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Communications to the Editor |

Measuring Quality of Life in Interstitial Lung Disease FREE TO VIEW

, PhD; Marjolein Drent, MD, PhD
Author and Funding Information

Affiliations: Tilburg University Tilburg, The Netherlands University Hospital Maastricht Maastricht, The Netherlands,  University of Washington School of Medicine and School of Public Health Seattle, WA

Correspondence to: Marjolein Drent, MD, PhD, Department of Pulmonology, University Hospital Maastricht, PO Box 5800, 6202 AZ Maastricht, The Netherlands; e-mail: mdr@slon.azm.nl



Chest. 2000;118(1):275. doi:10.1378/chest.118.1.275
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To the Editor:

Chang et al (November 1999)1 studied the usefulness of four health-related quality of life (QOL) instruments, two generic and two respiratory-specific measures, in a group of interstitial lung disease patients (33 idiopathic pulmonary fibrosis[ IPF], 10 sarcoidosis, and 7 miscellaneous), and concluded that the Medical Outcome Study Short Form 36 (SF-36) and the St. George’s Respiratory Questionnaire (SGRQ) are good tools for measuring health-related QOL or health status.

We would like to make a few comments. First, researchers should realize that there is a difference between health status or health-related QOL and QOL. Health status or health-related QOL assesses the influence of disease on physical, emotional, and social functioning. In contrast, the core of QOL is the person’s perception of his or her life. When QOL is studied using health status measures, one major problem is that lower levels of functioning are equated with lower QOL. This contrasts with empirical findings reflecting high perceived QOL in spite of low levels of functioning. Furthermore, QOL has a much wider scope than the physical, emotional, and social domains. For instance, the SGRQ measures 3 aspects (activity, symptoms, impact) and the SF-36 has 8 dimensions, whereas the World Health Organization Quality of Life assessment instrument (WHOQOL) measures 24 aspects of QOL. Moreover, QOL encompasses the respondents’ own perception of aspects of their life, while health status asks respondents about the presence or frequency of behavior and feelings.2Second, in a number of studies that we conducted among sarcoidosis patients using the WHOQOL, it appeared that, among others, fatigue is a major problem for sarcoidosis patients.35 This aspect is not measured by the SGRQ nor the SF-36. Thus, when applying either or both of these measures recommended by Chang and colleagues,1this important aspect is not assessed. Third, we have used focus groups with IPF patients to establish the feasibility of the SGRQ and the WHOQOL within this population. The focus group participants made substantial negative remarks about the SGRQ. In addition, the scales of the SGRQ were not mentioned as important aspects of life by the patients.2

Considering the above-mentioned remarks, we doubt whether the SF-36 and the SGRQ are good indicators of the problems that interstitial lung disease patients face. In previous studies, we established that the WHOQOL-100 has good validity and reliability within sarcoidosis patients. For example, the WHOQOL-100 distinguishes well between sarcoidosis patients with and without complaints.3,5 The WHOQOL-100 also appears to be useful in a IPF population.2

References

Chang, JA, Curtis, JR, Patrick, DL, et al (1999) Assessment of health-related quality of life in patients with interstitial lung disease.Chest116,1175-1182. [CrossRef] [PubMed]
 
De Vries, J, Seebregts, A, Drent, M Assessing health status and quality of life in idiopathic pulmonary fibrosis: which measure should be used?Respir Med2000;94,273-278. [CrossRef] [PubMed]
 
Wirnsberger, RM, De Vries, J, Breteler, MHM, et al Evaluation of quality of life of sarcoidosis patients.Respir Med1998;92,750-756. [CrossRef] [PubMed]
 
Wirnsberger, RM, De Vries, J, Jansen, TLThA, et al Impairment of quality of life: rheumatoid arthritis versus sarcoidosis.Neth J Med1999;54,86-95. [CrossRef] [PubMed]
 
De Vries, J, Drent, M, Van Heck, GL, et al Quality of life in sarcoidosis: a comparison between members of a patient organisation and a random sample.Sarcoidosis Vasc Diffuse Lung Dis1998;15,183-188. [PubMed]
 
To the Editor:

We appreciate the concerns expressed by Drs. De Vries and Drent about our recent publication in CHEST.1We agree whole-heartedly with the importance of distinguishing quality of life from health-related quality of life and health status. This is an important distinction and a distinction that one of us has written about extensively.2 Our article assesses health-related quality-of-life measures, and Drs. De Vries and Drent correctly point out that, in a few places in the article,1 we abbreviated the concept as quality of life when we should have used the abbreviation HRQOL (for health-related quality of life). Drs. De Vries and Drent cite some potentially exciting qualitative work comparing the Saint Georges Respiratory Questionnaire (SGRQ) and the World Health Organization Quality of Life (WHOQOL) instrument. We look forward to seeing this research in print. However, in choosing between the SGRQ, the Medical Outcomes Study Short Form-36, and the WHOQOL, it will be important that researchers decide what domains are most important in the particular study: quality of life or health-related quality of life and generic or disease-specific. Furthermore, for studies in which both domains are important, it will be important to have head-to-head comparisons of the instruments measuring the reliability, validity, and responsiveness of each. It will not be possible to make the blanket statement that WHQOL or SGRQ is a better measure for sarcoidosis or idiopathic pulmonary fibrosis based on a single qualitative study.

References
Chang, JA, Curtis, JR, Patrick, DL, et al Assessment of health-related quality of life in patients with interstitial lung disease.Chest1999;116,1175-1182. [CrossRef] [PubMed]
 
Patrick, DL, Erickson, P. Health status and health policy: quality of life in health care evaluation and resource allocation. 1993; Oxford University Press. New York, NY:.
 

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Tables

References

Chang, JA, Curtis, JR, Patrick, DL, et al (1999) Assessment of health-related quality of life in patients with interstitial lung disease.Chest116,1175-1182. [CrossRef] [PubMed]
 
De Vries, J, Seebregts, A, Drent, M Assessing health status and quality of life in idiopathic pulmonary fibrosis: which measure should be used?Respir Med2000;94,273-278. [CrossRef] [PubMed]
 
Wirnsberger, RM, De Vries, J, Breteler, MHM, et al Evaluation of quality of life of sarcoidosis patients.Respir Med1998;92,750-756. [CrossRef] [PubMed]
 
Wirnsberger, RM, De Vries, J, Jansen, TLThA, et al Impairment of quality of life: rheumatoid arthritis versus sarcoidosis.Neth J Med1999;54,86-95. [CrossRef] [PubMed]
 
De Vries, J, Drent, M, Van Heck, GL, et al Quality of life in sarcoidosis: a comparison between members of a patient organisation and a random sample.Sarcoidosis Vasc Diffuse Lung Dis1998;15,183-188. [PubMed]
 
Chang, JA, Curtis, JR, Patrick, DL, et al Assessment of health-related quality of life in patients with interstitial lung disease.Chest1999;116,1175-1182. [CrossRef] [PubMed]
 
Patrick, DL, Erickson, P. Health status and health policy: quality of life in health care evaluation and resource allocation. 1993; Oxford University Press. New York, NY:.
 
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