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Quality of Life Measurement in Patients with Graves’ Ophthalmopathy

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Book cover Thyroid Eye Disease

Part of the book series: Endocrine Updates ((ENDO,volume 14))

Abstract

The measurement of the effects of Graves’ ophthalmopathy (GO) and its treatments on the quality of life of these patients is a new and challenging research area. In this chapter an introduction is given to the methodology of (health-related) quality of life measurement in general and the application of these methods in GO research specifically. Special attention is given to the recently developed GO-specific quality of life questionnaire, the GO-QOL. This questionnaire was specifically developed to be used as an outcome measure for GO research. The development, reliability, validity and interpretation of the GO-QOL are discussed. In the second part of this chapter a state of the art literature review is presented on the use of patient’s perceptions in the description of the impact of GO on the patients’ lives and in the evaluations of treatments for GO.

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References

  1. World Health Organization. WHO Constitution. WHO, Geneva, 1948.

    Google Scholar 

  2. Testa, M.A., and D.C. Simonson. Assessment of quality of life outcomes. New England Journal of Medicine 1996; 334:835–840.

    Article  PubMed  CAS  Google Scholar 

  3. Guyatt, G.H., D. Naylor, E. Juniper, D.K. Heyland, R. Jaeschke, and D.J. Cook. Users’ guides to the medical literature. XII How to use articles about health-related quality of life. JAMA 1997; 277:1232–1237.

    Article  PubMed  CAS  Google Scholar 

  4. Gill, T.M., and A.R. Feinstein. A critical appraisal of the quality of life measurements. JAMA 1994; 272(8):619–631.

    Article  PubMed  CAS  Google Scholar 

  5. Leplège, A., and S. Hunt. The problem of quality of life in medicine. JAMA 1997; 278:47–50.

    Article  PubMed  Google Scholar 

  6. Hunt SM. The problem of quality of life. Quality of Life Research 1997; 6:205–212.

    PubMed  CAS  Google Scholar 

  7. Wood-Dauphine, S. Assessing quality of life in clinical research: From where have we come and where are we going? Journal of Clinical Epidemiology 1999; 52:355363.

    Google Scholar 

  8. Guyatt, G.H., D.H. Feeny, and D.L. Patrick. Measuring health related quality of life. Annals of Internal Medicine 1993; 118:622–629.

    PubMed  CAS  Google Scholar 

  9. Elliot, D.B., M.A. Hurst, and J. Weatherill. Comparing clinical tests of visual function in cataract with the patient’s perceived visual disability. Eye 1990; 4:712717.

    Google Scholar 

  10. Carta, A., L. Braccio, M. Belpoliti, L. Soliani, F. Sartore, S.A. Gandolfi, and G. Maraini. Self-assessment of the quality of vision: Association of questionnaire score with objective clinical tests. Current Eye Research 1998; 17:506–512.

    Article  PubMed  CAS  Google Scholar 

  11. Prummel, M.F., M.P. Mourits, L. Blank, A. Berghout, L. Koornneef, and W.M. Wiersinga. Randomized double-blind trial of prednisone versus radiotherapy in Graves’ ophthalmopathy. Lancet 1993; 342:949–954.

    Article  PubMed  CAS  Google Scholar 

  12. Bartley, G.B., V. Fatourechi, E.F. Kadrmas, S.J. Jacobsen, D.M. Ilstrup, J.A. Garrity, and C.A. Gorman. Long-term follow-up of Graves Ophthalmopathy in an incidence cohort. Ophthalmology 1996; 103:958–962.

    PubMed  CAS  Google Scholar 

  13. Wilson, I.B., and P.D. Cleary. Linking clinical variables with health-related quality of life. JAMA 1995; 273:59–65.

    Article  PubMed  CAS  Google Scholar 

  14. World Health Organization. International Classification of Impairments, Disabilities, and Handicaps. World Health Organization, Geneva, Switzerland, 1980.

    Google Scholar 

  15. Connelly, J.E., J.T. Philbrick, G.R. Smith, Jr., D.L. Kaiser, and A. Wymer. Health perceptions of primary care patients and the influence on health care utilization. Medical Care 1989; 27:S99–109.

    Article  PubMed  CAS  Google Scholar 

  16. Kaplan, G.A., and T. Camacho. Perceived health and mortality: a nine-year follow-up of the human population laboratory cohort. American Journal of Epidemiology 1983; 117:292–304.

    PubMed  CAS  Google Scholar 

  17. Dijkers, M. Measuring quality of life. Am J Phys Med Rehabil 1999; 78:286–300.

    Article  PubMed  CAS  Google Scholar 

  18. Partick, D.L., and R.A. Deyo. Generic and disease-specific measures in assessing health status and quality of life. Medical Care 1989; 27:S217–S232.

    Article  Google Scholar 

  19. Stewart, A.L., R.D. Hays, and J.E. Ware. The MOS Short-form General Health Survey: Reliability and validity in a patient population. Medical Care 1988; 26:724–735.

    Article  PubMed  CAS  Google Scholar 

  20. Ware, J.E., and C.D. Sherboume. The MOS 36-item Short-Form Health Survey (SF-36).1. Conceptual framework and item selection. Medical Care 1992; 30:473–483.

    Article  PubMed  Google Scholar 

  21. Aaronson, N.K., C. Acquadro, J. Alonso, G. Apolone, D. Bucquet, M. Bullinger, K. Bungay, S. Fukuhara, B. Gandek, S. Keller, D. Razavi, R. Sanson-Fisher, M. Sullivan, S. Wood-Dauphine, A. Wagner, and J.E. Ware. International quality of life assessment (IQOLA) project. Quality of Life Research. 1:349–351, 1992.

    Article  PubMed  CAS  Google Scholar 

  22. Bergner, M., R.A. Bobbin, S. Kressel, W.E. Pollard, B.S. Gilson, and J.R. Morris. The Sickness Impact Profile: Conceptual formulation and methodology for the development of a health status measure. International Journal of Health Services 1976; 6:393–415.

    Article  PubMed  CAS  Google Scholar 

  23. Terwee, C.B., M.N. Gerding, F.W. Dekker, M.F. Prummel, and W.M. Wiersinga. Development of a disease-specific quality of life questionnaire for patients with Graves’ ophthalmopathy: The GO-QOL. British Journal of Ophthalmology 1998; 82:773–779.

    Article  CAS  Google Scholar 

  24. Hays, R.D., R.T. Anderson, and D. Revicki. Assessing reliability and validity of measurement in clinical trials. In Quality of life assessment in clinical trials. Methods and practice. M.J. Staquet, R.D. Hays, and P.M. Fayers, editors. Oxford University Press, Oxford 1998; 169–182.

    Google Scholar 

  25. Terwee, C.B., M.N. Gerding, F.W. Dekker, M.F. Prummel, J.P. van der Pol, and W.M. Wiersinga. Test-retest reliability of the GO-QOL: A disease-specific quality of life questionnaire for patients with Graves’ ophthalmopathy. Journal of Clinical Epidemiology 1999; 52:875–884.

    Article  PubMed  CAS  Google Scholar 

  26. Terwee, C.B., F.W. Dekker, M.P. Mounts, M.N. Gerding, L. Baldeschi, R. Kalmann, M.F. Prummel, and W.M. Wiersinga. Interpretation and validity of changes in scores on the Graves’ Ophthalmopathy Quality Of Life questionnaire (GO-QOL) after different treatments. Accepted for publication in Clinical Endocrinology, 2000.

    Google Scholar 

  27. Guillemin, F., C. Bombardier, and D. Beaton. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. Journal of Clinical Epidemiology 1993; 46:1417–1432.

    Article  PubMed  CAS  Google Scholar 

  28. Anderson RT, Leplege AP, Wilkin D. International use and application of generic health-related quality of life instruments. In Quality of life and pharmacoeconomics in clinical trials. S. B, editor. Lippincott-Raven Publishers, Philadelphia. 613–630, 1996.

    Google Scholar 

  29. Kazis, L E., J.J. Anderson, and R.F. Meenan. Effect sizes for interpreting changes in health status. Medical Care 1989; 27:S178–S189.

    Article  PubMed  CAS  Google Scholar 

  30. Terwee, C.B., F.W. Dekker, W.M. Wiersinga, M.F. Prummel, and P.M.M. Bossuyt. On Assessing responsiveness of health-related quality of life instruments: Guidelines for instrument evaluation. submitted for publication, 2000.

    Google Scholar 

  31. Lohr, K.N., N.K. Aaronson, J. Alonso, M.A. Burnam, D.L. Patrick, E.B. Perrin, and J.S. Roberts. Evaluating quality of life and health status instruments: Development of scientific review criteria. Clinical Therapeutics 1996; 18:979–992.

    Article  PubMed  CAS  Google Scholar 

  32. Lydick, E.G., and R.S. Epstein. Clinical significance of quality of life data. In Quality of life and pharmacoeconomics in clinical trials. B. Spilker, editor. Lippincott-Raven Publishers, Philadelphia. 461–465, 1996.

    Google Scholar 

  33. Jaeschke, R., J. Singer, and G.H. Guyatt. Measurement of health status. Ascertaining the minimal clinically important difference. Controlled Clinical Trials 1989; 10:407415.

    Google Scholar 

  34. Gerding, M.N., C.B. Terwee, F.W. Dekker, M.F. Prummel, and W.M. Wiersinga. Quality of life in patients with Graves’ ophthalmopathy is markedly decreased: Measurement by the Medical Outcome Study instrument. Thyroid 1997; 7:885–889.

    Article  PubMed  CAS  Google Scholar 

  35. Kahaly, G.J., F. Petrak, J. Batke, J. Best, M. Rothenbacher, M. Meinhold, and U.T. Egle. Quality of life and adverse events in Graves’ ophthalmopathy. In Abstract book of the VIth International Symposium on Graves’ Ophthalmopathy. November 27–28, Amsterdam. 9, 1998.

    Google Scholar 

  36. Aaronson, N.K., M. Muller, P.D.A. Cohen, M.L. Essink-Bot, M. Fekkes, R. Sanderman, M.A.G. Sprangers, A. Velde, and E. Verrips. Translation, validation, and norming of the Dutch language version of the SF-36 health survey in community and chronic disease populations. Journal of Clinical Epidemiology 1998; 51:1055–1068.

    Article  PubMed  CAS  Google Scholar 

  37. LaForge, R.G., W.D. Spector, and J. Sternberg. The relationship of vision and hearing impairment to one-year mortality and functional decline. J Aging Health Care 1992; 4:126–148.

    Article  Google Scholar 

  38. Salive, M.E., J. Guralnik, R.J. Glynn, W. Christen, R.B. Wallace, and A.M. Ostfeld. Association of visual impairment with mobility and physical function. Journal of the American Geriatric Society 1994; 42:287–292.

    CAS  Google Scholar 

  39. Scott, I.U., O.D. Schein, S. West, K. Bandeen-Roche, C. Enger, and M.F. Folstein. Functional status and quality of life measurement among ophthalmic patients. Archives of Ophthalmology 1994; 112:329–335.

    Article  PubMed  CAS  Google Scholar 

  40. Kington, R., J. Rogowski, L. Lillard, and P.P. Lee. Functional associations of “trouble seeing”. Journal of General Internal Medicine 1997; 12:125–128.

    Article  PubMed  CAS  Google Scholar 

  41. Lee, P.P., K. Spritzer, and R.D. Hays. The impact of blurred vision on functioning and well-being. Ophthalmology 1997; 104:390–396.

    PubMed  CAS  Google Scholar 

  42. Scott, I.U., W.E. Smiddy, J. Schiffman, W.J. Feuer, and C.J. Pappas. Quality of life of low-vision patients and the impact of low-vision services. American Journal of Ophthalmology 1999; 128:54–62.

    Article  PubMed  CAS  Google Scholar 

  43. Dropkin, M.J.O., R.G. Malgady, D.W. Scott, M.T. Oberst, and E.W. Strong. Scaling disfigurement and dysfunction in postoperative head and neck patients. Head & Neck Surgery 1983; 6:559–570.

    Article  CAS  Google Scholar 

  44. Ackerstaff, A.H., J.A.H. Lindeboom, A.J.M. Balm, F.H.M. Kroon, I.B. Tan, and F.J.M. Hilgers. Structured assessment of the consequences of composite resection. Clin Otolaryngol 1998; 23:339–344.

    Article  PubMed  CAS  Google Scholar 

  45. Macgregor, F.C. Facial disfigurement: Problems and management of social interaction and implications for mental health. Aesthetic Plastic Surgery 1999; 14:249–257.

    Article  Google Scholar 

  46. Clarke, A. Psychosocial aspects of facial disfigurement: Problems, management and the role of a lay-led organization. Psychology, Health & Medicine 1999; 4:127–142.

    Article  Google Scholar 

  47. Fukunishi, I. Relationship of cosmetic disfigurement to the severity of posttraumatic stress disorder in burn injury or digital amputation. Psychother Psychosom 1999; 68:82–86.

    Article  PubMed  CAS  Google Scholar 

  48. van der Horst, C.M., C.A. de Borgie, J.L. Knopper, and P.M. Bossuyt. Psychosocial adjustment of children and adults with port wine stains. British Journal of Plastic Surgery 1997; 50:463–467.

    Article  PubMed  Google Scholar 

  49. McGrouther, D.A. Facial disfigurement. The last bastion of discrimination. British Medical Journal 1997; 314:991.

    Article  PubMed  CAS  Google Scholar 

  50. Bianchi, G., V. Zaccheroni, R. Cerutti, E. Solaroli, F. Vescini, S. Menini, G. Rivolta, and G. Marchesini. Health-related quality of life in patients with thyroid disorders. Quality of Life Research 1999; 8:631.

    Google Scholar 

  51. Ljunggren, J.G., O. Törring, G. Wallin, A. Taube, L. Tallstedt, B. Hamberger, and G. Lundell. Quality of life aspects and costs in treatment of Graves’ hyperthyroidism with antithyroid drugs, surgery, or radioiodine: results from a prospective, randomized study. Thyroid 1998; 8:653–659.

    Article  PubMed  CAS  Google Scholar 

  52. Pinchera, A., W.M. Wiersinga, D. Glinoer, P. Kendall-Taylor, L. Koornneef, C. Marcocci, and H. Schleusener. Classification of eye changes of Graves’ disease. Thyroid 1992; 2:235–236.

    Article  Google Scholar 

  53. Berg, G., A. Michanek, and E. Nyström. Clinical outcome of radioiodine treatment of hyperthyroidism: a follow-up study. Journal of Internal Medicine 1996; 239:165171.

    Google Scholar 

  54. Törring, O., L. Tallstedt, G. Wallin, G. Lundell, J.G. Ljunggren, A. Taube, M. Sääf, B. Hamberger, and the Thyroid Study Group. Graves’ hyperthyroidism: treatment with antithyroid drugs, surgery, or radioiodine - a prospective, randomized study. Journal of Clinical Endocrinology and Metabolism 1996; 81:2986–2993.

    Article  PubMed  Google Scholar 

  55. Linos, D.A., D. Karakitos, and J. Papademetriou. Should the primary treatment of hyperthyroidism be surgical? European Journal of Surgery 1997; 163:651–657.

    PubMed  CAS  Google Scholar 

  56. Bartelana, L., C. Marcocci, F. Bogazzi, L. Manetti, M.L. Tanda, E. Dell’Unto, G. Bruno-Bossio, M. Nardi, M.P. Bartolomei, A. Lepri, G. Rossi, E. Martino, and A. Pinchera. Relation between therapy for hyperthyroidism and the course of Graves’ ophthalmopathy. New England Journal of Medicine 1998; 338:73–78.

    Article  Google Scholar 

  57. Prummel MF, M.M., Berghout A, Krenning EP, van der Gaag R, Koornneef L, Wiersinga WM. Prednisone and cyclosporine in the treatment of severe Graves’ ophthalmopathy. New England Journal of Medicine 1989; 16:1403–1405.

    Google Scholar 

  58. Baschieri, L., A. Antonelli, S. Nardi, B. Alberti, A. Lepri, R. Canapicchi, and P. Fallahi. Intravenous immunoglobulin versus corticosteroid in treatment of Graves’ ophthalmopathy. Thyroid 1997; 7:579–585.

    Article  PubMed  CAS  Google Scholar 

  59. Mourits, M.P., M.L. van Kempen-Hartenveld, M. Begona Garcia Garcia, H.P.F. Koppeschaar, L. Tick, and C.B. Terwee. Randomized placebo-controlled study of radiotherapy for Graves’ orbitopathy. Lancet 2000; 355:1505–1509.

    Article  PubMed  CAS  Google Scholar 

  60. Kung, A.W.C., J. Michon, K.S. Tai, and F.L. Chan. The effect of somatostatin versus corticosteroid in the treatment of Graves’ ophthalmopathy. Thyroid 1996; 6:381–384.

    Article  PubMed  CAS  Google Scholar 

  61. Matejka, G., B. Verges, G. Vaillant, J.M. Petit, A. Brun-Pacaud, S. Rudoni, and J.M. Brun. Intravenous methylprednisolone pulse therapy in the treatment of Graves’ ophthalmopathy. Horm. Metab. Res 1997; 30:93–98.

    Article  Google Scholar 

  62. Seegenschmiedt, M., I. Keilholz, G. Gusek-Schneider, S. Barth, J. Hensen, F. Wolf, G.O.H. Naumann, and R. Sauer. Endokrine orbitopathie: Vergleich der langzeitergebnisse and klassifi-kationen nach radiotherapie. Strahlentherapie and Onkologie 1998; 174:449–456.

    Article  CAS  Google Scholar 

  63. Khan, J.A., J.F. Doane, and M.M. Whitacre. Does decompression diminish the discomfort of severe dysthyroid orbitopathy? Ophthalmic Plastic and Reconstructive Surgery 1995; 11:109–112.

    Article  PubMed  CAS  Google Scholar 

  64. Fatourechi, V., J.A. Garrity, G.B. Bartley, E.J. Bergstrahl, and C.A. Gorman. Orbital decompression in Graves’ ophthalmopathy associated with pretibial myxedema. Journal of Endocrinological Investigation 1993; 16:433–437.

    PubMed  CAS  Google Scholar 

  65. Fatourechi, V., J.A. Garrity, G.B. Bartley, E.J. Bergstralh, L.W. DeSanto, and C.A. Gorman. Results of transantral orbital decompression preformed primarily for cosmetic indications. Ophthalmology 1994; 101:938–942.

    PubMed  CAS  Google Scholar 

  66. Fatourechi, V., E.J. Bergstralh, J.A. Garrity, G.B. Bartley, C.W. Beatty, K.P. Offord, and C.A. Gorman. Predictors of response to transantral orbital decompression in severe Graves’ ophthalmopathy. Mayo Clinic Proceedings 1994; 69:841–848.

    PubMed  CAS  Google Scholar 

  67. Garrity, J.A., V. Fatourechi, E.J. Bergstralh, G.B. Bartley, C.W. Beatty, L.W. DeSanto, and C.A. Gorman. Results of transantral orbital decompression in 428 patients with severe Graves’ ophthalmopathy. American Journal of Ophthalmology 1993; 116:533–547.

    PubMed  CAS  Google Scholar 

  68. Tjon, F., M. Sang, P. Knegt, R. Wijngaarde, R. Poublon, E. van der Schans, and E. Krenning. Transantral orbital decompression for Graves’ disease. Clinical Otolaryngology 1994; 19:290–294.

    Article  PubMed  CAS  Google Scholar 

  69. Olver, J.M. Botulinum toxin. A treatment of overactive cor ugator supercilii in thyroid eye disease. British Journal of Ophthalmology 1998; 82:528–533.

    Article  PubMed  CAS  Google Scholar 

  70. Kane, R.L., M. Maciejweski, and M. Finch. The relationship of patient satisfaction with care and clinical outcomes. Medical Care 1997; 35:714–730.

    Article  PubMed  CAS  Google Scholar 

  71. Streiner, D.L., and G.R. Norman. Health measurement scales. A practical guide to their development and use. Oxford University Press, New York, 1989.

    Google Scholar 

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Authors and Affiliations

  1. Clinical, Epidemiology and Biostatistics and the University of Amsterdam, Academic Medical Center, Meibergdreef 9, Amsterdam, NL-l105 AZ, The Netherlands

    C. B. Terwee & Professor Martin Gerding

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  1. C. B. Terwee
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  2. Professor Martin Gerding
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  1. Division of Endocrinology, Department of Internal Medicine, Mayo Clinic and Foundation, Rochester, Minnesota, USA

    Rebecca S. Bahn

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Terwee, C.B., Gerding, M. (2001). Quality of Life Measurement in Patients with Graves’ Ophthalmopathy. In: Bahn, R.S. (eds) Thyroid Eye Disease. Endocrine Updates, vol 14. Springer, Boston, MA. https://doi.org/10.1007/978-1-4615-1447-3_10

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