
harmonization of practices and flexibility, particularly given the fact that the different
regions of Québec do not all face the same challenges.
CONCLUSIONS: Analysis of all the data collected for the purposes of this state of practice unequivocally
reveals great variability across Québec in the organization of services offered to children
suspected of having a neurodevelopmental disorder. In a setting where considerable
proportions of children present complex neurodevelopmental profiles (e.g., a history of
several neurodevelopmental disorders), the services provided are currently set in care
pathways that are mostly organized according to the neurodevelopmental disorder
diagnosis. These face accessibility, continuity and coordination challenges, as reported in
the documents analyzed and by the various stakeholders consulted.
Details
Project Status:
Completed
Year Published:
2021
URL for published report:
https://www.inesss.qc.ca/en/publications/publications/publication/trajectoires-de-services-menant-a-levaluation-diagnostique-des-troubles-neurodeveloppementaux-chez-les-enfants-de-la-naissance-a-sept-ans.html
English language abstract:
An English language summary is available
Publication Type:
Other
Country:
Canada
Province:
Quebec
MeSH Terms
- Neurodevelopmental Disorders
- Child
- Diagnosis
- Early Diagnosis
- Autism Spectrum Disorder
- Developmental Disabilities
- Attention Deficit Disorder with Hyperactivity
Contact
Organisation Name:
Institut national d'excellence en sante et en services sociaux
Contact Address:
L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369
Contact Name:
demande@inesss.qc.ca
Contact Email:
demande@inesss.qc.ca
Copyright:
Gouvernement du Québec
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.