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Table 2 Patient reported outcome measures in the I-FILE study

From: Study protocol of an international patient-led registry in patients with pulmonary fibrosis using online home monitoring: I-FILE

 

Description

Number of items and scoring

MCID

Reference

K-BILD

Self-completed health status questionnaire with 3 domains: breathlessness and activities, psychological, and chest symptoms

15 items

Scores range from 0 to 100, with higher scores corresponding with better HRQOL

K-BILD total: 3.9 points

[30, 31]

L-PF

Questionnaire consists of 2 modules. The impacts module evaluates impact on daily activities. The symptom module evaluates shortness of breath, cough, and fatigue

44 items (Symptoms module: 23 items, Impacts module: 21 items)

Scores range from 0 to 100, with higher scores indicating more impairment and lower HRQOL

L-PF Dyspnea: 6–7 points

L-PF Cough: 4–5 points

[32, 33]

EQ-5D-5L

Questionnaire with 5 domains; mobility, self-care, usual activities, pain/discomfort, and anxiety/depression, combined with a VAS on health status with a scale from 0 to 100

6 items

Higher score indicates better health status

EQ-5D-5L range: 0.0050–0.054 points

EQ-VAS range: 0.5–5.0 points

[34, 35]

VAS

Symptom scores on cough, dyspnea, fatigue, and general wellbeing

1 item per symptom

Scores range from 0 to 10, with higher scores on cough, dyspnea and fatigue reflecting more severe symptoms. Higher score on general wellbeing indicates better wellbeing

Not available

[19]

LCQ

Questionnaire on chronic cough

19 items

The overall score ranges from 3 to 21, with a higher score indicating a better cough-related health status

1.3 points

(IPF)

[36]

FAS

Self-administered questionnaire about fatigue

10 items

The score ranges from 5 to 50 points, with a score of ≥ 22 points as cut-off for fatigue

4 points or 10% change (sarcoidosis)

[37, 38]

WPAI:GH

Questionnaire assessing impairment and productivity

6 items

Outcomes are expressed as impairment percentages, with higher numbers indicating greater impairment and less productivity

Not available

[39]

GRoC

Global rating of change with regards to general well-being

1 item

15-point self-report scale (from − 7 to 7). Higher score indicates a better health condition compared to the previous study visit

5 points

[40]

  1. K-BILD King’s brief Interstitial Lung Disease Health Status, L-PF the Living with Pulmonary Fibrosis, EQ-5D-5L The EuroQol five dimensions 5-level, VAS Visual Analogue Scale, LCQ Leicester Cough Questionnaire, FAS Fatigue Assessment Scale, WPAI:GH Work Productivity and Activity Impairment Questionnaire: General Health, GRoC The Global Rating of Change Scale