This is a cross-sectional observational study designed to assess the disease burden and quality of life in individuals with LQTS 2 and 3. Each participant will answer each patient-reported outcome questionnaire only once over a 6-month period. The study will enroll up to 200 participants.
Eligibility
Sex
ALL
Min age
18 Years
Max age
—
Healthy volunteers
No
Inclusion Criteria:
1. The participant is willing and provides written informed consent to participate in this study.
2. Male or female participant of at least 18 years of age, English-speaking.
3. Confirmed genetic diagnosis of LQT2 or 3, demonstrated by one of the following:
* Genetic testing report (pathogenic or likely pathogenic (P/LP) mutation) in KCHN2 or SCN5a genes) or,
* A signed physician's letter confirming genetic diagnosis of LQTS 2 or 3.
4. Documented QTc ≥ 480 ms within the last year, demonstrated by one of the following:
* 12-lead electrocardiogram (ECG), or
* A signed physician's letter confirming an ECG demonstrating QTc value ≥ 480 ms.
5. The participant is able to operate a smartphone and a companion watch. \*The number of participants with QTc between 480 and 500 ms will be limited to 50.
Exclusion Criteria:
1. Current participation in another clinical trial involving a drug or device.
2. Participants unwilling to use an iPhone or Apple Watch for the duration of the study.
3. Known diagnosis of Brugada Syndrome
4. Participants unwilling to comply with outlined procedures.
Primary outcome measure(s)
Quality of Life (QoL) — Month 1 Score from the Satisfaction With Life Scale (SWLS)
Quality of Life (QoL) — Month 1 Score from the Quality of Life in Life-Threatening Illness - Late Adolescents and Adults Scale (QOL-LAS)
Disease burden — Month 2 Score from the CDC HRQOL-4 (Health-Related Quality of Life)
Disease burden — month 2 Score from the self-reported NYHA (New York Heart Association Classification)
Disease burden — Month 2 Score from the Health Actions Evaluation (HAE-10)
Illness perception — Month 3 Score from the Brief Illness Perception Questionnaire (B-IPQ)
Illness perception — Month 3 Score from the Illness Intrusiveness Questionnaire (IIQ)
Psychosocial health, including distress, social and psychological well-being, and cardiac-specific measures, — Month 4 Score from the Depression, Anxiety, and Stress Scale-21 (DASS-21)
Psychosocial health, including distress, social and psychological well-being, and cardiac-specific measures, — Month 4 Score from the UCLA 3-Item Loneliness Scale
Psychosocial health, including distress, social and psychological well-being, and cardiac-specific measures, — Month 3 Score from the Multidimensional Scale of Perceived Social Support (MSPSS)
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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