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

Abstract

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.

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

“…Despite a satisfactory overall degree of biochemical control in our study group (22), QoL evaluated by AcroQoL was significantly impaired, confirming previous studies (14,23). While biochemical or radiological markers of the disease and mortality rate have the opportunity of being measurable, it is obvious that from the patient's perspective well-being is an important outcome.…”

“…This is the first study to report on the use of AcroQoL in a nationwide registry with controlled and uncontrolled patients. Median AcroQoL total and subscores are comparable with those reported earlier for acromegalic patients in remission (5,7,14,20,21), and higher than that in active acromegaly (5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20).…”

“…Reference values are not yet available. Moreover, in cross-sectional studies, AcroQoL results have been shown not to relate to biochemical measures of disease control (5,14). However, in a 6-month follow-up study, AcroQoL was responsive to changes following medical or surgical treatment, and improvement in the global score of AcroQoL was related to a global improvement in HRQoL (12).…”

“…In patients with stable acromegaly, no difference was observed on retesting at 1 month, thus demonstrating a good test-retest reliability (13) and internal consistency. Validity has been established in several studies (5,7,14). Results of AcroQoL were also shown to be consistent across different European countries (15).…”

Quality of life is impaired in association with the need for prolonged postoperative therapy by somatostatin analogs in patients with acromegaly

“…Quality of life (QoL) is reported to be severely impaired in patients with acromegaly, measured both by general health-related and by disease-specific questionnaires (8,9). Patients with biochemically controlled acromegaly have significantly better QoL than patients with persistent disease (10,11,12,13).…”