TABLE 1.

Specific items from the Genetic Counseling Outcome Scale (GCOS‐24) that were revised for the modified Genetic Counseling Outcome Scale (mGCOS‐24)

Original	Revised	Justification(s)
I am clear in my own mind why I am attending the clinical genetics service	I am clear in my own mind why my family is having genetic testing	The referral to undergo genetic testing by the non‐genetic clinician is part of the disclosure of the child’s diagnosis and thus may not be perceived as a distinct ‘clinical genetics service’ to the family The majority of the target population do not get referred to geneticists/genetic counselors after undergoing genetic testing. We believe that simplifying the items to refer to one component of the service ubiquitous to all families in this population (i.e., undergoing genetic testing) was needed Finally, we initially considered ensuring that the concept of ‘clinical genetics service’ is consistently understood to all families to encompass the referral to undergo genetic testing. However, considering points (a) and (b), this requires differentiating certain aspects of the service the families have experienced over others even when many other components occur within one clinical encounter. Specifically, ‘clinical genetics service’ begins when the clinician suggests the family to undergo genetic testing for their child and ends following genetic counseling after genetic results become available, if applicable, yet this service does not include their disclosure of the diagnosis, nor the referral for metabolic testing, and interventions. Considering the importance of care being perceived and experienced as continuous and coherent to the patient, we could not justify introducing this additional informational burden to the family
I understand what concerns brought me to the clinical genetics service	I understand what concerns brought my family to do genetics testing
I understand the reasons why my doctor referred me to the clinical genetics service	I understand the reasons why my doctor may have to refer my family to the clinical genetics service
I can explain what the condition means to people in my family who may need to know	I can explain what the neurodevelopmental condition means to people in my family who may need to know	Individuals with ASD or DD/ID may have other co‐morbidities and are undergoing investigations for other health conditions. Specifying neurodevelopmental condition was needed to ensure that the impact of genetic results was contextualized on the understanding of their child’s neurodevelopmental condition specifically

Abbreviations: ASD, Autism spectrum disorder; CMA, chromosomal microarray; DD/ID, Developmental delay/Intellectual disability.