One-year follow-up of quality of life in adults with untreated growth hormone deficiency

OBJECTIVE The aim of the study was to evaluate the impact on health-related quality of life (HRQoL) in untreated GHD patients using the disease-specif ic Assessment of Growth Hormone Deficiency in Adults (AGHDA) questionnaire. DESIGN AND PATIENTS A cohort of 356 consecutive adult GHD patients, diagnos ed after the age of 18 years, from the endocrinology units of 37 Spanish ho spitals were included over a 6-month period in a longitudinal observational quality-of-life study. In addition, patients' HRQoL scores were compared t o those obtained from a random sample of 963 subjects from the general popu lation recruited by trained interviewers in a 6-month period and matched by age and sex to figures of the 1991 Spanish census. MEASUREMENTS Patients were evaluated at baseline and after 12-months. Socio -demographic and health variables such as age,sex, level of education, inco me level, number of chronic diseases and self-reported health status were r ecorded at baseline and follow-up visits. Patients underwent physical and a nalytical examination and completed the AGHDA questionnaire. A survey inclu ding socio-demographic, self-reported health status and the AGHDA questionn aire was administered at the individuals' homes, RESULTS Mean score for patients at baseline was 9.4 (CI=8.4-10.4) and at 12 months 10 (CI=8.8-11). HRQoL was worse in the case of older patients with a low level of education, lower income levels, reporting having an associat ed chronic disease and poor self-reported health status (P < 0.01). Untreat ed GHD patients maintain or slightly worsen their HRQoL after 12 months of follow-up, with high individual variability. Although AGHDA scores worsened during the observation period, differences were not statistically signific ant. AGHDA mean score in controls was 5.49 (CI=5.27-5.71). Comparison of th e mean AGHDA scores between patients and controls previously standardized b y level of education and age were statistically different (P < 0.01), indic ating that patients declared a worse HRQoL than the general population exce pt for those aged 60-69 years. GHD patients presented a deterioration in HR QoL almost double that of the general population. CONCLUSIONS These results permit comparison of patients' scores against ref erence scores with regard to the desirable effect of treatment. Future use of the AGHDA questionnaire in clinical trials should try to establish a rel ationship between biological and HRQoL changes.