Download PDF
Semin Respir Crit Care Med 2010; 31(4): 485-493
DOI: 10.1055/s-0030-1262216
© Thieme Medical Publishers

Quality of Life in Sarcoidosis: Assessment and Management

Jolanda De Vries1 , 2 , 3 , Elyse E. Lower4 , Marjolein Drent3
  • 1CoRPS, Department of Medical Psychology and Neuropsychology, Tilburg University, Tilburg, The Netherlands
  • 2Department of Medical Psychology, St. Elisabeth Hospital, Tilburg, The Netherlands
  • 3Sarcoidosis Management Center, Maastricht University Medical Centre, Maastricht, The Netherlands
  • 4Department of Internal Medicine, University of Cincinnati Medical Center, Cincinnati Ohio
Further Information

Publication History

Publication Date:
27 July 2010 (online)

    Permissions and Reprints

ABSTRACT

This review focuses on current knowledge of the QOL (quality of life) and HS (health status) of sarcoidosis patients. The QOL and HS of sarcoidosis patients are impaired and symptoms are a cause of this impairment. Fatigue appears to be the major problem in sarcoidosis patients. QOL is a concept that concerns patients’ evaluation of their functioning in a wide range of domains, but always the physical, psychological, and social domain. HS concerns patients’ physical, psychological, and social functioning. There are a number of HS questionnaires and one QOL measure that have shown useful in sarcoidosis. In addition, there exists one sarcoidosis-specific HS measure. The main symptom of fatigue can be assessed reliably and valid with the Fatigue Assessment Scale.

The absence of objective parameters for experiencing impairment does not always mean that patients are healthy. Because what patients can handle is clearly decreased, the activities should be adapted accordingly.

Present studies are generally cross-sectional. There is a need for prospective follow-up studies assessing the natural course of patients’ disease in relation to symptoms and QOL.

KEYWORDS

Fatigue - sarcoidosis - quality of life - assessment - management

REFERENCES

  • 1 Iannuzzi M C, Rybicki B A, Teirstein A S. Sarcoidosis.  N Engl J Med. 2007;  357 2153-2165
    CrossrefPubMedGoogle Scholar
  • 2 Wirnsberger R M, de Vries J, Wouters E F, Drent M. Clinical presentation of sarcoidosis in the Netherlands an epidemiological study.  Neth J Med. 1998;  53 53-60
    CrossrefPubMedGoogle Scholar
  • 3 Drent M, Wirnsberger R M, Breteler M H, Kock L M, de Vries J, Wouters E F. Quality of life and depressive symptoms in patients suffering from sarcoidosis.  Sarcoidosis Vasc Diffuse Lung Dis. 1998;  15 59-66
    PubMedGoogle Scholar
  • 4 Wirnsberger R M, de Vries J, Breteler M H, van Heck G L, Wouters E F, Drent M. Evaluation of quality of life in sarcoidosis patients.  Respir Med. 1998;  92 750-756
    CrossrefPubMedGoogle Scholar
  • 5 De Vries J, Wirnsberger R M. Fatigue, quality of life, and health status in sarcoidosis.  European Respiratory Society Monograph. 2005;  32 92-104
    PubMedGoogle Scholar
  • 6 Michielsen H J, Peros-Golubicic T, Drent M, De Vries J. Relationship between symptoms and quality of life in a sarcoidosis population.  Respiration. 2007;  74 401-405
    CrossrefPubMedGoogle Scholar
  • 7 Elfferich M D, Nelemans P J, Ponds R W, De Vries J, Wijnen P A, Drent M. Everyday cognitive failure in sarcoidosis: the prevalence and the effect of anti-TNF-α treatment.  Respiration. 2010;  , Apr 29. [Epub ahead of print]
    PubMedGoogle Scholar
  • 8 Bradley C. Importance of differentiating health status from quality of life.  Lancet. 2001;  357 7-8
    CrossrefPubMedGoogle Scholar
  • 9 Curtis J R, Patrick D L. The assessment of health status among patients with COPD.  Eur Respir J Suppl. 2003;  41 36s-45s
    PubMedGoogle Scholar
  • 10 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;  94 273-278
    CrossrefPubMedGoogle Scholar
  • 11 Breek J C, de Vries J, van Heck G L, van Berge Henegouwen D P, Hamming J F. Assessment of disease impact in patients with intermittent claudication: discrepancy between health status and quality of life.  J Vasc Surg. 2005;  41 443-450
    CrossrefPubMedGoogle Scholar
  • 12 Testa M A. Methods and applications of quality-of-life measurement during antihypertensive therapy.  Curr Hypertens Rep. 2000;  2 530-537
    CrossrefPubMedGoogle Scholar
  • 13 Montazeri A, Milroy R, Gillis C R, McEwen J. Quality of life: perception of lung cancer patients.  Eur J Cancer. 1996;  32A 2284-2289
    PubMedGoogle Scholar
  • 14 World Health Organization .Facet Definition and Questions: Field Trial WHOQOL-100. Geneva; WHO 1995
    PubMedGoogle Scholar
  • 15 The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization.  Soc Sci Med. 1995;  41 1403-1409
    CrossrefPubMedGoogle Scholar
  • 16 Endicott J, Nee J, Harrison W, Blumenthal R. Quality of Life Enjoyment and Satisfaction Questionnaire: a new measure.  Psychopharmacol Bull. 1993;  29 321-326
    PubMedGoogle Scholar
  • 17 Ritsner M, Kurs R, Kostizky H, Ponizovsky A, Modai I. Subjective quality of life in severely mentally ill patients: a comparison of two instruments.  Qual Life Res. 2002;  11 553-561
    CrossrefPubMedGoogle Scholar
  • 18 Guyatt G H, Berman L B, Townsend M, Pugsley S O, Chambers L W. A measure of quality of life for clinical trials in chronic lung disease.  Thorax. 1987;  42 773-778
    CrossrefPubMedGoogle Scholar
  • 19 Guyatt G H, Townsend M, Keller J, Singer J, Nogradi S. Measuring functional status in chronic lung disease: conclusions from a randomized control trial.  Respir Med. 1989;  83 293-297
    CrossrefPubMedGoogle Scholar
  • 20 Wijkstra P J, TenVergert E M, Van Altena R et al.. Reliability and validity of the chronic respiratory questionnaire (CRQ).  Thorax. 1994;  49 465-467
    CrossrefPubMedGoogle Scholar
  • 21 Chang J A, Curtis J R, Patrick D L, Raghu G. Assessment of health-related quality of life in patients with interstitial lung disease.  Chest. 1999;  116 1175-1182
    CrossrefPubMedGoogle Scholar
  • 22 Ware J E, Snow K K, Kosinski M et al.. SF-36 Health Survey: Manual and Interpretation Guide. Boston; Quality Metric 1993
    PubMedGoogle Scholar
  • 23 Bowling A. Measuring Disease: A Review of Disease-Specific Quality of Life Measurement Scales. Buckingham; Open University Press 1995
    PubMedGoogle Scholar
  • 24 Cox C E, Donohue J F, Brown C D, Kataria Y P, Judson M A. The Sarcoidosis Health Questionnaire: a new measure of health-related quality of life.  Am J Respir Crit Care Med. 2003;  168 323-329
    CrossrefPubMedGoogle Scholar
  • 25 Bergner M, Bobbitt R A, Carter W B, Gilson B S. The Sickness Impact Profile: development and final revision of a health status measure.  Med Care. 1981;  19 787-805
    CrossrefPubMedGoogle Scholar
  • 26 Jones P W, Quirk F H, Baveystock C M. The St George's Respiratory Questionnaire.  Respir Med. 1991;  85(Suppl B) 25-31 discussion 33-37
    CrossrefPubMedGoogle Scholar
  • 27 Jones P W, Bosh T K. Quality of life changes in COPD patients treated with salmeterol.  Am J Respir Crit Care Med. 1997;  155 1283-1289
    PubMedGoogle Scholar
  • 28 Jones P W. Nedocromil Sodium Quality of Life Study Group . Quality of life, symptoms and pulmonary function in asthma: long-term treatment with nedocromil sodium examined in a controlled multicentre trial.  Eur Respir J. 1994;  7 55-62
    CrossrefPubMedGoogle Scholar
  • 29 Jones P W, Quirk F H, Baveystock C M, Littlejohns P. A self-complete measure of health status for chronic airflow limitation. The St. George’s Respiratory Questionnaire.  Am Rev Respir Dis. 1992;  145 1321-1327
    CrossrefPubMedGoogle Scholar
  • 30 Cox C E, Donohue J F, Brown C D, Kataria Y P, Judson M A. Health-related quality of life of persons with sarcoidosis.  Chest. 2004;  125 997-1004
    CrossrefPubMedGoogle Scholar
  • 31 Wirnsberger R M, De Vries J, Jansen T L, Van Heck G L, Wouters E F, Drent M. Impairment of quality of life: rheumatoid arthritis versus sarcoidosis.  Neth J Med. 1999;  54 86-95
    CrossrefPubMedGoogle Scholar
  • 32 Antoniou K M, Tzanakis N, Tzouvelekis A et al.. Quality of life in patients with active sarcoidosis in Greece.  Eur J Intern Med. 2006;  17 421-426
    CrossrefPubMedGoogle Scholar
  • 33 Michielsen H J, De Vries J, Drent M, Peros-Golubicic T. Psychometric qualities of the Fatigue Assessment Scale in Croatian sarcoidosis patients.  Sarcoidosis Vasc Diffuse Lung Dis. 2005;  22 133-138
    PubMedGoogle Scholar
  • 34 De Vries J, Van Heck G L, Drent M. Gender differences in sarcoidosis: symptoms, quality of life, and medical consumption.  Women Health. 1999;  30 99-114
    PubMedGoogle Scholar
  • 35 Gvozdenovic B S, Mihailovic-Vucinic V, Ilic-Dudvarski A, Zugic V, Judson M A. Differences in symptom severity and health status impairment between patients with pulmonary and pulmonary plus extrapulmonary sarcoidosis.  Respir Med. 2008;  102 1636-1642
    CrossrefPubMedGoogle Scholar
  • 36 Goracci A, Fagiolini A, Martinucci M et al.. Quality of life, anxiety and depression in sarcoidosis.  Gen Hosp Psychiatry. 2008;  30 441-445
    CrossrefPubMedGoogle Scholar
  • 37 Michielsen H J, Drent M, Peros-Golubicic T, De Vries J. Fatigue is associated with quality of life in sarcoidosis patients.  Chest. 2006;  130 989-994
    CrossrefPubMedGoogle Scholar
  • 38 De Vries J, Drent M, Van Heck G L, Wouters E F. Quality of life in sarcoidosis: a comparison between members of a patient organisation and a random sample.  Sarcoidosis Vasc Diffuse Lung Dis. 1998;  15 183-188
    PubMedGoogle Scholar
  • 39 Baughman R P, Sparkman B K, Lower E E. Six-minute walk test and health status assessment in sarcoidosis.  Chest. 2007;  132 207-213
    CrossrefPubMedGoogle Scholar
  • 40 Wirnsberger R M, Drent M, Hekelaar N et al.. Relationship between respiratory muscle function and quality of life in sarcoidosis.  Eur Respir J. 1997;  10 1450-1455
    CrossrefPubMedGoogle Scholar
  • 41 Spruit M A, Thomeer M J, Gosselink R et al.. Skeletal muscle weakness in patients with sarcoidosis and its relationship with exercise intolerance and reduced health status.  Thorax. 2005;  60 32-38
    CrossrefPubMedGoogle Scholar
  • 42 Yeager H, Rossman M D, Baughman R P ACCESS Research Group et al. Pulmonary and psychosocial findings at enrollment in the ACCESS study.  Sarcoidosis Vasc Diffuse Lung Dis. 2005;  22 147-153
    PubMedGoogle Scholar
  • 43 Baughman R P, Iannuzzi M C, Lower E E et al.. Use of fluticasone in acute symptomatic pulmonary sarcoidosis.  Sarcoidosis Vasc Diffuse Lung Dis. 2002;  19 198-204
    PubMedGoogle Scholar
  • 44 de Kleijn W PE, Elfferich M DP, De Vries J et al.. Fatigue in sarcoidosis: American versus Dutch patients.  Sarcoidosis Vasc Diffuse Lung Dis. 2009;  26 92-97
    PubMedGoogle Scholar
  • 45 de Kleijn W P, De Vries J, Lower E E, Elfferich M D, Baughman R P, Drent M. Fatigue in sarcoidosis: a systematic review.  Curr Opin Pulm Med. 2009;  15 499-506
    CrossrefPubMedGoogle Scholar
  • 46 Afari N, Buchwald D. Chronic fatigue syndrome: a review.  Am J Psychiatry. 2003;  160 221-236
    CrossrefPubMedGoogle Scholar
  • 47 Drent M, Wirnsberger R M, de Vries J, van Dieijen-Visser M P, Wouters E F, Schols A M. Association of fatigue with an acute phase response in sarcoidosis.  Eur Respir J. 1999;  13 718-722
    CrossrefPubMedGoogle Scholar
  • 48 De Vries J, Michielsen H, Van Heck G L, Drent M. Measuring fatigue in sarcoidosis: the Fatigue Assessment Scale (FAS).  Br J Health Psychol. 2004;  9(Pt 3) 279-291
    CrossrefPubMedGoogle Scholar
  • 49 Hoitsma E, De Vries J, van Santen-Hoeufft M, Faber C G, Drent M. Impact of pain in a Dutch sarcoidosis patient population.  Sarcoidosis Vasc Diffuse Lung Dis. 2003;  20 33-39
    PubMedGoogle Scholar
  • 50 Hoitsma E, Faber C G, Drent M, Sharma O P. Neurosarcoidosis: a clinical dilemma.  Lancet Neurol. 2004;  3 397-407
    CrossrefPubMedGoogle Scholar
  • 51 Lower E E, Weiss K L. Neurosarcoidosis.  Clin Chest Med. 2008;  29 475-492, ix
    CrossrefPubMedGoogle Scholar
  • 52 Drent M, Verbraecken J, van der Grinten C, Wouters E. Fatigue associated with obstructive sleep apnea in a patient with sarcoidosis.  Respiration. 2000;  67 337-340
    CrossrefPubMedGoogle Scholar
  • 53 Turner G A, Lower E E, Corser B C, Gunther K L, Baughman R P. Sleep apnea in sarcoidosis.  Sarcoidosis Vasc Diffuse Lung Dis. 1997;  14 61-64
    PubMedGoogle Scholar
  • 54 Verbraecken J, Hoitsma E, van der Grinten C P, Cobben N A, Wouters E F, Drent M. Sleep disturbances associated with periodic leg movements in chronic sarcoidosis.  Sarcoidosis Vasc Diffuse Lung Dis. 2004;  21 137-146
    PubMedGoogle Scholar
  • 55 Devigili G, Tugnoli V, Penza P et al.. The diagnostic criteria for small fibre neuropathy: from symptoms to neuropathology.  Brain. 2008;  131(Pt 7) 1912-1925
    CrossrefPubMedGoogle Scholar
  • 56 Goldstein D S, Robertson D, Esler M, Straus S E, Eisenhofer G. Dysautonomias: clinical disorders of the autonomic nervous system.  Ann Intern Med. 2002;  137 753-763
    PubMedGoogle Scholar
  • 57 Hoitsma E, Faber C G, van Santen-Hoeufft M, De Vries J, Reulen J P, Drent M. Improvement of small fiber neuropathy in a sarcoidosis patient after treatment with infliximab.  Sarcoidosis Vasc Diffuse Lung Dis. 2006;  23 73-77
    PubMedGoogle Scholar
  • 58 Lower E E, Harman S, Baughman R P. Double-blind, randomized trial of dexmethylphenidate hydrochloride for the treatment of sarcoidosis-associated fatigue.  Chest. 2008;  133 1189-1195
    CrossrefPubMedGoogle Scholar
  • 59 Chalder T, Berelowitz G, Pawlikowska T et al.. Development of a fatigue scale.  J Psychosom Res. 1993;  37 147-153
    CrossrefPubMedGoogle Scholar
  • 60 Deale A, Chalder T, Marks I, Wessely S. Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled trial.  Am J Psychiatry. 1997;  154 408-414
    PubMedGoogle Scholar
  • 61 Lower E E, Fleishman S, Cooper A et al.. Efficacy of dexmethylphenidate for the treatment of fatigue after cancer chemotherapy: a randomized clinical trial.  J Pain Symptom Manage. 2009;  38 650-662
    CrossrefPubMedGoogle Scholar
  • 62 Breitbart W, Rosenfeld B, Kaim M, Funesti-Esch J. A randomized, double-blind, placebo-controlled trial of psychostimulants for the treatment of fatigue in ambulatory patients with human immunodeficiency virus disease.  Arch Intern Med. 2001;  161 411-420
    CrossrefPubMedGoogle Scholar
  • 63 Blockmans D, Persoons P, Van Houdenhove B, Bobbaers H. Does methylphenidate reduce the symptoms of chronic fatigue syndrome?.  Am J Med. 2006;  119 167.e23-30
    PubMedGoogle Scholar
  • 64 Wagner M T, Marion S D, Judson M A. The effects of fatigue and treatment with methylphenidate on sustained attention in sarcoidosis.  Sarcoidosis Vasc Diffuse Lung Dis. 2005;  22 235
    PubMedGoogle Scholar
  • 65 De Vries J. Quality of life assessment. In: Vingerhoets AJJM Assessment in Behavioral Medicine. Hove; Brunner-Routledge, UK 2001: 353-370
    PubMedGoogle Scholar
  • 66 Baughman R P, Drent M, Kavuru M Sarcoidosis Investigators et al. Infliximab therapy in patients with chronic sarcoidosis and pulmonary involvement.  Am J Respir Crit Care Med. 2006;  174 795-802
    CrossrefPubMedGoogle Scholar
  • 67 Rossman M D, Newman L S, Baughman R P et al.. A double-blinded, randomized, placebo-controlled trial of infliximab in subjects with active pulmonary sarcoidosis.  Sarcoidosis Vasc Diffuse Lung Dis. 2006;  23 201-208
    PubMedGoogle Scholar
  • 68 Judson M A, Silvestri J, Hartung C, Byars T, Cox C E. The effect of thalidomide on corticosteroid-dependent pulmonary sarcoidosis.  Sarcoidosis Vasc Diffuse Lung Dis. 2006;  23 51-57
    PubMedGoogle Scholar
  • 69 Baughman R P, Judson M A, Lower E E et al.. Inhaled iloprost for sarcoidosis associated pulmonary hypertension.  Sarcoidosis Vasc Diffuse Lung Dis. 2009;  26 110-120
    PubMedGoogle Scholar

Jolanda De VriesPh.D. 

CoRPS, Department of Medical Psychology and Neuropsychology

Tilburg University, P.O. Box 90153, 5000 LE Tilburg, The Netherlands

Email: j.devries@uvt.nl