Review of the Living with Pulmonary Fibrosis (L-PF) questionnaire for measuring symptoms and impacts of progressive fibrosing interstitial lung disease (PF-ILD)
| Consensus recommendation | Relevant items from the L-PF | Comments |
| Interference on daily life of SoB (on exertion) in past 24 h | Interference on daily life of SoB Impacts module: 1) How much did shortness of breath prevent you from doing things you wanted to do? 2) How much did fear of becoming too short of breath limit your physical exertion? 17) How has shortness of breath affected your quality of life? | The L-PF has 17 items measuring the incidence, severity, frequency and interference of SoB upon exertion. Further thought is needed as to whether the three impact items on interference should be used in isolation and how a score would be calculated. The recall period for the three items on interference also assesses the past week, rather than 24 h. The other 14 items in the symptoms module assesses SoB over the past 24 h. The L-PF response scale (0–4 numeric scale) is consistent with consensus recommendations |
| Frequency of cough in past 24 h | Frequency of cough Symptoms module: 13) Over the last 24 h, how often did you cough? 14) Over the last 24 h, how often did you cough when you took a deep breath? 15) Over the last 24 h, how often did you cough when you were breathing hard or fast? 16) Over the last 24 h, how often did you cough when you over-exerted yourself? 17) Over the last 24 h, how often did coughing make you short of breath? | The L-PF has five items for measuring the frequency of cough over the past 24 h. Three other items assess the severity and incidence of cough. |
| Interference on daily life of fatigue in past week | Interference on daily life of fatigue Impacts module: 19) How much has your energy level affected your quality of life? | The L-PF questionnaire may lack specificity in the impact items for fatigue. There is only one fatigue-related item, which focuses on energy levels. If a treatment benefit on fatigue was expected, a fatigue-specific questionnaire may be needed in addition to the L-PF |
| Severity of physical functioning limitations in past week | Severity of physical functioning limitations Symptoms module: 4) How short of breath did walking up a short, gradual incline make you? 6) How short of breath did walking outside on a level surface make you? 7) How short of breath did walking from room to room inside your home make you? 8) How short of breath did getting ready to leave your home (e.g. find keys, put on coat, lock doors) make you? 10) How short of breath did doing light cleaning around the house make you? 12) How short of breath did lifting and carrying a light load a short distance make you? Impacts module: 14) How much did you have to pace yourself to make it through the day? 15) How much time did it take to get yourself ready to leave the house? | The L-PF has six items in the symptoms module (24 h) and two items in the impacts module (past week) that assess the severity of physical functioning. The items in the symptoms module focus on SoB. |
| Severity of ADL limitation in past week | Severity of ADL limitation Symptoms module: 1) How short of breath did getting dressed make you? 2) How short of breath did walking up one flight of stairs make you? 3) Over the last 24 h, how short of breath have you been while sitting down, relaxing, reading or watching TV? 5) How short of breath did grooming make you? 6) How short of breath did walking outside on a level surface make you? 9) How short of breath did bathing or showering make you? Impacts module: 3) How was your stamina when you exerted physically? | The L-PF has six items in the symptoms module (24 h) and one item in the impacts module (past week) that assess the severity of ADL limitation. The items in the symptoms module focus on SoB. |
| Interference on daily life of emotional wellbeing in past week | NA | NA |
SoB: shortness of breath; ADL: activity of daily living; NA: not applicable.