Literature DB >> 32455167

Patient-reported outcome measures in systemic sclerosis-related interstitial lung disease for clinical practice and clinical trials.

Lesley Ann Saketkoo1,2,3,4, Mary Beth Scholand5, Matthew R Lammi1,2,3, Anne-Marie Russell6,7.   

Abstract

Systemic sclerosis (SSc) is a progressive vasculopathic, fibrosing autoimmune condition, portending significant mortality; wherein interstitial lung disease (ILD) is the leading cause of death. Although lacking a definitive cure, therapeutics for (SSc-ILD) that stave progression exist with further promising primary and adjuvant compounds in development, as well as interventions to reduce symptom burden and increase quality of life. To date, there has been a significant but varied history related to systemic sclerosis-related interstitial lung disease trial design and endpoint designation. This is especially true of endpoints measuring patient-reported perceptions of efficacy and tolerability. This article describes the underpinnings and complexity of the science, methodology, and current state of patient-reported outcome measures used in (SSc-ILD) systemic sclerosis-related interstitial lung disease in clinical practice and trials.

Entities:  

Keywords:  Systemic sclerosis; cough; dyspnea; health-related quality of life; interstitial lung disease; outcomes; patient-reported; pulmonary fibrosis; scleroderma

Year:  2020        PMID: 32455167      PMCID: PMC7243660          DOI: 10.1177/2397198320904178

Source DB:  PubMed          Journal:  J Scleroderma Relat Disord        ISSN: 2397-1983


  98 in total

1.  Randomized, prospective, placebo-controlled trial of bosentan in interstitial lung disease secondary to systemic sclerosis.

Authors:  J R Seibold; C P Denton; D E Furst; L Guillevin; L J Rubin; A Wells; M Matucci Cerinic; G Riemekasten; P Emery; H Chadha-Boreham; P Charef; S Roux; C M Black
Journal:  Arthritis Rheum       Date:  2010-07

2.  Long-term reproducibility of Borg scale estimates of breathlessness during exercise.

Authors:  R C Wilson; P W Jones
Journal:  Clin Sci (Lond)       Date:  1991-04       Impact factor: 6.124

Review 3.  Qualitative Methods to Advance Care, Diagnosis, and Therapy in Rheumatic Diseases.

Authors:  Lesley Ann Saketkoo; John D Pauling
Journal:  Rheum Dis Clin North Am       Date:  2018-02-21       Impact factor: 2.670

4.  Can Patient-Reported Symptoms Be Used to Measure Disease Activity in Systemic Sclerosis?

Authors:  Laura Ross; Wendy Stevens; Michelle Wilson; Gemma Strickland; Jennifer Walker; Joanne Sahhar; Gene-Siew Ngian; Janet Roddy; Gabor Major; Susanna Proudman; Murray Baron; Mandana Nikpour
Journal:  Arthritis Care Res (Hoboken)       Date:  2020-10       Impact factor: 4.794

5.  Safety and efficacy of subcutaneous tocilizumab in adults with systemic sclerosis (faSScinate): a phase 2, randomised, controlled trial.

Authors:  Dinesh Khanna; Christopher P Denton; Angelika Jahreis; Jacob M van Laar; Tracy M Frech; Marina E Anderson; Murray Baron; Lorinda Chung; Gerhard Fierlbeck; Santhanam Lakshminarayanan; Yannick Allanore; Janet E Pope; Gabriela Riemekasten; Virginia Steen; Ulf Müller-Ladner; Robert Lafyatis; Giuseppina Stifano; Helen Spotswood; Haiyin Chen-Harris; Sebastian Dziadek; Alyssa Morimoto; Thierry Sornasse; Jeffrey Siegel; Daniel E Furst
Journal:  Lancet       Date:  2016-05-05       Impact factor: 79.321

6.  Development of a symptom specific health status measure for patients with chronic cough: Leicester Cough Questionnaire (LCQ).

Authors:  S S Birring; B Prudon; A J Carr; S J Singh; M D L Morgan; I D Pavord
Journal:  Thorax       Date:  2003-04       Impact factor: 9.139

Review 7.  Developing antitussives: the ideal clinical trial.

Authors:  Surinder S Birring
Journal:  Pulm Pharmacol Ther       Date:  2008-11-13       Impact factor: 3.410

8.  Patient Activation as a Pathway to Shared Decision-making for Adults with Diabetes or Cardiovascular Disease.

Authors:  Bing Ying Poon; Stephen M Shortell; Hector P Rodriguez
Journal:  J Gen Intern Med       Date:  2019-10-23       Impact factor: 5.128

9.  Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.

Authors:  Hareth Al-Janabi; Terry N Flynn; Joanna Coast
Journal:  Qual Life Res       Date:  2011-05-20       Impact factor: 4.147

10.  Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance.

Authors: 
Journal:  Health Qual Life Outcomes       Date:  2006-10-11       Impact factor: 3.186

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  7 in total

1.  Quality of life in SSc-ILD patients: Understanding the impact of the ILD and the needs of the SSc-ILD patients and their need for caregivers in France.

Authors:  Yannick Allanore; Joel Constans; Dominique Godard; Gerard de Pouvourville; Stephane Bouee; Viviane Jeanbat; Clement Teissier; Katell Le Lay; Julien Chollet; Eric Hachulla
Journal:  J Scleroderma Relat Disord       Date:  2021-06-21

Review 2.  Assessment of disease outcome measures in systemic sclerosis.

Authors:  Robert Lafyatis; Eleanor Valenzi
Journal:  Nat Rev Rheumatol       Date:  2022-07-20       Impact factor: 32.286

Review 3.  Exercise as a multi-modal disease-modifying medicine in systemic sclerosis: An introduction by The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis (G-FoRSS).

Authors:  Henrik Pettersson; Helene Alexanderson; Janet L Poole; Janos Varga; Malin Regardt; Anne-Marie Russell; Yasser Salam; Kelly Jensen; Jennifer Mansour; Tracy Frech; Carol Feghali-Bostwick; Cecília Varjú; Nancy Baldwin; Matty Heenan; Kim Fligelstone; Monica Holmner; Matthew R Lammi; Mary Beth Scholand; Lee Shapiro; Elizabeth R Volkmann; Lesley Ann Saketkoo
Journal:  Best Pract Res Clin Rheumatol       Date:  2021-07-01       Impact factor: 4.991

4.  Considerations for a combined index for limited cutaneous systemic sclerosis to support drug development and improve outcomes.

Authors:  Alain Lescoat; Susan L Murphy; David Roofeh; John D Pauling; Michael Hughes; Robert Sandler; François Zimmermann; Rachel Wessel; Whitney Townsend; Lorinda Chung; Christopher P Denton; Peter A Merkel; Virginia Steen; Yannick Allanore; Francesco Del Galdo; Dominique Godard; David Cella; Sue Farrington; Maya H Buch; Dinesh Khanna
Journal:  J Scleroderma Relat Disord       Date:  2020-10-05

5.  Impact of lung function decline on time to hospitalisation events in systemic sclerosis-associated interstitial lung disease (SSc-ILD): a joint model analysis.

Authors:  Michael Kreuter; Francesco Del Galdo; Corinna Miede; Dinesh Khanna; Wim A Wuyts; Laura K Hummers; Margarida Alves; Nils Schoof; Christian Stock; Yannick Allanore
Journal:  Arthritis Res Ther       Date:  2022-01-10       Impact factor: 5.156

Review 6.  Open questions on the management of targeted therapies for the treatment of systemic sclerosis-interstitial lung disease: results of a EUSTAR survey based on a systemic literature review.

Authors:  Corrado Campochiaro; Maria Grazia Lazzaroni; Cosimo Bruni; Elisabetta Zanatta; Giacomo De Luca; Marco Matucci-Cerinic
Journal:  Ther Adv Musculoskelet Dis       Date:  2022-08-22       Impact factor: 3.625

7.  Patient preferences for the treatment of systemic sclerosis-associated interstitial lung disease: a discrete choice experiment.

Authors:  Cosimo Bruni; Sebastian Heidenreich; Ashley Duenas; Anna-Maria Hoffmann-Vold; Armando Gabrielli; Yannick Allanore; Emmanuel Chatelus; Jörg H W Distler; Eric Hachulla; Vivien M Hsu; Nicolas Hunzelmann; Dinesh Khanna; Marie-Elise Truchetet; Ulrich A Walker; Margarida Alves; Nils Schoof; Lesley Ann Saketkoo; Oliver Distler
Journal:  Rheumatology (Oxford)       Date:  2022-10-06       Impact factor: 7.046

  7 in total

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