Parental Attitudes Toward Clinical Genomic Sequencing in Children With Critical Cardiac Disease.
Pediatr Crit Care Med
; 22(8): e419-e426, 2021 08 01.
Article
in En
| MEDLINE
| ID: mdl-33591072
ABSTRACT
OBJECTIVES:
Through improving diagnostics and prognostics genomic sequencing promises to significantly impact clinical decisions for children with critical cardiac disease. Little is known about how families of children with critical cardiac disease perceive the impact of genomic sequencing on clinical care choices.DESIGN:
Qualitative interview study.SETTING:
A high-volume, tertiary pediatric heart center.SUBJECTS:
Families of children with critical cardiac disease.INTERVENTIONS:
None. MEASUREMENTS AND MAINRESULTS:
Thematic analysis of interview response content. Thirty-five families were interviewed. Three themes emerged 1) benefits versus challenges of having genomic sequencing results, and 2) fears of clinical applications of genomic sequencing, and 3) nonclinical fears related to genomic sequencing. Participants struggled with perceived uses of genomic sequencing-derived knowledge. They described comfort in foreknowledge of their child's likely disease course but articulated significant apprehension around participating in care decisions with limited knowledge of genomic sequencing, genomic sequencing uses to inform clinical resource rationing decisions, and genomic sequencing uses by third parties impacting financial pressures families experience caring for a child with critical cardiac disease.CONCLUSIONS:
Families' perceptions of genomic sequencing uses in critical cardiac disease appear to strain their overall trust in the health system. Erosion of trust is concerning because the potential of genomic sequencing in critical cardiac disease will be unrealized if families are unwilling to undergo genomic sequencing, let alone to participate in the ongoing research needed to link genomic sequencing variants to clinical outcomes. Our findings may have implications for genomic sequencing use in children with other critical, high-acuity diseases.
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Family
/
Heart Diseases
Type of study:
Diagnostic_studies
/
Prognostic_studies
/
Qualitative_research
Limits:
Child
/
Humans
Language:
En
Journal:
Pediatr Crit Care Med
Journal subject:
PEDIATRIA
/
TERAPIA INTENSIVA
Year:
2021
Document type:
Article
Affiliation country:
Canada