Abstract
Several studies have shown that growth hormone deficiency in adults leads to poor well-being and other clinical consequences, and that these improve when the hormone is replaced. However, the studies employed generic measures of health status that miss important aspects of the patients' experience and that have inadequate reliability and responsiveness. This paper describes the European development and testing of the Quality of Life–Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA), a condition-specific quality of life measure for use in clinical trials and for the routine monitoring of patients. The instrument was produced in five languages; English, Swedish, Italian, German and Spanish. Each language version is shown to have good reliability, internal consistency and construct validity. The QoL-AGHDA is currently included in an international database monitoring the long-term efficacy and safety of growth hormone replacement therapy and in clinical trials in a number of countries.
Similar content being viewed by others
References
Littley MD, Shalet SM, Beardwell CG, Ahmed SR, Applegate G, Sutton ML. Hypopituitarism following external radiation therapy for pituitary tumours in adults. Quarterly Journal of Medicine 1989; 70: 145–160.
Bengtsson B-AÊ. The consequences of growth hormone deficiency in adults. Acta Endocrinologica 1993; 128(Suppl 2): 2–5.
Rudman D, Kutner M, Rogers C. Impaired growth hormone secretion in the adult population. Relation to age and adiposity. Journal of Clinical Investigation 1981; 67: 1361–1369.
Salomon S, Cuneo R, Hesp R, Soènksen P. Growth hormone deficiency in adults. Acta Paediatrica. Scan-dinavica 1989; 356(suppl): 69.
Blizzard R, Joyce S, Mitchell T, Johanson A, Libber S, Plotnick L, Migeon C. Psychosocial impact of long-term growth hormone therapy. In: Raita S, Tolman R, eds, Human Growth Hormone. New York: Plenum 1986: p. 93.
Hunt SM, McEwen J, McKenna SP. Measuring Health Status. London: Croom Helm 1986.
Dupuy H. The Psychological General Well-Being In-dex. In: Wenger N, ed, Assessment of Quality of Life in Clinical Trials of Cardiovascular Therapies. New York: Le Jacq, 1984: p. 170.
McKenna SP, Hunt SM. The General Well-Being In-dex: adapting and retesting an American measure for use in the United Kingdom. British Journal of Medical Economics 1992; 4: 41–50.
BjoÈ rk S, Jonsson B, Westphal O, Levin J-E. Quality of life of adults with growth hormone deficiency: a con-trolled study. Acta Paediatrica. Scandinavica 1989; 356 (suppl): 55–59.
Rose n T, Wire n L, Wilhemsen L, Wiklund I, Bengtsson B-AÊ. Decreased psychological well-being in adult pa-tients with growth hormone deficiency. Clinical Endo-crinology 1994; 40: 111–116.
McGauley G. Quality of life assessment before and after growth hormone treatment in adults with growth hormone deficiency. Acta Paediatrica Scandinavica 1989; 356(Suppl): 70–72.
Whitehead HM, Boreham C, McIlrath EM, Sheridan B, Kennedy L, Atkinson AB, Hadden DR. Growth hormone treatment of adults with growth hormone de-ficiency: results of a 13-month placebo controlled cross-over study. Clinical Endocrinology 1992; 36: 45–52.
Bengtsson B-AÊ, Ede n S, LoÈ nn L. Treatment of adults with growth hormone deficiency with recombinant human growth hormone. Journal of Clinical Endocri-nology and Metabolism 1993; 76: 309–17.
MaÊ rdh G, Lundin K, Borg G, Jonsson B, Lindeberg A. Growth hormone replacement therapy in adult hypo-pituitary patients with growth hormone deficiency: combined data from 12 European placebo-controlled clinical trials. Endocrinology and Metabolism 1994; 1(Suppl): 43–49.
NHS. National Health Service Review. Working Paper No 6 Medical Audit. London: HMSO, 1989.
CCOHTA (Canadian Coordinating Office for Health Technology Assessment). Guidelines for economic evaluation of pharmaceuticals: Canada. 2nd edn. Ot-towa: CCOHTA, 1997.
More T. Utopia. London: Chatto & Windus, 1908.
Hunt SM, McKenna SP. The QLDS: A scale for the measurement of quality of life in depression. Health Policy 1992; 22: 307–319.
HoÈ rnquist JO. The concept of quality of life. Scandi-navian Journal of Social Medicine 1982; 10: 57–61.
de Jong Z, van der Heijde D, McKenna SP, Whalley D. The reliability and construct validity of the RAQoL: A rheumatoid arthritis-specific quality of life instrument. British Journal of Rheumatology (in press).
Weiner E, Stewart B. Assessing Individuals. Boston: Little Brown, 1984.
McDowell I. Newell C. Measuring Health: a Guide to Rating Scales and Questionnaires. Oxford: Oxford University Press, 1987.
McKenna SP, Koppeschaar HPF, Zelissen PMJ, Snel YEM, Whalley D, Doward LC. The impact of re-placement GH on the quality of life of patients: Results of a clinical trial in the Netherlands. Endocrinology and Metabolism 1997; 4(Suppl B): 167.
McKenna SP, Vazquez JA, Pico A, Escobar F, Torres E, Ulied A, Whalley D, Doward LC. The quality of life of adult GHD patients in Spain and the effects of re-placement therapy with Genotropin. Endocrinology and Metabolism 1997; 4(Suppl B): 168.
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
McKenna, S.P., Doward, L.C., Alonso, J. et al. The QoL-AGHDA: An instrument for the assessment of quality of life in adults with growth hormone deficiency. Qual Life Res 8, 373–383 (1999). https://doi.org/10.1023/A:1008987922774
Issue Date:
DOI: https://doi.org/10.1023/A:1008987922774