Heritable Connective Tissue Disorders in Childhood: Increased Fatigue, Pain, Disability and Decreased General Health.
Jessica Warnink-KavelaarsLisanne E de KoningLies RombautMattijs W AlsemLeonie A MenkeJaap OosterlaanAnnemieke I BuizerRaoul H H Engelbertnull On Behalf Of The Pediatric Heritable Connective Tissue Disorders Study GroupPublished in: Genes (2021)
Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.