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Quality of Life (QOL) in Patients with Acromegaly Is Severely Impaired: Use of a Novel Measure of QOL: Acromegaly Quality of Life Questionnaire

Department of Endocrinology (S.V.R., S.M.S., P.J.T.), Christie Hospital, Manchester M20 4BX, United Kingdom; Hospital Sant Pau (S.M.W.), Autonomous University of Barcelona, E-08025 Barcelona, Spain; Spanish Group for the Study of Methodology in Clinical Research (L.P.), 28108 Madrid, Spain; and Health Outcomes Research Europe Group (X.B.), 08201 Barcelona, Spain

Address all correspondence and requests for reprints to: Peter J. Trainer, Department of Endocrinology, Christie Hospital, Wilmslow Road, Manchester M20 4BX, United Kingdom. E-mail: peter.trainer{at}man.ac.uk.

Acromegaly Quality of Life Questionnaire (AcroQoL) is a new disease-generated quality of life (QOL) questionnaire comprising 22 questions covering physical and psychological aspects of acromegaly and subdivided into "appearance" and "personal relations" categories. We have performed a cross-sectional study of QOL in 80 patients [43 male (mean age, 54.2 yr; range, 20–84); median GH, 0.93ng/ml (range, <0.3 to 23.7); IGF-I, 333.1 ng/ml (range, 47.7–899)] with acromegaly. In addition to AcroQoL, patients completed three generic QOL questionnaires: Psychological General Well-Being Schedule (PGWBS), EuroQol, and a signs and symptoms score (SSS). All three generic questionnaires confirmed impairment in QOL [mean scores: PGWBS, 69.6; EuroQol, visual analog scale, 66.4 (range, 20–100) and utility index, 0.7 (range, –0.07 to 0.92); and SSS, 12 (range, 0–27)]. There was no correlation between biochemical control and any measure of QOL. AcroQoL (57.3%; range, 18.2–93.2) correlated with PGWBS (r = 0.73; P < 0.0001); and in patients with active disease, AcroQoL-physical dimension correlated with SSS (r = –0.67; P < 0.0003). In all questionnaires, prior radiotherapy was associated with impaired QOL. In conclusion, these data underline the marked impact that acromegaly has on patients’ QOL and provide the first evidence validating AcroQoL against well-authenticated measures of QOL. This indicates the potential of AcroQoL as a patient-friendly measure of disease activity.

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