Background/Aim: Age- and gender-specific reference values for the quality of life (QoL) measures used in assessing the impact of growth hormone deficiency (GHD) are important. The objective of this study was to develop such data for the QoL-AGHDA instrument for the population of England and Wales and to demonstrate the QoL deficit in patients with GHD. Methods: For the purpose of this study, a questionnaire was developed that contained the EurQoL EQ-5D, QoL-AGHDA, questions recording an individual’s general situation and social functioning, and a self-reported five-point rating scale of general health. The questionnaire was mailed out to a sample of 1,190 individuals drawn from the general population of England and Wales. Corresponding data for 836 patients were retrieved from KIMS (Pfizer International Metabolic Database). The postal survey data were weighted to ensure that they were representative of the general population. Results: The mean weighted QoL-AGHDA scores for the general population were 6.2 and 7.1 for men and women, respectively, compared with 13.6 and 15.7 for patients. For both males and females the differences in mean QoL-AGHDA scores between the general population and patients were statistically significant for all age categories (p < 0.01). In the general population the mean QoL-AGHDA score for each category of self-assessed health status increased progressively, indicating a poorer QoL as health status declined. Conclusions: This study reports QoL-AGHDA normative values for the population of England and Wales and confirms the extent of QoL impairment in patients with GHD in comparison with the general population.

1.
Sanders C, Egger M, Donovan J, Tallon D, Frankel S: Reporting on quality of life in randomized controlled trials: bibliographic study. Br Med J 1998;317:1191–1194.
2.
Fayers PM, Machin D: Preface; in: Quality of life: Assessment, Analysis and Interpretation. Chichester, Wiley, 2000, pp 1–36.
3.
Berger ML, Bingefors K, Hedblom EC, Pashos CL, Torrance GW, Dix Smith M: Health-related quality of life; in Berger ML, Bingefors K, Hedblom EC, Pashos CL, Torrance GW (eds): Health Care, Cost, Quality and Outcomes. Lawrenceville, ISPOR, International Society for Pharmacoeconomics and Outcomes Research, 2003, pp 129–131.
4.
Carroll PV, Christ ER and the members of Growth Hormone Research Society Scientific Committee: Bengtsson B-Å, Carlsson L, Christiansen JS, Clemmons D, Hintz R, Ho K, Laron Z, Sizonenko P, Sönksen PH, Tanaka T, Thorner M: Growth hormone deficiency in adulthood and the effects of growth hormone replacement: a review. J Clin Endocrinol Metab 1998;83:382–395.
5.
Abs R, Bengtsson BÅ, Hernberg-Ståhl E, Monson JP, Tauber JP, Wilton P, Wüster C: GH replacement in 1034 growth hormone deficient hypopituitary adults: demographic and clinical characteristics, dosing and safety. Clin Endocrinol 1999;50:703–713.
6.
Wüster C, Abs R, Bengtsson B-Å, Bennmarker H, Feldt-Rasmussen U, Hernberg-Ståhl E, Monson J, Westberg B, Wilton P: The influence of growth hormone deficiency, growth hormone replacement therapy, and other aspects of hypopituitarism on fracture rate and bone mineral density. J Bone Miner Res 2001;16:398–405.
7.
Raben AS: Clinical use of human growth hormone. N Engl J Med 1962;266:82–86.
8.
Burman P, Deijen JB: Quality of life and cognitive function in patients with pituitary insufficiency. Psychother Psychosom 1998;67:154–167.
9.
Björk S, Jonsson B, Westphal O, Levin JE: Quality of life of adults with growth hormone deficiency: a controlled study. Acta Paediatr Scand Suppl 1989;356:55–59.
10.
McGauley GA, Cuneo R, Salomon F, Sönksen PH: Psychological well-being before and after growth hormone treatment in adults with growth hormone deficiency. Horm Res 1990;33(suppl 4):52–54.
11.
Wallymahmed ME, Foy P, Shaw D, Hutcheon R, Edwards EHT, MacFarlane IA: Quality of life, body composition and muscle strength in adult growth hormone deficiency: the influence of growth hormone replacement therapy up to 3 years. Clin Endocrinol 1997;47:439–446.
12.
Wirén L, Bengtsson B-Å, Johannsson G: Beneficial effects of long-term GH replacement therapy on quality of life in adults with GH deficiency. Clin Endocrinol 1998;48:613–620.
13.
Rosén T, Wirén L, Wilhelmsen L, Wiklund I, Bengtson B-Å: Decreased psychological well-being in adult patients with growth hormone deficiency. Clin Endocrinol 1994;40:111–116.
14.
McKenna SP, Doward LC, Alonso J, Kohlmann T, Niero M, Prieto L, Wirén L: The QoL-AGHDA: an instrument for the assessment of quality of life in adults with growth hormone deficiency. Qual Life Res 1999;8:373–383.
15.
Hunt SM, McKenna SP, Doward LC: Preliminary report on the development of a disease-specific instrument for assessing quality of life of adults with growth hormone deficiency. Acta Endocrinol 1993;128(suppl 2):37–40.
16.
Chrisoulidou A, Kousta E, Beshyah SA, Robinson S, Johnston DG: How much, and by what mechanisms, does growth hormone replacement improve the quality of life in GH-deficient adults? Baillières Clin Endocrinol Metab 1998;12:261–279.
17.
Koltowska-Häggström M, Kind P: Evaluating outcomes in adult growth hormone deficiency (AGHD): the status of quality of life (QoL) measurement in clinical studies. ENDO Abstract Book, P2–320, p 383. Chevy Chase, The Endocrine Society Press, 2003.
18.
Radcliffe DJ, Pliskin JS, Silvers JB, Cuttler L: Growth hormone therapy and quality of life in adults and children. Pharmacoeconomics 2004;22:499–524.
19.
Herschbach P, Henrich G, Strasburger CJ, Feldmeier H, Marin F, Attanasio AM, Blum WF: Development and psychometric properties of a disease-specific quality of life questionnaire for adult patients with growth hormone deficiency. Eur J Endocrinol 2001;145:255–265.
20.
Deijen JB, van der Veen EA: The influence of growth hormone (GH) deficiency and GH replacement on quality of life in GH-deficient patients. J Endocrinol Invest 1999;22:127–136.
21.
Li Voon Chong JSW, Groves T, Foy P, Wallymahmed ME, MacFarlane IA: Elderly people with hypothalamic-pituitary disease and untreated GH deficiency: clinical outcome, body composition, lipid profiles and quality of life after 2 years compared to controls. Clin Endocrinol 2002;56:175–181.
22.
Malik IA, Foy P, Wallymahmed M, Wilding JPH, MacFarlane IA: Assessment of quality of life in adults receiving long-term growth hormone replacement compared to control subjects. Clin Endocrinol 2003;59:75–81.
23.
Page RCL, Hammersley MS, Burke CW, Wass JAH: An account of the quality of life of patients after treatment for non-functioning pituitary tumors. Clin Endocrinol 1997;46:401–406.
24.
Wallymahmed ME, Foy P, MacFarlane IA: The quality of life of adults with growth hormone deficiency: comparison with diabetic patients and control subjects. Clin Endocrinol 1999;51:333–338.
25.
Blum WF, Shavrikova EP, Edwards DJ, Rosilio M, Hartman ML, Marin F, Valle D, van der Lely AJ, Attanasio AF, Strasburger CJ, Henrich G, Herschbach P: Decreased quality of life in adult patients with growth hormone deficiency compared with general populations using the new, validated, self-weighted questionnaire, Questions on Life Satisfaction Hypopituitarism Module. J Clin Endocrinol Metab2003;88:4158–4167.
26.
Rosilio M, Blum WF, Edwards DJ, Shavrikova EP, Valle D, Lamberts SWJ, Erfurth EM, Webb SM, Ross RJ, Chihara K, Henrich G, Herschbach P, Attanasio AF: Long-term improvement of quality of life during growth hormone (GH) replacement therapy in adults with GH deficiency, as measured by questions on Life Satisfaction-Hypopituitarism (QLS-H). J Clin Endocrinol Metab 2004;89:1684–1693.
27.
Rosilio M, Berthezene F, Blum WF, Shavrikova EP, Herschbach P, Henrich G: The quality-of-life questionnaire QLS-H(c): validation of the French language version of the questionnaire in patients with growth hormone deficiency and collection of reference data in the general population. Ann Endocrinol 2004;65:439–450.
28.
Badia X, Lucas A, Sanmarti A, Roset M, Ulied A: One-year follow-up of quality of life in adults with untreated growth hormone deficiency. Clin Endocrinol 1998;49:765–771.
29.
Wirén L, Whalley D, McKenna SP, Wilhelmsen L: Application of a disease-specific, quality-of-life measure (QoL-AGHDA) in growth hormone-deficient adults and a random population sample in Sweden: validation of the measure by Rasch analysis Clin Endocrinol 2000;52:143–152.
30.
Murray RD, Shalet SM: The use of self-rating questionnaires as a quantitative measure of quality of life in adult growth hormone deficiency. J Endocrinol Invest 1999;22:118–126.
31.
National Institute for Clinical Excellence (Nice), Technology Appraisal 64: Human Growth Hormone (Somatotropin) in Adults with Growth Hormone Deficiency. Nice, 2003.
32.
EuroQoL Group: EuroQoL – a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199–208.
33.
Hernberg-Ståhl E, Luger A, Abs R, Bengtsson B-Å, Feldt-Rasmussen U, Wilton P, Westberg B, Monson JP: Healthcare consumption decreases in parallel with improvements in quality of life during GH replacement in hypopituitary adults with GH deficiency. J Clin Endocrinol Metab 2001;86:5277–5281.
34.
Dolan P: Modeling valuations for EuroQol health states. Med Care 1997;35: 1095–1108.
35.
Greiner W, Weijen T, Nieuwenhuizen M, Oppe S, Badia X, Busschbach J, Buxton M, Dolan P, Kind P, Krabbe P, Ohinmaa A, Parkin D, Roset M, Sintonen H, Tsuchiya A, de Charro F: A single European currency for EQ-5D health states; results from a six-country study. Eurn J Health Econ2003;4:222–231.
36.
Hunt SM, McKenna SP: The QLDS: a scale for the measurement of quality of life in depression. Health Policy 1992;22:307–319.
37.
Kind P, Dolan P, Gudex C, Williams AH: Variations in population health status: results from a UK national survey. Br Med J 1998;316:736–741.
38.
Franks P, Gold MR, Fiscella K: Sociodemographics, self-rated health, and mortality in the US. Soc Sci Med 2003;56:2505–2514.
39.
Barkan AL: The ‘Quality of life-assessment of growth hormone deficiency in adults’ questionnaire: can it be used to assess quality of life in hypopituitarism? J Clin Endocrinol Metab 2001;86:1905–1907.
40.
Hürny C, Bernhard J, Gelber RD, Coates A, Castiglione M, Isley M, Dreher D, Peterson H, Goldhirsch A, Senn HJ for the International Breast Cancer Study Group: Quality of life measures for patients receiving adjuvant therapy for breast cancer: an international trial. Eur J Cancer 1992;28:118–124.
41.
Inglehart R, Jacques-Rene R: Aspirations adapt to situations – but why are the Belgians so much happier than the French? A cross-cultural analysis of the subjective quality of life; in Andrews FM (ed): Research on the Quality of Life. Ann Arbor, Institute for Social Research, University of Michigan, 1986, pp 1–56.
42.
Bengtsson B-Å, Abs R, Bennmarker H, Monson JP, Feldt-Rasmussen U, Hernberg-Ståhl E, Westberg B, Wilton P, Wüster C: The effects of treatment and the individual responsiveness to GH replacement therapy in 665 GH-deficient adults. J Clin Endocrinol Metab 1999;54:3929–3936.
43.
Mukherjee A, Monson JP, Jonsson PJ, Trainer PJ, Shalet SM: Seeking the optimal target range for insulin-like growth factor I during the treatment of adult growth hormone disorders. J Clin Endocrinol Metab 2003;88:5865–5870.
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