Sarcoidosis

Sarcoidosis is an inflammatory disease which is usually diagnosed in young adults and occurs most frequently in the lungs or lymph nodes, although it can appear in other organs. Symptoms, if experienced, vary depending on the organ(s) involved, and can be mild or severe. They may include dyspnea and persistent cough, or may be more general, such as fatigue, weight loss, or overall feeling of ill health, or may involve other organs, such as enlarged lymph glands or skin lesions. In many patients sarcoidosis resolves within two to three years, often disappearing spontaneously and leaving no residual effects. However, approximately one-quarter of patients sustain permanent lung damage as a result of scarring, and some may suffer from chronic sarcoidosis. In about five percent of patients, the damage from sarcoidosis progresses enough that organ transplantation (such as lungs, heart, liver) is required or death occurs. The cause of sarcoidosis is not known, and there is no known cure. Treatment is supportive; corticosteroids may be prescribed to control inflammation.

Both generic and respiratory condition-specific instruments have been used to measure health related quality of life in Sarcoidosis.

Generic Health-Related Quality of Life Instruments Used in Sarcoidosis

Sickness Impact Profile

• Drent M, Wirnsberger RM, Breteler MHM, Kock LMM, de Vries J,Wouters EFM. Quality of life and depressive symptoms in patients suffering from sarcoidosis. Sarcoidosis Vasculitis Diffuse Lung Dis 1998;15:59-66.

Medical Outcomes Study SF-36

• Brancaleone P, Perez T, Robin S, Neviere R, Wallaert B. Clinical impact of inspiratory muscle impairment in sarcoidosis. Sarcoidosis Vasc Diffuse Lung Dis. Oct 2004;21(3):219-227.
• Cox CE, Donohue JF, Brown CD, Kataria YP, Judson MA. Health-related quality of life of persons with sarcoidosis. Chest. 2004; 125(3):997-1004.
• 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(3):323-9.

World Health Organization Quality of Life assessment instrument (WHOQOL-100)

• de Vries J, Drent M, Van Heck GL, Wouters EFM. Quality of life in sarcoidosis: a comparison between members of a patient organisation and a random sample. Sarcoidosis Vasculititis Diffuse Lung Diseases. 1998;15;183-8.
• De Vries J, Michielsen H, Van Heck GL, Drent M. Measuring fatigue in sarcoidosis: the Fatigue Assessment Scale (FAS). Br J Health Psychol. Sep 2004;9(Pt 3):279-291
• Wirnsberger RM, de Vries J, Breteler MHM, van Heck GL, Wouters EFM, Drent M. Evaluation of quality of life in sarcoidosis patients. Respir Med. 1998;92:750-6.
• Wirnsberger RM, de Vries J, Jansen TLThA, van Heck GL, Wouters EFM, Drent M. Impairment of quality of life: rheumatoid arthritis versus sarcoidosis. Netherlands J Med. 1999:54:86-95.

Condition-Specific Health-Related Quality of Life Instruments Used in Sarcoidosis

Sarcoidosis Health Questionnaire

• 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(3):323-9.

St. George's Respiratory Questionnaire

• Cox CE, Donohue JF, Brown CD, Kataria YP, Judson MA. Health-related quality of life of persons with sarcoidosis. Chest. 2004; 125(3):997-1004.
• 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(3):323-9.