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Table 3 Spontaneously reported PAH symptoms and impacts selected for inclusion in the draft PRO

From: Development of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT®) questionnaire: a new patient-reported outcome instrument for PAH

 

n (%)

Symptoms (n = 25 patients)

 

 Shortness of breath

23 (92 %)

 Tiredness/fatigue/weakness/lack of energy

21 (84 %)

 Swelling in ankles or legs

19 (76 %)

 Rapid heartbeat/heart fluttering

19 (76 %)

 Chest pain/tightness

16 (64 %)

 Dizziness/lightheadedness

14 (56 %)

 Cough/dry cough

13 (52 %)

 Loss of appetite

10 (40 %)

 Swelling in stomach area

6 (24 %)

Impacts (n = 5 focus groups)a

 

Physical

 

 Stairs/exercise

5 (100 %)

 Carrying/lifting things

4 (80 %)

 Walking slower or with difficulty

3 (60 %)

Activities of Daily Living

 

 Household chores

5 (100 %)

 Errands

5 (100 %)

 Work (effects on career or school/reducing hours)

5 (100 %)

 Washing/dressing

3 (60 %)

Social Activities

 

 Needing help from others

4 (80 %)

 Going out to social activities

3 (60 %)

 Maintaining relationships

3 (60 %)

 Feeling embarrassed

2 (40 %)

Cognition

 

 Concentration/memory/articulating thoughts/slow thinking

3 (60 %)

Emotions

 

 Sad

4 (80 %)

 Frustrated/angry/mad

4 (80 %)

 Anxious/worried/stressed/loss of control

3 (60 %)

  1. aRefers to difficulties in the listed areas