Health-related quality of life in acromegalic subjects : data from AcroBel, the Belgian Registry on acromegaly

Objective: To assess the impairment of quality of life (QoL), evaluated by the acromegaly QoL (AcroOoL) questionnaire, in patients with controlled and uncontrolled acromegaly. Design: Cross-sectional evaluation of AcroBel, a national observational registry of acromegalic patients newly diagnosed or in follow-up. Methods: Disease perception by the patients was evaluated by the disease-specific signs and symptoms score (SSS) and QoL was assessed by the AcroOoL questionnaire. Hormonal status was determined by central measurements of GH and IGF-I. Results: Patients (n = 291) had a median GH of 1.43 mu g/l (0.65-3.03; IQR), a median IGF-I of 231 mu g/l (150-367), and a mean 1GF-I z-score of + 1.91 (S.D. 2.21). The AcroQoL total score in the whole group was 67.1 (51.1-78.4), with a score of 65.6 (43.8-78.1.) for the physical dimension, 67.9 (53.6-80.4) for the psychological dimension, 78.6 (64.3-89.3) for personal relations and 57.1 (39.3-75) for appearance. The median SSS was 3 (1-5). There was a negative correlation between both questionnaires (r=-0.478; P < 0.001). There was no correlation between AcroQoL score and biochemical markers of disease activity. When subdividing patients into groups of biochemical control according to GH and IGF-I levels, no difference could be established for either SSS or AcroQoL scores. Conclusions: The AcroQoL, results from the AcroBel registry confirm the marked impairment of the patients' QoL, especially in relation with appearance. A negative correlation between AcroQoL and SSS was confirmed. There was, however, no correlation between AcroOoL and biochemical markers of disease activity.