The goal of this patient registry is to learn about the natural history in patients with chronic thromboembolic disease (CTD) and/or chronic thromboembolic pulmonary hypertension (CTEPH). The main question\[s\] it aims to answer are: * Long-term outcome after various types of treatment, including medication, balloon pulmonary angioplasty, and pulmonary endarterectomy * Effect of treatment on patient's quality of life and exercise tolerance Participants will be followed longitudinally to assess their health outcomes and quality of life via chart review and health quality surveys.
Study Type
OBSERVATIONAL
Enrollment
100
Patients who received medical, surgical or interventional treatment for chronic thromboembolic pulmonary hypertension will be followed and given quality of life questionnaires.
University of California San Francisco
San Francisco, California, United States
RECRUITINGTotal number of patients who survive
The total number of patients who are alive
Time frame: Through study completion, an average of 5 years
Changes in exercise tolerance
Measured by 6-min walk test, which will be done approximately every 3 months at follow up per standard of care
Time frame: Baseline to end of the study, an average of 5 years
Changes in supplemental oxygen use severity
Number of patients on supplemental oxygen, which will be recorded approximately every 3 months at follow up per standard of care. This will be compiled at the end of the study to provide overall change in measurement.
Time frame: Baseline to end of the study, an average of 5 years
Changes in New York Heart Association (NYHA) functional class
Grading of patients by NYHA functional class, which include functional capacity and objective assessment. This will be compiled at the end of the study to provide overall change in measurement.
Time frame: Baseline to end of the study, an average of 5 years
European Quality of Life Five Dimension (EQ-5D) - Scale Score
Assessment of quality of life will be measured using EQ-5D-5L. This instrument is a self-assessed, health-related, quality of life questionnaire that measures quality of life on a 5-component scale. The scores range from Level 1 to Level 5, with lower scores indicating a higher quality of life. This will be collected every 3 months and compiled at the end of the study to provide overall change in measurement.
Time frame: Baseline to end of the study, an average of 5 years
Changes in patients' emPHasis-10 scores
Assessed by the emPHasis-10 (pulmonary hypertension) instrument, which is an instrument specifically designed to assess the quality of life in patients with pulmonary hypertension. Each item will be scored from 0 to 5 where 0 was the best score. This will be collected every 3 months and compiled at the end of the study to assess overall change in measurement.
Time frame: Baseline to end of the study, an average of 5 years
Number of patients undergoing lung transplantation
Number of patients undergoing lung transplantation
Time frame: Baseline to end of the study, an average of 5 years
Changes in CTEPH-/CTED- specific medication
The frequency and dose of medication specifically for management of CTEPH or CTED, which will be assessed approximately every 3 months as routine medical follow up. This will be compiled at the end of the study to assess overall change.
Time frame: Baseline to end of the study, an average of 5 years
History of undergoing pulmonary endarterectomy
Number of patients undergoing pulmonary endarterectomy
Time frame: Through study completion, an average of 5 years
History of undergoing pulmonary balloon angioplasty
Number of patients undergoing pulmonary balloon angioplasty
Time frame: Through study completion, an average of 5 years
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