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

Abstract

To assess the impairment of quality of life (QoL), evaluated by the acromegaly QoL (AcroQoL) questionnaire, in patients with controlled and uncontrolled acromegaly. Cross-sectional evaluation of AcroBel, a national observational registry of acromegalic patients newly diagnosed or in follow-up. Disease perception by the patients was evaluated by the disease-specific signs and symptoms score (SSS) and QoL was assessed by the AcroQoL questionnaire. Hormonal status was determined by central measurements of GH and IGF-I. Patients (n = 291) had a median GH of 1.43 mug/l (0.65-3.03; IQR), a median IGF-I of 231 mug/l (150-367), and a mean IGF-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. 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 AcroQoL and biochemical markers of disease activity.