What question did this study set out to answer?

To identify actionable items that address the needs of patients and caregivers involved in RASopathies.

March 12, 20260 citationsOpen Access

Patient and caregiver perspectives on neurodevelopmental and mental health care for RASopathies.

EEEvelyn M Elizondo AFAnne M Floyd AFAllison M. H. FoyUniversity of Minnesota Medical Center

Key Points

To identify actionable items that address the needs of patients and caregivers involved in RASopathies.
Conducted qualitative interviews with patients and caregivers
Analyzed participants' expressed needs and experiences
Developed actionable items for care and advocacy
Identified crucial needs shared by patients and caregivers
Highlighted gaps in current care delivery
Provided recommendations for future research and advocacy efforts

Abstract

This study identified a set of actionable items to inform research, care delivery, and advocacy that reflect the expressed needs and lived experiences of participants representing both caregivers and patients with RASopathies.

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