Semin Respir Crit Care Med 2017; 38(04): 546-558
DOI: 10.1055/s-0037-1602589
Review Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Quality of Life in Sarcoidosis

Marc A. Judson
1   Division of Pulmonary and Critical Care Medicine, Department of Medicine, Albany Medical College, Albany, New York
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Publikationsverlauf

Publikationsdatum:
27. Juli 2017 (online)

Abstract

Health-related quality of life (HRQL) is an important aspect of patient evaluation. HRQL is particularly important in sarcoidosis, where treatment decisions are often based on HRQL impairment. HRQL assessment in sarcoidosis must take into account not only the direct effects of the disease but also the disease's psychosocial and emotional impact as well as the potential toxicity of therapy. Patient-reported outcomes (PROs) have been used to assess HRQL in sarcoidosis cohorts. Recent HRQL PROs have been developed that are sarcoidosis-specific and have adequate resolution to be used for monitoring individual patients potentially. In this article, the approach to HRQL assessment in sarcoidosis is discussed. This article focuses on the general approach to HRQL assessment, specific sarcoidosis issues concerning HRQL assessment, the construction of HRQL PROs, and their application in sarcoidosis. Several HRQL issues in sarcoidosis will be specifically highlighted, including parasarcoidosis syndromes, sarcoidosis-induced fatigue, and the impact of corticosteroid therapy.

 
  • References

  • 1 Cella DF, Bonomi AE. Measuring quality of life: 1995 update. Oncology (Williston Park) 1995; 9 (11, Suppl): 47-60
  • 2 Verghese A. Culture shock--patient as icon, icon as patient. N Engl J Med 2008; 359 (26) 2748-2751
  • 3 Judson MA. Quality of life assessment in sarcoidosis. Clin Chest Med 2015; 36 (04) 739-750
  • 4 Cox CE, Donohue JF, Brown CD, Kataria YP, Judson MA. Health-related quality of life of persons with sarcoidosis. Chest 2004; 125 (03) 997-1004
  • 5 Swigris JJ, Olson AL, Huie TJ. , et al. Sarcoidosis-related mortality in the United States from 1988 to 2007. Am J Respir Crit Care Med 2011; 183 (11) 1524-1530
  • 6 Rømer FK. Presentation of sarcoidosis and outcome of pulmonary changes. Dan Med Bull 1982; 29 (01) 27-32
  • 7 Judson MA, Boan AD, Lackland DT. The clinical course of sarcoidosis: presentation, diagnosis, and treatment in a large white and black cohort in the United States. Sarcoidosis Vasc Diffuse Lung Dis 2012; 29 (02) 119-127
  • 8 Judson MA. The clinical features of sarcoidosis: a comprehensive review. Clin Rev Allergy Immunol 2015; 49 (01) 63-78
  • 9 Baydur A, Alsalek M, Louie SG, Sharma OP. Respiratory muscle strength, lung function, and dyspnea in patients with sarcoidosis. Chest 2001; 120 (01) 102-108
  • 10 Cox CE, Donohue JF, Brown CD, Kataria YP, Judson MA. The Sarcoidosis Health Questionnaire: a new measure of health-related quality of life. Am J Respir Crit Care Med 2003; 168 (03) 323-329
  • 11 Baughman RP, Nunes H, Sweiss NJ, Lower EE. Established and experimental medical therapy of pulmonary sarcoidosis. Eur Respir J 2013; 41 (06) 1424-1438
  • 12 Judson MA. Corticosteroids in sarcoidosis. Rheum Dis Clin North Am 2016; 42 (01) 119-135 , ix
  • 13 Judson MA, Chaudhry H, Louis A, Lee K, Yucel R. The effect of corticosteroids on quality of life in a sarcoidosis clinic: the results of a propensity analysis. Respir Med 2015; 109 (04) 526-531
  • 14 Judson MA. The three tiers of screening for sarcoidosis organ involvement. Respir Med 2016; 113: 42-49
  • 15 Drent M, Wirnsberger RM, de Vries J, van Dieijen-Visser MP, Wouters EF, Schols AM. Association of fatigue with an acute phase response in sarcoidosis. Eur Respir J 1999; 13 (04) 718-722
  • 16 Tavee J, Culver D. Sarcoidosis and small-fiber neuropathy. Curr Pain Headache Rep 2011; 15 (03) 201-206
  • 17 Wanat KA, Rosenbach M. Cutaneous sarcoidosis. Clin Chest Med 2015; 36 (04) 685-702
  • 18 De Vries J, Lower EE, Drent M. Quality of life in sarcoidosis: assessment and management. Semin Respir Crit Care Med 2010; 31 (04) 485-493
  • 19 Hoitsma E, De Vries J, van Santen-Hoeufft M, Faber CG, Drent M. Impact of pain in a Dutch sarcoidosis patient population. Sarcoidosis Vasc Diffuse Lung Dis 2003; 20 (01) 33-39
  • 20 Elfferich MD, Nelemans PJ, Ponds RW, De Vries J, Wijnen PA, Drent M. Everyday cognitive failure in sarcoidosis: the prevalence and the effect of anti-TNF-alpha treatment. Respiration 2010; 80 (03) 212-219
  • 21 Adams JS, Gacad MA. Characterization of 1 alpha-hydroxylation of vitamin D3 sterols by cultured alveolar macrophages from patients with sarcoidosis. J Exp Med 1985; 161 (04) 755-765
  • 22 Patrick DL, Burke LB, Powers JH. , et al. Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value Health 2007; 10 (Suppl. 02) S125-S137
  • 23 U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes 2006; 4: 79
  • 24 Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ. The routine use of patient reported outcome measures in healthcare settings. BMJ 2010; 340: c186
  • 25 Eton DT, Shevrin DH, Beaumont J, Victorson D, Cella D. Constructing a conceptual framework of patient-reported outcomes for metastatic hormone-refractory prostate cancer. Value Health 2010; 13 (05) 613-623
  • 26 Victorson DE, Cella D, Grund H, Judson MA. A conceptual model of health-related quality of life in sarcoidosis. Qual Life Res 2014; 23 (01) 89-101
  • 27 Donatti C, Wild D, Hareendran A. The use of conceptual models, conceptual frameworks and endpoint models to support label claims of treatment benefit using patient reported outcomes. ISPOR Connections. 2008 ;14(2)
  • 28 Tavakol M, Dennick R. Making sense of Cronbach's alpha. Int J Med Educ 2011; 2: 53-55
  • 29 Jaeschke R, Singer J, Guyatt GH. Measurement of health status. Ascertaining the minimal clinically important difference. Control Clin Trials 1989; 10 (04) 407-415
  • 30 Basagaña X, Barrera-Gómez J, Benet M, Antó JM, Garcia-Aymerich J. A framework for multiple imputation in cluster analysis. Am J Epidemiol 2013; 177 (07) 718-725
  • 31 Hagell P, Hedin PJ, Meads DM, Nyberg L, McKenna SP. Effects of method of translation of patient-reported health outcome questionnaires: a randomized study of the translation of the Rheumatoid Arthritis Quality of Life (RAQoL) Instrument for Sweden. Value Health 2010; 13 (04) 424-430
  • 32 Eremenco SL, Cella D, Arnold BJ. A comprehensive method for the translation and cross-cultural validation of health status questionnaires. Eval Health Prof 2005; 28 (02) 212-232
  • 33 Victorson DE, Cella D, Judson MA. Quality of life evaluation in sarcoidosis: current status and future directions. Curr Opin Pulm Med 2008; 14 (05) 470-477
  • 34 Cella D, Nowinski CJ. Measuring quality of life in chronic illness: the functional assessment of chronic illness therapy measurement system. Arch Phys Med Rehabil 2002; 83 (12) (Suppl. 02) S10-S17
  • 35 Ware Jr JE, Bjorner JB, Kosinski M. Practical implications of item response theory and computerized adaptive testing: a brief summary of ongoing studies of widely used headache impact scales. Med Care 2000; 38 (9, Suppl): II73-II82
  • 36 McHorney CA. Generic health measurement: past accomplishments and a measurement paradigm for the 21st century. Ann Intern Med 1997; 127 (8 Pt 2): 743-750
  • 37 Patel AS, Siegert RJ, Creamer D. , et al. The development and validation of the King's Sarcoidosis Questionnaire for the assessment of health status. Thorax 2013; 68 (01) 57-65
  • 38 Judson MA, Mack M, Beaumont JL, Watt R, Barnathan ES, Victorson DE. Validation and important differences for the Sarcoidosis Assessment Tool. A new patient-reported outcome measure. Am J Respir Crit Care Med 2015; 191 (07) 786-795
  • 39 Drent M, Marcellis R, Lenssen A, De Vries J. Association between physical functions and quality of life in sarcoidosis. Sarcoidosis Vasc Diffuse Lung Dis 2014; 31 (02) 117-128
  • 40 Alilović M, Peros-Golubicić T, Radosević-Vidacek B. , et al. WHOQOL-bREF questionnaire as a measure of quality of life in sarcoidosis. Coll Antropol 2013; 37 (03) 701-706
  • 41 Antoniou KM, Tzanakis N, Tzouvelekis A. , et al. Quality of life in patients with active sarcoidosis in Greece. Eur J Intern Med 2006; 17 (06) 421-426
  • 42 Brancaleone P, Perez T, Robin S, Neviere R, Wallaert B. Clinical impact of inspiratory muscle impairment in sarcoidosis. Sarcoidosis Vasc Diffuse Lung Dis 2004; 21 (03) 219-227
  • 43 Dudvarski-Ilić A, Mihailović-Vucinić V, Gvozdenović B, Zugić V, Milenković B, Ilić V. Health related quality of life regarding to gender in sarcoidosis. Coll Antropol 2009; 33 (03) 837-840
  • 44 De Vries J, Van Heck GL, Drent M. Gender differences in sarcoidosis: symptoms, quality of life, and medical consumption. Women Health 1999; 30 (02) 99-114
  • 45 Bourbonnais JM, Malaisamy S, Dalal BD, Samarakoon PC, Parikh SR, Samavati L. Distance saturation product predicts health-related quality of life among sarcoidosis patients. Health Qual Life Outcomes 2012; 10: 67
  • 46 Chren MM, Lasek RJ, Flocke SA, Zyzanski SJ. Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instrument for patients with skin diseases. Arch Dermatol 1997; 133 (11) 1433-1440
  • 47 Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)--a simple practical measure for routine clinical use. Clin Exp Dermatol 1994; 19 (03) 210-216
  • 48 Pariser RJ, Paul J, Hirano S, Torosky C, Smith M. A double-blind, randomized, placebo-controlled trial of adalimumab in the treatment of cutaneous sarcoidosis. J Am Acad Dermatol 2013; 68 (05) 765-773
  • 49 Baughman RP, Teirstein AS, Judson MA. , et al; Case Control Etiologic Study of Sarcoidosis (ACCESS) research group. Clinical characteristics of patients in a case control study of sarcoidosis. Am J Respir Crit Care Med 2001; 164 (10 Pt 1): 1885-1889
  • 50 Hamzeh N, Steckman DA, Sauer WH, Judson MA. Pathophysiology and clinical management of cardiac sarcoidosis. Nat Rev Cardiol 2015; 12 (05) 278-288
  • 51 Birnie DH, Sauer WH, Bogun F. , et al. HRS expert consensus statement on the diagnosis and management of arrhythmias associated with cardiac sarcoidosis. Heart Rhythm 2014; 11 (07) 1305-1323
  • 52 Gvozdenovic BS, Mihailovic-Vucinic V, Ilic-Dudvarski A, Zugic V, Judson MA. Differences in symptom severity and health status impairment between patients with pulmonary and pulmonary plus extrapulmonary sarcoidosis. Respir Med 2008; 102 (11) 1636-1642
  • 53 Drent M, Lower EE, De Vries J. Sarcoidosis-associated fatigue. Eur Respir J 2012; 40 (01) 255-263
  • 54 Lal C, Medarov BI, Judson MA. Interrelationship between sleep-disordered breathing and sarcoidosis. Chest 2015; 148 (04) 1105-1114
  • 55 Chang B, Steimel J, Moller DR. , et al. Depression in sarcoidosis. Am J Respir Crit Care Med 2001; 163 (02) 329-334
  • 56 Lower EE, Harman S, Baughman RP. Double-blind, randomized trial of dexmethylphenidate hydrochloride for the treatment of sarcoidosis-associated fatigue. Chest 2008; 133 (05) 1189-1195
  • 57 De Vries J, Drent M, Van Heck GL, Wouters EF. Quality of life in sarcoidosis: a comparison between members of a patient organisation and a random sample. Sarcoidosis Vasc Diffuse Lung Dis 1998; 15 (02) 183-188
  • 58 De Vries J, Michielsen H, Van Heck GL, Drent M. Measuring fatigue in sarcoidosis: the Fatigue Assessment Scale (FAS). Br J Health Psychol 2004; 9 (Pt 3): 279-291
  • 59 De Vries J, Rothkrantz-Kos S, van Dieijen-Visser MP, Drent M. The relationship between fatigue and clinical parameters in pulmonary sarcoidosis. Sarcoidosis Vasc Diffuse Lung Dis 2004; 21 (02) 127-136
  • 60 Hinz A, Fleischer M, Brähler E, Wirtz H, Bosse-Henck A. Fatigue in patients with sarcoidosis, compared with the general population. Gen Hosp Psychiatry 2011; 33 (05) 462-468
  • 61 de Kleijn WP, De Vries J, Lower EE, Elfferich MD, Baughman RP, Drent M. Fatigue in sarcoidosis: a systematic review. Curr Opin Pulm Med 2009; 15 (05) 499-506
  • 62 Kalkanis A, Yucel RM, Judson MA. The internal consistency of PRO fatigue instruments in sarcoidosis: superiority of the PFI over the FAS. Sarcoidosis Vasc Diffuse Lung Dis 2013; 30 (01) 60-64
  • 63 Strookappe B, De Vries J, Elfferich M, Kuijpers P, Knevel T, Drent M. Predictors of fatigue in sarcoidosis: The value of exercise testing. Respir Med 2016; 116: 49-54
  • 64 Zieleźnik K, Jastrzębski D, Ziora D. Fatigue in patients with inactive sarcoidosis does not correlate with lung ventilation ability or walking distance. Pilot study. Pneumonol Alergol Pol 2015; 83 (01) 14-22
  • 65 Jastrzębski D, Ziora D, Lubecki M. , et al. Fatigue in sarcoidosis and exercise tolerance, dyspnea, and quality of life. Adv Exp Med Biol 2015; 833: 31-36
  • 66 Aggarwal AN, Sahu KK, Gupta D. Fatigue and health-related quality of life in patients with pulmonary sarcoidosis treated by oral Corticosteroids. Sarcoidosis Vasc Diffuse Lung Dis 2016; 33 (02) 124-129
  • 67 Wagner MT, Marion SD, Judson MA. The effects of fatigue and treatment with methylphenidate on sustained attention in sarcoidosis. Sarcoidosis Vasc Diffuse Lung Dis 2005; 22 (03) 235
  • 68 Lower EE, Malhotra A, Surdulescu V, Baughman RP. Armodafinil for sarcoidosis-associated fatigue: a double-blind, placebo-controlled, crossover trial. J Pain Symptom Manage 2013; 45 (02) 159-169
  • 69 Marcellis R, Van der Veeke M, Mesters I. , et al. Does physical training reduce fatigue in sarcoidosis?. Sarcoidosis Vasc Diffuse Lung Dis 2015; 32 (01) 53-62
  • 70 Korenromp IH, Grutters JC, van den Bosch JM, Zanen P, Kavelaars A, Heijnen CJ. Reduced Th2 cytokine production by sarcoidosis patients in clinical remission with chronic fatigue. Brain Behav Immun 2011; 25 (07) 1498-1502
  • 71 Yeager H, Rossman MD, Baughman RP. , et al; ACCESS Research Group. Pulmonary and psychosocial findings at enrollment in the ACCESS study. Sarcoidosis Vasc Diffuse Lung Dis 2005; 22 (02) 147-153
  • 72 Drent M, Wirnsberger RM, Breteler MH, Kock LM, de Vries J, Wouters EF. Quality of life and depressive symptoms in patients suffering from sarcoidosis. Sarcoidosis Vasc Diffuse Lung Dis 1998; 15 (01) 59-66
  • 73 de Boer S, Kolbe J, Wilsher ML. The relationships among dyspnoea, health-related quality of life and psychological factors in sarcoidosis. Respirology 2014; 19 (07) 1019-1024
  • 74 Judson MA, Silvestri J, Hartung C, Byars T, Cox CE. The effect of thalidomide on corticosteroid-dependent pulmonary sarcoidosis. Sarcoidosis Vasc Diffuse Lung Dis 2006; 23 (01) 51-57
  • 75 Heij L, Niesters M, Swartjes M. , et al. Safety and efficacy of ARA 290 in sarcoidosis patients with symptoms of small fiber neuropathy: a randomized, double-blind pilot study. Mol Med 2012; 18: 1430-1436
  • 76 Wirnsberger RM, De Vries J, Jansen TL, Van Heck GL, Wouters EF, Drent M. Impairment of quality of life: rheumatoid arthritis versus sarcoidosis. Neth J Med 1999; 54 (03) 86-95
  • 77 Den Oudsten BL, Zijlstra WP, De Vries J. The minimal clinical important difference in the World Health Organization Quality of Life instrument--100. Support Care Cancer 2013; 21 (05) 1295-1301
  • 78 Michielsen HJ, Drent M, Peros-Golubicic T, De Vries J. Fatigue is associated with quality of life in sarcoidosis patients. Chest 2006; 130 (04) 989-994
  • 79 Marcellis RG, Lenssen AF, Elfferich MD. , et al. Exercise capacity, muscle strength and fatigue in sarcoidosis. Eur Respir J 2011; 38 (03) 628-634
  • 80 Baughman RP, Sparkman BK, Lower EE. Six-minute walk test and health status assessment in sarcoidosis. Chest 2007; 132 (01) 207-213
  • 81 Makambi KH, Williams CD, Taylor TR, Rosenberg L, Adams-Campbell LL. An assessment of the CES-D scale factor structure in black women: The Black Women's Health Study. Psychiatry Res 2009; 168 (02) 163-170