Skip to main content

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