Understanding and optimizing health-related quality of life and physical functional capacity in idiopathic pulmonary fibrosis

Amy L Olson, Kevin K Brown, Jeffrey J Swigris, Amy L Olson, Kevin K Brown, Jeffrey J Swigris

Abstract

Idiopathic pulmonary fibrosis (IPF) is a relentlessly progressive pulmonary disease characterized by the insidious onset of shortness of breath due to parenchymal scarring. As IPF progresses, breathlessness worsens, physical functional capacity declines, and health-related quality of life (HRQL) - the impact of health or disease on a person's satisfaction with their overall station in life - deteriorates. These two inextricably linked variables - breathlessness and physical functional capacity - are strong drivers of HRQL. With the emergence of new and prospective therapies for IPF, it is more important than ever to be able to accurately and reliably assess how IPF patients feel and function. Doing so will promote the development of novel interventions to target impairments in these areas and ensure that the field is capable of assessing the effect of therapeutics interventions on these critically important patient-centered outcomes.

Keywords: functional status; health-related quality of life; idiopathic pulmonary fibrosis.

References

    1. Raghu G, Collard H, Egan JJ, et al. An official ATS/ERJ/JRS/ALAT statement: idiopathic pulmonary fibrosis: evidence-based guidelines for diagnosis and management. Am J Respir Crit Care Med. 2011;183(6):788–824.
    1. King TE, Jr, Williamson ZB, Castro-Bernardini S, et al. A phase 3 trial of pirfenidone in patients with idiopathic pulmonary fibrosis. N Engl J Med. 2014;370(22):2083–2092.
    1. Richeldi L, du Bois RM, Raghu G, et al. Efficacy and safety of nintedanib in idiopathic pulmonary fibrosis. N Engl J Med. 2014;370(22):2071–2082.
    1. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med. 1993;118(8):622–629.
    1. Belkin A, Swigris JJ. Health-related quality of life in idiopathic pulmonary fibrosis: where are we now? Curr Opin Pulm Med. 2013;19(5):474–479.
    1. Jones PW. Quality of life measurement for patients with diseases of the airways. Thorax. 1991;46(9):676–682.
    1. Ware JE, Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–483.
    1. McHorney C, Ware JE, Jr, Lu J, et al. The MOS 36-item Short Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care. 1994;32(1):40–66.
    1. Bousquet J, Knani J, Dhivert H, et al. Quality of life in asthma: I. Internal consistency and validity of the SF-36 questionnaire. Am J Respir Crit Care Med. 1994;149(2 Pt 1):371–375.
    1. Martinez TY, Pereira CAC, dos Santos ML, Ciconelli RM, Guimarães SM, Martinez JA. Evaluation of the short-form 36-item questionnaire to measure health related quality of life in patients with idiopathic pulmonary fibrosis. Chest. 2000;117(6):1627–1632.
    1. McHorney C, Ware JE, Jr, Raczek A. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31(3):247–263.
    1. Baddini Martinez JA, Martinez TY, Lovetro Galhardo FP, de Castro Pereira CA. Dyspnea scales as a measure of health-related quality of life in patients with idiopathic pulmonary fibrosis. Med Sci Monit. 2002;8(6):CR405–CR410.
    1. Ohno S, Nakazawa S, Kobayashi A, Bando M, Sugiyama Y. Reassessment of the classification of the severity in idiopathic pulmonary fibrosis using SF-36 questionnaire. Intern Med. 2005;44(3):196–199.
    1. Clark M, Cooper B, Singh S, Cooper M, Carr A, Hubbard R. A survey of nocturnal hypoxaemia and health related quality of life in patients with cryptogenic fibrosing alveolitis. Thorax. 2001;56(6):482–486.
    1. Tomika H, Imanaka K, Hashimoto K, Iwasaki H. Health-related quality of life with idiopathic pulmonary fibrosis: cross-sectional and longitudinal study. Intern Med. 2007;46(18):1533–1542.
    1. Swigris JJ, Brown KK, Behr J, et al. The SF-36 and SGRQ: validity and first look at minimum important difference in IPF. Respir Med. 2010;104(6):296–304.
    1. Jones PW, Quirk FH, Baveystock CM. The St George’s Respiratory Questionnaire. Respir Med. 1991;85(Suppl B):25–31.
    1. Swigris JJ, Esser D, Conoscenti CS, Brown KK. The psychometric properties of the St George’s Respiratory Questionnaire (SGRQ) in patients with idiopathic pulmonary fibrosis: a literature review. Health Qual Life Outcomes. 2014;12(2):124–127.
    1. De Vries J, Seebregts A, Drent M. Assessing health status and quality of life in idiopathic pulmonary fibrosis: which measure should be used? Respir Med. 2000;94(3):273–278.
    1. Nishiyama O, Taniguchi H, Kondoh Y, et al. Health-related quality of life in patients with idiopathic pulmonary fibrosis. What is the main contributing factor? Respir Med. 2005;99(2):408–414.
    1. Zimmermann CS, Carvalho CRF, Silveira KR, et al. Comparison of two questionnaires which measure the health related quality of life in idiopathic pulmonary fibrosis patients. Braz J Med Biol Res. 2007;40(2):179–187.
    1. Yorke J, Jones PW, Swigris JJ. Development and validity testing of an IPF-specific version of the St George’s Respiratory Questionnaire. Thorax. 2010;65(10):921–926.
    1. Verma G, Marras T, Chowdhury N, Singer L. Health-related quality of life and 6 minute walk distance in patients with idiopathic pulmonary fibrosis. Can Respir J. 2011;18(5):283–287.
    1. Peng S, Li Z, Kang J, Hou X. Cross-sectional and longitudinal construct validity of the Saint George’s Respiratory Questionnaire in patients with IPF. Respirology. 2008;13(6):871–879.
    1. Patel AS, Siegert RJ, Brignall K, et al. The development and validation of the King’s Brief Interstitial Lung Disease (K-BILD) health status questionnaire. Thorax. 2012;67(9):804–810.
    1. Patel AS, Siegert RJ, Keir GJ, et al. The minimal important difference of the King’s Brief Interstitial Lung Disease Questionnaire (K-BILD) and forced vital capacity in interstitial lung disease. Respir Med. 2013;107(9):1438–1443.
    1. Swigris JJ, Wilson SR, Green KE, Sprunger DB, Brown KK, Wamboldt FS. Development of the ATAQ-IPF: a tool to assess quality of life in IPF. Health Qual Life Outcomes. 2010;8:77.
    1. King TE, Jr, Behr J, Brown KK, et al. BUILD-1: a randomized placebo-controlled trial of bosentan in idiopathic pulmonary fibrosis. Am J Respir Crit Care Med. 2008;177(1):75–81.
    1. Nishiyama O, Kondoh Y, Kirmura T, et al. Effects of pulmonary rehabilitation in patients with idiopathic pulmonary fibrosis. Respirology. 2008;13(3):394–399.
    1. Holland AE, Hill CJ, Conron M, Munro P, McDonald CF. Short term improvement in exercise capacity and symptoms following exercise training in interstitial lung disease. Thorax. 2008;63(6):549–554.
    1. Kozu R, Senjyu H, Jenkins SC, Mukae H, Sakamoto N, Kohno S. Differences in response to pulmonary rehabilitation in idiopathic pulmonary fibrosis. Respiration. 2011;81(3):196–205.
    1. Swigris JJ, Fairclough DL, Morrison M, et al. Benefits of pulmonary rehabilitation in idiopathic pulmonary fibrosis. Respir Care. 2011;56(6):783–789.
    1. Dowman L, Hill CJ, Holland AE. Pulmonary rehabilitation for interstitial lung disease. Cochrane Database Syst Rev. 2014;10:CD006322.
    1. Ozalevli S, Karaali HK, Ilgin D, Ucan ES. Effect of home-based pulmonary rehabilitation in patients with idiopathic pulmonary fibrosis. Multidisciplinary Respir Med. 2010;5(1):31–37.
    1. Rammaert B, Leroy S, Cavestri B, Wallaert B, Grosbois JM. Effect of home-based pulmonary rehabilitation in idiopathic pulmonary fibrosis. Rev Mal Respir. 2009;26(3):275–282. French.
    1. Lindell KO, Olshansky E, Song MK, et al. Impact of a disease-management program on symptom burden and health-related quality of life in patients with idiopathic pulmonary fibrosis and their care partners. Heart Lung. 2010;39(4):304–313.
    1. Swigris JJ, Brown KK, Make BJ, Wamboldt FS. Pulmonary rehabilitation in idiopathic pulmonary fibrosis: a call for continued investigation. Respir Med. 2008;102(12):1675–1680.
    1. National Committee on Vital and Health Statistics Classifying and reporting functional status. 1998. [Accessed January 29, 2012]. Available from: .
    1. Cress ME, Buchner DM, Questad KA, Esselman PC, deLateur BJ, Schwartz RS. Continuous-scale physical functional performance in health older adults: a validation study. Arch Phys Med Rehabil. 1996;77(12):1243–1250.
    1. ATS Committee on Proficiency Standards for Clinical Pulmonary Function Laboratories. ATS statement: guidelines for the six-minute walk test. Am J Respir Crit Care Med. 2002;166(1):111–117.
    1. Ross RM, Murthy JN, Wollak ID, Jackson AS. The six minute walk test accurately estimates mean peak oxygen uptake. BMC Pulm Med. 2010;10:31.
    1. Flaherty KR, Andrei AC, Murray S, et al. Idiopathic pulmonary fibrosis: prognostic values of changes in physiology and six-minute walk test. Am J Respir Crit Care Med. 2006;174(7):803–809.
    1. du Bois RM, Weycker D, Albera C, et al. Six-minute-walk test in idiopathic pulmonary fibrosis: test validation and minimal clinically important difference. Am J Respir Crit Care Med. 2011;183(9):1231–1237.
    1. King TE, Albera C, Bradford WZ, et al. Effect of interferon gamma-1b on survival in patients with idiopathic pulmonary fibrosis (INSPIRE): a multicentre, randomised, placebo-controlled trial. Lancet. 2009;374(9685):222–228.
    1. Azuma A, Nukiwa T, Tsuboi E, et al. Double-blind, placebo controlled trial of pirfenidone in patients with idiopathic pulmonary fibrosis. Am J Respir Crit Care Med. 2005;171(9):1040–1047.
    1. Elpern EH, Stevens D, Kesten S. Variability in performance of the time walk test in pulmonary rehabilitation programs. Chest. 2000;118(1):98–105.
    1. Heresi GA, Dweik RA. Strengths and limitations of the six-minute-walk test: a model biomarker study in idiopathic pulmonary fibrosis [comment] Am J Respir Crit Care Med. 2011;183(9):1122–1124.
    1. Fastenau A, van Schayck OC, Gosselink R, Aretz KC, Muris JW. Discrepancy between functional exercise capacity and daily physical activity: a cross-sectional study in patients with mild to moderate COPD. Prim Care Respir J. 2013;22(4):425–430.
    1. Waschki B, Kirsten AM, Holz O, et al. Disease progression and changes in physical activity in patients with chronic obstructive pulmonary disease. Am J Respir Crit Care Med. 2015;192(3):295–306.
    1. Fried LP, Ettinger WH, Lind B, Newman AB, Gardin J. Physical disability in older adults: a physiologic approach. Cardiovascular Health Study Research Group. J Clin Epidemiol. 1994;47(7):747–760.
    1. Kozu R, Jenkins S, Senjyu H. Evaluation of activity limitation in patients with idiopathic pulmonary fibrosis grouped according to Medical Research Council Dyspnea Grade. Arch Phys Med Rehabil. 2014;95(5):950–955.
    1. Spector WD, Katz S, Murphy JB, Fulton JP. The hierarchical relationship between activities of daily living and instrumental activities of daily living. J Chronic Dis. 1987;40(6):481–489.
    1. Ando M, Mori A, Esaki H, et al. The effect of pulmonary rehabilitation in patients with post-tuberculosis lung disorder. Chest. 2003;123(6):1988–1995.
    1. American Thoracic Society, American College of Chest Physicians ATS/ACCP statement on cardiopulmonary exercise testing. Am J Respir Crit Care Med. 2003;167(2):211–277.
    1. Fell C, Liu LX, Motika C, et al. The prognostic value of cardiopulmonary exercise testing in idiopathic pulmonary fibrosis. Am J Respir Crit Care. 2009;179(5):402–407.
    1. Nakayama M, Bando M, Araki K, et al. Physical activity in patients with idiopathic pulmonary fibrosis. Respirology. 2015;20(4):640–646.
    1. Waschki B, Kirsten A, Holz O, et al. Physical activity is the strongest predictor of all-cause mortality in patients with COPD: a prospective cohort study. Chest. 2011;140(2):331–342.
    1. Olson AL, Swigris JJ, Belkin A, et al. Physical functional capacity in idiopathic pulmonary fibrosis: performance characteristics of the continuous-scale physical function performance test. Expert Rev Respir Med. 2015;9(3):361–367.
    1. Cress ME, Petrella JK, Moore TL, Schenkman ML. Continuous-scale physical functional performance test: validity, reliability, and sensitivity of data for the short version. Phys Ther. 2005;85(4):323–335.
    1. Cress ME, Buchner DM, Questad KA, Esselman PC, deLateur BJ, Schwartz RS. Exercise: effects on physical functional performance in independent older adults. J Gerontol A Biol Sci Med Sci. 1999;54(5):M242–M248.
    1. Brochu M, Savage P, Lee M, et al. Resistance training in older women with coronary heart disease: a randomized controlled trial. J Appl Physiol (1985) 2002;92(2):672–678.
    1. Hearty TM, Schlenkman ML, Kohrt WM, Cress ME. Continuous scale physical functional performance test: appropriateness for middle-aged adults for middle-aged adults with and without Parkinson’s disease. J Neurol Phys Ther. 2007;31(2):64–70.
    1. Gary RA, Cress ME, Higgins MK, Smith AL, Dunbar SB. A combined aerobic and resistance exercise program improves physical functional performance in patients with heart failure: a pilot study. J Cardiovasc Nurs. 2012;27(5):418–430.

Source: PubMed

3
Se inscrever