Display Settings:

Format

Send to:

Choose Destination
See comment in PubMed Commons below
J Rheumatol. 2014 Apr;41(4):792-8. doi: 10.3899/jrheum.131251. Epub 2014 Feb 1.

Reconciling healthcare professional and patient perspectives in the development of disease activity and response criteria in connective tissue disease-related interstitial lung diseases.

Collaborators (293)

Baughman RP, Brown KK, Christmann RB, Dellaripa P, Denton CP, Distler O, Fischer A, Flaherty K, Huscher D, Khanna D, Kowal-Bielecka O, Merkel PA, Oddis CV, Pittrow D, Sandorfi N, Seibold JR, Swigris J, Wells A, Antoniou K, Castelino FV, Christopher-Stine L, Collard HR, Cottin V, Danoff S, Hedlund R, Highland KB, Hummers L, Lynch DA, Kim DS, Ryu JH, Christopher-Stine L, Miller FW, Nichols K, Proudman SM, Richeldi L, Shah AA, van den Assum P, Aggarwal R, Ainslie G, Alkassab F, Allanore Y, Anderson ME, Andonopoulos AP, Antin-Ozerkis D, Antoniou K, Arrobas A, Ascherman DP, Assassi S, Baron M, Bathon JM, Baughman RP, Behr J, Beretta L, Bingham CO, Binnie M, Birring SS, Boin F, Bongartz T, Bourdin A, Bouros D, Brasington R, Bresser P, Brown KK, Buch MH, Burge PS, Carmona L, Castelino FV, Carreira PE, Carvalho CR, Catoggio LJ, Chan KM, Chapman J, Chatterjee S, Christmann RB, Christopher-Stine L, Chua F, Chung L, Conron M, Corte T, Cosgrove G, Costabel U, Cottin V, Cox G, Crestani B, Crofford LJ, Csuka ME, Curbelo P, Czirják L, Daniil Z, Danoff S, D'Arsigny CL, Davis GS, de Andrade JA, Dellaripa PF, De Vuyst P, Dempsey OJ, Denton CP, Derk CT, Distler J, Distler O, Dixon WG, Downey G, Doyle MK, Drent M, Durairaj L, Emery P, Espinoza LR, Farge D, Fathi M, Fell CD, Fessler BJ, Fischer A, Fitzgerald JE, Flaherty KR, Foeldvari I, Fox GA, Frech TM, Freitas S, Furst DE, Gabrielli A, García-Vicuña R, Georgiev OB, Gerbino A, Gillisen A, Gladman DD, Glassberg M, Gochuico BR, Gogali A, Goh NS, Goldberg A, Goldberg HJ, Gourley MF, Griffing L, Grutters JC, Gunnarsson R, Hachulla E, Hall FC, Harari S, Herrick AL, Herzog EL, Hesselstrand R, Highland K, Hirani N, Hodgson U, Hollingsworth HM, Homer RJ, Hoyles RK, Hsu VM, Hubbard RB, Hummers L, Hunzelmann N, Huscher D, Isasi ME, Isasi ES, Jacobsen S, Jimenez SA, Johnson SR, Jones CH, Kahaleh B, Kairalla RA, Kalluri M, Kalra S, Kaner RJ, Khanna D, Kim DS, Kinder BW, Kiter G, Klingsberg RC, Kokosi M, Kolb MR, Kowal-Bielecka OM, Kur-Zalewska J, Kuwana M, Lake FR, Lally EV, Lasky JA, Laurindo IM, Able L, Lee P, Leonard CT, Lien DC, Limper AH, Liossis SN, Lohr KM, Loyd JE, Lundberg IE, Mageto YN, Maher TM, Mahmud TH, Manganas H, Marie I, Marras TK, Martinez JA, Martinez FJ, Mathieu A, Matucci-Cerinic M, Mayes MD, McKown KM, Medsger TA, Meehan RT, Mendes AC, Merkel PA, Meyer KC, Millar AB, Miller FW, Moğulkoc N, Molitor JA, Morais A, Mouthon L, Müller V, Müller-Quernheim J, Nadashkevich O, Nador R, Nash P, Nathan SD, Navarro C, Neves S, Noth I, Nunes H, Oddis CV, Olson AL, Opitz CF, Padilla M, Pappas D, Parfrey H, Pego-Reigosa JM, Pereira CA, Perez R, Phillips K, Pittrow D, Pope JE, Porter JC, Proudman SM, Renzoni EA, Richeldi L, Riemekasten G, Riley DJ, Rischmueller M, Rodriguez-Reyna TS, Rojas-Serrano J, Roman J, Rosen GD, Rossman M, Rothfield N, Ryu JH, Sahn SA, Sandorfi N, Sanduzzi A, Scholand MB, Seibold JR, Selman M, Senécal JL, Seo P, Shah A, Silver RM, Solomon JJ, Steen V, Stevens W, Strange C, Sussman R, Sutton ED, Sweiss NJ, Swigris J, Tornling G, Tzelepis GE, Undurraga A, Vacca A, Vancheri C, Varga J, Veale DJ, Volkov S, Walker UA, Wells AU, Wencel M, Wesselius LJ, Wickremasinghe M, Wilcox P, Wilsher ML, Wollheim FA, Wuyts WA, Yung G, Zanon P, Zappala CJ, Groshong SD, Leslie KO, Myers JL, Padera RF, Desai SR, Goldin J, Kazerooni EA, Klein JS, Lynch DA, Keen KJ.

Author information

  • 1From 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.

Abstract

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.

KEYWORDS:

CONNECTIVE TISSUE DISEASE; INTERSTITIAL LUNG DISEASE; OUTCOME AND PROCESS ASSESSMENT; PATIENT PERSPECTIVE; RHEUMATOID ARTHRITIS; SYSTEMIC SCLEROSIS

PMID:
24488412
[PubMed - in process]
PubMed Commons home

PubMed Commons

0 comments
How to join PubMed Commons

    Supplemental Content

    Full text links

    Icon for HighWire
    Loading ...
    Write to the Help Desk