"Living with" CACNA1A-related hemiplegic migraine, a disease concept model.

ABSTRACT:

Introduction

CACNA1A-related Hemiplegic Migraine (HM) is a rare neurological disorder distinguished by paroxysmal episodes of hemiparesis/hemiplegia with and without headache. Clinical features have been widely characterized, yet the impacts of the paroxysmal events on the patient and caregiver have not been thoroughly explored. Disease concept models are formal frameworks used to describe the lived experiences of patients and their families, offering a source for surrogate endpoints for clinical trials.

Methods

We completed 13 semi-structured interviews with caregivers of 12 individuals diagnosed with CACNA1A-related HM. We methodically coded themes, grouping concepts into three domains. We measured the occurrence of concepts throughout all interviews and subg

SUBMITTER: Schaare D 

PROVIDER: S-EPMC11565606 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature