The study aims to longitudinally capture the full spectrum of symptoms, treatment utilization, and overall health-related quality of life (HRQoL) experienced by Immunoglobulin A nephropathy (IgAN) patients and their caregivers.
Diagnosis of IgAN, regardless of symptom or treatment history
Adult aged 18 or older; adult caregiver to an adult patient aged 18 or older; or adult caregiver to a pediatric patient under 18 years of age
US-based with a proficient understanding of and ability to read the English language
None
This study will involve patients who has received Immunoglobulin A nephropathy diagnosis in US.
Cohort
Prospective
No intervention
Other interventionParticipants and their caregivers will report home reported outcomes (HRO) data on symptom burden to understand symptom variability and health-related quality of life (HRQoL).
Other treatment
Other interventionParticipants and their caregivers will report HRO data on symptom burden and treatment usage to understand symptom variability and HRQoL.
Iptacopan
Other interventionParticipants and their caregivers will report HRO data on symptom burden and treatment usage to understand symptom variability and HRQoL including those taking iptacopan.
Atrasentan
Other interventionParticipants and their caregivers will report HRO data on symptom burden and treatment usage to understand symptom variability and HRQoL including those taking atrasentan.
Number of participants with IgAN specific symptoms
To assess and gain a comprehensive understanding of the patient-reported burden of Immunoglobulin A nephropathy (IgAN) using home-reported outcome (HRO) symptom tracking data. Patients will select from a list of suggested symptoms. The 10 symptoms most frequently reported will be presented and analyzed.
Average self-reported severity of each of these top 10 symptoms
To assess and gain a comprehensive understanding of the patient-reported burden of IgAN using HRO symptom tracking data.
Variability in self-reported severity of each of these top 10 symptoms
To assess and gain a comprehensive understanding of the patient-reported burden of IgAN using HRO symptom tracking data.
Average temporal frequency of treatment administration, for each IgAN-specific treatment
To characterize IgAN treatment utilization patterns.
Number of participants by reason for skipping treatment
To identify participant reported reasons for skipping treatment.
Differences in symptom occurrence for participants in each treatment group
Symptom occurrence (number of participants who report it) between patients in each treatment group will be presented.
Differences in symptom severity for participants in each treatment group
Symptom severity between patients in each treatment group will be presented. Severity is measured on a 1-5 severity scale with higher numbers indicating more severe symptoms.
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