Skip to main content
NCBI home page
The British Journal of Ophthalmology logoLink to The British Journal of Ophthalmology
. 1998 Jul;82(7):773–779. doi: 10.1136/bjo.82.7.773

Development of a disease specific quality of life questionnaire for patients with Graves' ophthalmopathy: the GO-QOL

C Terwee 1, M Gerding 1, F Dekker 1, M Prummel 1, W Wiersinga 1
PMCID: PMC1722683  PMID: 9924370

Abstract

AIM—To develop a reliable and valid disease specific quality of life questionnaire (the GO-QOL) for patients with Graves' ophthalmopathy (GO), that can be used to describe the health related quality of life and changes in health related quality of life over time as a consequence of disease and treatment.
METHODS—70 consecutive GO patients (age >18 years) who were referred for the first time to the combined outpatient clinic of the orbital centre and the department of endocrinology completed the 16 questions of the GO-QOL. Additional information on general quality of life and disease characteristics was obtained. Construct validity and internal consistency of the disease specific questionnaire was determined, based on principal component analysis, Cronbach alphas and correlations with MOS-24, three subscales of the SIP, demographic, and clinical measures.
RESULTS—The a priori expected subdivision of the questionnaire in two subscales, one measuring the consequences of double vision and decreased visual acuity on visual functioning, and one measuring the psychosocial consequences of a changed appearance, was confirmed in the principal component analysis. Both scales had a good reliability and high face validity. Correlations with other measures supported construct validity. Mean scores (range 0-100) were 54.7 (SD 22.8) for visual functioning and 60.1 (24.8) for appearance (higher score = better health).
CONCLUSION—The GO-QOL is a promising tool to measure disease specific aspects of quality of life in patients with GO and provides additional information to traditional physiological or biological measures of health status. 

 Keywords: Graves' ophthalmopathy; health related quality of life; questionnaire

Full Text

The Full Text of this article is available as a PDF (98.7 KB).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Bartley G. B., Fatourechi V., Kadrmas E. F., Jacobsen S. J., Ilstrup D. M., Garrity J. A., Gorman C. A. Long-term follow-up of Graves ophthalmopathy in an incidence cohort. Ophthalmology. 1996 Jun;103(6):958–962. doi: 10.1016/s0161-6420(96)30579-4. [DOI] [PubMed] [Google Scholar]
  2. Battu V. K., Meyer D. R., Wobig J. L. Improvement in subjective visual function and quality of life outcome measures after blepharoptosis surgery. Am J Ophthalmol. 1996 Jun;121(6):677–686. doi: 10.1016/s0002-9394(14)70634-8. [DOI] [PubMed] [Google Scholar]
  3. 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 Aug;19(8):787–805. doi: 10.1097/00005650-198108000-00001. [DOI] [PubMed] [Google Scholar]
  4. Bland J. M., Altman D. G. Cronbach's alpha. BMJ. 1997 Feb 22;314(7080):572–572. doi: 10.1136/bmj.314.7080.572. [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Burch H. B., Wartofsky L. Graves' ophthalmopathy: current concepts regarding pathogenesis and management. Endocr Rev. 1993 Dec;14(6):747–793. doi: 10.1210/edrv-14-6-747. [DOI] [PubMed] [Google Scholar]
  6. Cassard S. D., Patrick D. L., Damiano A. M., Legro M. W., Tielsch J. M., Diener-West M., Schein O. D., Javitt J. C., Bass E. B., Steinberg E. P. Reproducibility and responsiveness of the VF-14. An index of functional impairment in patients with cataracts. Arch Ophthalmol. 1995 Dec;113(12):1508–1513. doi: 10.1001/archopht.1995.01100120038005. [DOI] [PubMed] [Google Scholar]
  7. Classification of eye changes of Graves' disease. Thyroid. 1992 Fall;2(3):235–236. doi: 10.1089/thy.1992.2.235. [DOI] [PubMed] [Google Scholar]
  8. Damiano A. M., Steinberg E. P., Cassard S. D., Bass E. B., Diener-West M., Legro M. W., Tielsch J., Schein O. D., Javitt J., Kolb M. Comparison of generic versus disease-specific measures of functional impairment in patients with cataract. Med Care. 1995 Apr;33(4 Suppl):AS120–AS130. [PubMed] [Google Scholar]
  9. Desai P., Reidy A., Minassian D. C., Vafidis G., Bolger J. Gains from cataract surgery: visual function and quality of life. Br J Ophthalmol. 1996 Oct;80(10):868–873. doi: 10.1136/bjo.80.10.868. [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Ellwein L. B., Fletcher A., Negrel A. D., Thulasiraj R. D. Quality of life assessment in blindness prevention interventions. Int Ophthalmol. 1994;18(5):263–268. doi: 10.1007/BF00917828. [DOI] [PubMed] [Google Scholar]
  11. Gerding M. N., Terwee C. B., Dekker F. W., Koornneef L., Prummel M. F., Wiersinga W. M. Quality of life in patients with Graves' ophthalmopathy is markedly decreased: measurement by the medical outcomes study instrument. Thyroid. 1997 Dec;7(6):885–889. doi: 10.1089/thy.1997.7.885. [DOI] [PubMed] [Google Scholar]
  12. Guyatt G. H., Bombardier C., Tugwell P. X. Measuring disease-specific quality of life in clinical trials. CMAJ. 1986 Apr 15;134(8):889–895. [PMC free article] [PubMed] [Google Scholar]
  13. Guyatt G. H., Feeny D. H., Patrick D. L. Measuring health-related quality of life. Ann Intern Med. 1993 Apr 15;118(8):622–629. doi: 10.7326/0003-4819-118-8-199304150-00009. [DOI] [PubMed] [Google Scholar]
  14. Guyatt G. H., Naylor C. D., Juniper E., Heyland D. K., Jaeschke R., Cook D. J. Users' guides to the medical literature. XII. How to use articles about health-related quality of life. Evidence-Based Medicine Working Group. JAMA. 1997 Apr 16;277(15):1232–1237. doi: 10.1001/jama.277.15.1232. [DOI] [PubMed] [Google Scholar]
  15. Lee P. P., Spritzer K., Hays R. D. The impact of blurred vision on functioning and well-being. Ophthalmology. 1997 Mar;104(3):390–396. doi: 10.1016/s0161-6420(97)30303-0. [DOI] [PubMed] [Google Scholar]
  16. Lyons C. J., Rootman J. Orbital decompression for disfiguring exophthalmos in thyroid orbitopathy. Ophthalmology. 1994 Feb;101(2):223–230. doi: 10.1016/s0161-6420(94)31343-1. [DOI] [PubMed] [Google Scholar]
  17. Mangione C. M., Phillips R. S., Lawrence M. G., Seddon J. M., Orav E. J., Goldman L. Improved visual function and attenuation of declines in health-related quality of life after cataract extraction. Arch Ophthalmol. 1994 Nov;112(11):1419–1425. doi: 10.1001/archopht.1994.01090230033017. [DOI] [PubMed] [Google Scholar]
  18. Mangione C. M., Phillips R. S., Seddon J. M., Lawrence M. G., Cook E. F., Dailey R., Goldman L. Development of the 'Activities of Daily Vision Scale'. A measure of visual functional status. Med Care. 1992 Dec;30(12):1111–1126. doi: 10.1097/00005650-199212000-00004. [DOI] [PubMed] [Google Scholar]
  19. Musch D. C., Farjo A. A., Meyer R. F., Waldo M. N., Janz N. K. Assessment of health-related quality of life after corneal transplantation. Am J Ophthalmol. 1997 Jul;124(1):1–8. doi: 10.1016/s0002-9394(14)71636-8. [DOI] [PubMed] [Google Scholar]
  20. Parrish R. K., 2nd, Gedde S. J., Scott I. U., Feuer W. J., Schiffman J. C., Mangione C. M., Montenegro-Piniella A. Visual function and quality of life among patients with glaucoma. Arch Ophthalmol. 1997 Nov;115(11):1447–1455. doi: 10.1001/archopht.1997.01100160617016. [DOI] [PubMed] [Google Scholar]
  21. Patrick D. L., Deyo R. A. Generic and disease-specific measures in assessing health status and quality of life. Med Care. 1989 Mar;27(3 Suppl):S217–S232. doi: 10.1097/00005650-198903001-00018. [DOI] [PubMed] [Google Scholar]
  22. Prummel M. F., Mourits M. P., Berghout A., Krenning E. P., van der Gaag R., Koornneef L., Wiersinga W. M. Prednisone and cyclosporine in the treatment of severe Graves' ophthalmopathy. N Engl J Med. 1989 Nov 16;321(20):1353–1359. doi: 10.1056/NEJM198911163212002. [DOI] [PubMed] [Google Scholar]
  23. Prummel M. F., Mourits M. P., Blank L., Berghout A., Koornneef L., Wiersinga W. M. Randomized double-blind trial of prednisone versus radiotherapy in Graves' ophthalmopathy. Lancet. 1993 Oct 16;342(8877):949–954. doi: 10.1016/0140-6736(93)92001-a. [DOI] [PubMed] [Google Scholar]
  24. Salive M. E., Guralnik J., Glynn R. J., Christen W., Wallace R. B., Ostfeld A. M. Association of visual impairment with mobility and physical function. J Am Geriatr Soc. 1994 Mar;42(3):287–292. doi: 10.1111/j.1532-5415.1994.tb01753.x. [DOI] [PubMed] [Google Scholar]
  25. Scott I. U., Schein O. D., West S., Bandeen-Roche K., Enger C., Folstein M. F. Functional status and quality of life measurement among ophthalmic patients. Arch Ophthalmol. 1994 Mar;112(3):329–335. doi: 10.1001/archopht.1994.01090150059023. [DOI] [PubMed] [Google Scholar]
  26. Steinberg E. P., Tielsch J. M., Schein O. D., Javitt J. C., Sharkey P., Cassard S. D., Legro M. W., Diener-West M., Bass E. B., Damiano A. M. The VF-14. An index of functional impairment in patients with cataract. Arch Ophthalmol. 1994 May;112(5):630–638. doi: 10.1001/archopht.1994.01090170074026. [DOI] [PubMed] [Google Scholar]
  27. Stewart A. L., Hays R. D., Ware J. E., Jr The MOS short-form general health survey. Reliability and validity in a patient population. Med Care. 1988 Jul;26(7):724–735. doi: 10.1097/00005650-198807000-00007. [DOI] [PubMed] [Google Scholar]
  28. Strand C. V., Russell A. S. WHO/ILAR Taskforce on quality of life. J Rheumatol. 1997 Aug;24(8):1630–1633. [PubMed] [Google Scholar]
  29. Testa M. A., Simonson D. C. Assesment of quality-of-life outcomes. N Engl J Med. 1996 Mar 28;334(13):835–840. doi: 10.1056/NEJM199603283341306. [DOI] [PubMed] [Google Scholar]
  30. Weetman A. P. Thyroid-associated eye disease: pathophysiology. Lancet. 1991 Jul 6;338(8758):25–28. doi: 10.1016/0140-6736(91)90013-f. [DOI] [PubMed] [Google Scholar]
  31. Werner S. C. Modification of the classification of the eye changes of Graves' disease: recommendations of the Ad Hoc Committee of the American Thyroid Association. J Clin Endocrinol Metab. 1977 Jan;44(1):203–204. doi: 10.1210/jcem-44-1-203. [DOI] [PubMed] [Google Scholar]
  32. Wilson I. B., Cleary P. D. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA. 1995 Jan 4;273(1):59–65. [PubMed] [Google Scholar]
  33. Wu A. W., Coleson L. C., Holbrook J., Jabs D. A. Measuring visual function and quality of life in patients with cytomegalovirus retinitis. Development of a questionnaire. Studies of Ocular Complication of AIDS Research Group. Arch Ophthalmol. 1996 Jul;114(7):841–847. doi: 10.1001/archopht.1996.01100140055008. [DOI] [PubMed] [Google Scholar]

Articles from The British Journal of Ophthalmology are provided here courtesy of BMJ Publishing Group

RESOURCES