Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases.
Interstitial lung diseases (ILD), including those related to connective tissue disease (CTD), and idiopathic pulmonary fibrosis (IPF) carry high morbidity and mortality. Great efforts are under way to develop and investigate meaningful treatments in the context of clinical trials. However, efforts have been challenged by a lack of validated outcome measures and by inconsistent use of measures in clinical trials. Lack of consensus has fragmented effective use of strategies in CTD-ILD and IPF, with a history of resultant difficulties in obtaining agency approval of treatment interventions. Until recently, the patient perspective to determine domains and outcome measures in CTD-ILD and IPF had never been applied. Efforts described here demonstrate unequivocally the value and influence of patient involvement on core set development. Regarding CTD-ILD, this is the first OMERACT working group to directly address a manifestation/comorbidity of a rheumatic disease (ILD) as well as a disease not considered rheumatic (IPF). The OMERACT 11 proceedings of the CTD-ILD Working Group describe the forward and lateral process to include both the medical and patient perspectives in the urgently needed identification of a core set of preliminary domains and outcome measures in CTD-ILD and IPF.
From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA.
Lesley Ann
LA
Saketkoo
Shikha
S
Mittoo
Sid
S
Frankel
Daphne
D
LeSage
Catherine
C
Sarver
Kristine
K
Phillips
Vibeke
V
Strand
Eric L
EL
Matteson
D003240:Connective Tissue Diseases / Q000175:diagnosis* / Q000628:therapy*; D003245:Consensus Statements as Topic; D003697:Delphi Technique; D019468:Disease Management; D017144:Focus Groups; D006282:Health Personnel; D006801:Humans; D033183:Interdisciplinary Communication; D017563:Lung Diseases, Interstitial / Q000175:diagnosis* / Q000628:therapy*; D008297:Male; D017060:Patient Satisfaction; D011788:Quality of Life; D016032:Randomized Controlled Trials as Topic; D012720:Severity of Illness Index; D016896:Treatment Outcome
CONNECTIVE TISSUE DISEASE; INTERSTITIAL LUNG DISEASE; OUTCOME AND PROCESS ASSESSMENT; PATIENT PERSPECTIVE; RHEUMATOID ARTHRITIS; SYSTEMIC SCLEROSIS