Quality of Life Assessed With the PAH SYMPACT Questionnaire

Study Overview
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Brief Summary
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Researchers are evaluating quality of life in pulmonary hypertension subjects using the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT) Questionnaire and assessing the questionnaires' performance with regard to relationship to other markers of disease severity, response to treatment, and outcome in a clinical practice setting.

Detailed Description
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Subjects will be recruited from among those seen at the Mayo Pulmonary Hypertension Clinic. The PAH-SYMPACT questionnaire will be administered either in written form or by telephone interview. On the second 100 patients implement a standardized palliative care referral program for patients with Group 1 and 3 PH and high SYMPACT scores> 1.0.

Official Title
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Quality of Life Assessed With the PAH SYMPACT Questionnaire in the Pulmonary Hypertension Clinic

Conditions
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Pulmonary Hypertension

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Age 18 years or above Consents to participate Documented group I PAH based upon these hemodynamic criteria: (mPAP > 20, PCW 18 or less, PVR > 3 Wood units Mean PAP > 20, PCW ≤ 18, PVR > 3 Wood units Parenchymal lung disease that in the opinion of the investigator qualifies patient as group III PH Documented chronic thromboembolic pulmonary hypertension or chronic thromboembolic disease with intent to treat with surgery, balloon pulmonary angioplasty, and/or PH medication Exclusion Criteria: Left sided heart disease (LVEF<50%, PAWP>18) Any other known concomitant life-threatening disease with a life expectancy <12 months Any other clinically relevant and/or serious chronic medical condition that would affect study participation in the opinion of the investigator Non English speaking

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| usual care<br>The patient will be seen in the PH clinic and will be approached to consent and participate in the SYMPACT trial. They will not be randomized to palliative care. | |
| palliative care<br>The patient will be seen in the PH clinic and will be approached to consent and participate in the SYMPACT trial. Based on the patients in Group 1 and 3 PH and a high SYMPACT score> 1.0 in any domain they will be randomized to receive standard care or a palliative care initial consult. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of life in pulmonary hypertension subjects | Measured using the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT) Questionnaire using a scale of 0=no, 1=mild, 2=moderate, 3=severe, and 4=very severe | Baseline | 
| Quality of life in pulmonary hypertension subjects | Measured using the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT) Questionnaire using a scale of 0=no, 1=mild, 2=moderate, 3=severe, and 4=very severe | 14 months |