Article Figures & Data
Tables
- Table 1.
Results of cluster analysis of the 3-tiered healthcare professional Delphi process. Five domains each were identified for connective tissue disease–related interstitial lung disease (CTD-ILD) and idiopathic pulmonary fibrosis (IPF). Values are ratings on a 9-point scale.
Domain Name CTD-ILD median/mean IPF median/mean Dyspnea 8.0/7.8 8.0/8.1 Health-related quality of life 8.0/7.7 8.0/7.8 Lung imaging 9.0/8.3 9.0/8.3 Lung physiology/function 9.0/8.7 9.0/8.7 Survival 8.0/8.2 9.0/8.4 - Table 2.
Instruments yielded by cluster analysis and their corresponding domains, with median/mean scores reported. Values in square brackets signify items no longer considered relevant to that disease.
Domain Instruments CTD-ILD Median/Mean IPF Median/Mean Dyspnea Borg Dyspnea Index 7.0/6.9 7.0/7.0 Dyspnea 12 [7.0/6.6] 7.0/6.7 Medical Research Council (MRC) Breathlessness (Chronic Dyspnea) 7.0/7.0 7.0/7.1 Scale or the Modified MRC Dyspnea Scale Borg Dyspnea Index, pre- and post-exercise 7.0/7.0 [7.0/7.1] Health-related quality of life (HRQOL) Medical Outcome Study Short Form-36 Questionnaire 7.0/7.3 7.0/7.3 St. George’s Dyspnea Respiratory Questionnaire [7.0/6.6] 7.0/6.8 Visual analog scale of patient assessment of disease activity 7.0/6.8 7.0/6.7 Ability to carry out activities of daily living 7.0/6.8 Lost Tier 1 Health Assessment Questionnaire Disability Index 7.0/7.0 Lost Tier 1 Lung imaging Extent of honeycombing on HRCT 7.0/7.1 8.0/7.4 Extent of reticulation on HRCT [7.0/6.9] 7.0/6.9 Extent of ground glass opacities on HRCT 7.0/7.2 [7.0/6.7] Overall extent of interstitial lung disease on HRCT 8.0/7.7 8.0/7.7 Lung physiology/function Supplemental oxygen requirement 7.0/7.3 8.0/7.5 Forced vital capacity on spirometry 8.0/8.3 9.0/8.3 Diffusion capacity of lung for carbon monoxide 8.0/7.9 8.0/7.9 6-MWT with maximal desaturation on pulse oximetry 7.0/6.8 7.0/7.0 6-MWT for distance [7.0/6.5] 7.0/7.0 Survival Time to decline in forced vital capacity 7.0/7.3 7.0/7.0 Progression-free survival 8.0/8.2 8.0/8.3 Time to death 7.0/7.1 8.0/7.3 -
6-MWT: 6-minute walk test; CTD-ILD: connective tissue disease-related interstitial lung disease; IPF: idiopathic pulmonary fibrosis; HRCT: high-resolution computed tomography.
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- Table 3.
Domains ratified during OMERACT 11 proceedings. Forging consensus between patients and physicians with special considerations.
Domains from Combined Investigations Special Considerations Dyspnea Unexpected language and contextual factors Consider need for disease-specific instrument development Cough Pervasive effect on dyspnea and HRQOL Core set inclusion received 100% endorsement Consider need for disease-specific instrument development Health-related quality of life (HRQOL; also captures patient global assessment) Consider need for disease-specific instrument development HRQOL is affected by uncertainty surrounding disease outcome HRQOL may be affected by physician-patient communication Lung physiology/function Important to patients and physicians Patients are anxious about performance-related results (re: poor result of spirometry because of “effort” or a “bad day”) Lung imaging Patients and physicians care about this domain Survival Important to both groups Patients want to communicate about prognosis and handling episodic exacerbations Medications Important to both groups Incremental increase/decrease may be useful as a disease activity marker but depends on targeted therapy
