Quality of Life – a tool to guide decision making in neuroendocrinology – development of AcroQoL

Abstract

With the current medical and surgical treatments available for acromegaly, biochemical disease control and restoration of morbidity and mortality to normal can be achieved in most cases, but patient's preferences and features relevant to individual Health-Related Quality of Life (HRQoL) are often not considered. AcroQoL is a disease-generated, simple questionnaire designed to assess HRQoL in acromegaly. It contains 22 questions that evaluate physical and psychological dimensions (the latter divided into 2 sub-dimensions on appearance and personal relationships) on a 5 possible answer Likert scale which considers the frequency of occurrence (always, most of the time, sometimes, rarely, never) and the degree of agreement with the statement (completely agree, moderately agree, neither agree nor disagree, moderately disagree, completely disagree) as response choices. Answers are transformed to a percentage value, where 100 is the maximal (best) and 0 the minimum (worse) score depicting self-perceived QoL related to acromegaly. Translations into 12 languages are available up to date. Cross-sectional evaluation of HRQoL in patients with acromegaly using generic questionnaires and AcroQoL have shown severe impairment. Active disease, female gender, older age, disease duration, joint symptoms and prior radiotherapy are associated with worse HRQoL. The most affected dimension is appearance and the least personal relations; comparable results have been observed in Spanish, German, Dutch, British and Turkish speaking patients. Patients with active acromegaly show worse score (mean range: 43 to 56) than those in remission (mean range: 65 to 71). In longitudinal studies, we have shown that in patients with controlled, stable acromegaly, no change was observed on retesting at 1 month (65 + 18 versus 66 + 19), demonstrating good test-retest reliability. In patients with active acromegaly, after 6 months of treatment, an improvement in AcroQoL score was observed (56 + 20 to 66 + 18; p<0.01), demonstrating good sensitivity to change. Internal consistency of AcroQoL was good (Cronbach's α >0.7) and we observed a near significant trend between AcroQoL scores and IGF-I SDS (p=0.051), but not with GH levels. However, in 118 controlled Dutch acromegalic patients, a weakly significant correlation with GH (not with IGF-I) was found. Despite biochemical cure, acromegalic patients have a reduced HRQoL when compared to general population, even in patients with biochemically controlled disease, worse than in other chronic conditions like asthma or angina and similar to that observed in osteoarthritis, suggesting that these patients would benefit from an earlier diagnosis, before irreversible signs and symptoms of the disease impair their HRQoL. No large comparative studies are yet available including HRQoL as an outcome measure, although it is currently being evaluated with AcroQoL in clinical practice and several randomised controlled clinical trials for the evaluation of different medical therapy regimes in acromegaly. Thus, it is conceivable that not only biochemical and radiological parameters, but also dimensions that reflect HRQoL deserve to be considered as necessary tools to optimise management strategies in acromegaly.