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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.
| Abstract |
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| Introduction |
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The Acromegaly Quality of Life Questionnaire (AcroQoL) was designed with the aim of creating a simple and valid instrument to assess QOL in people with acromegaly (8). It is intended to provide a cost-effective means to assess self-perceived status and to allow evaluation of interventions, in longitudinal research, and to identify patients who require further treatment. It was developed by semistructured, in-depth interviews of patients and endocrinologists to identify perceived domains of impact of acromegaly on QOL. Domains identified were: physical and psychological function, social and daily activities, symptoms, cognition, general health perception, sleep, sexual function, pain, energy, and body image. The items fall into two categories of physical and psychological function, the latter category being subdivided into areas addressing appearance and personal relationships. These data were pared down to 22 questions with five possible responses scoring 15 (maximum score, 110). Results are quoted as a percentage, with lower scores equating to poorer QOL. Originally developed in Spanish, AcroQoL has been translated into 12 languages (9).
The intention of this study was to assess the QOL of patients with acromegaly using well-authenticated generic measures of QOL and, for the first time in English patients, AcroQoL.
| Patients and Methods |
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Eighty English-speaking patients [43 male; mean age, 54.2 yr (range, 2084)] with acromegaly, attending for routine care at Christie Hospital, participated in this study (Table 1
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Questionnaires
Patients completed four questionnaires.
The Psychological General Well-Being (PGWB) Index. The PGWB Index is a 22-item questionnaire addressing both positive and negative affective states. Each item has six questions, answered on a scale of 05; the maximum score is 110, reflecting perfect QOL. The items divide into six subscales: anxiety, depressed mood, positive well-being, self-control, general health, and vitality. This questionnaire has been shown to have good validity, reliability, and internal consistency (10).
The SSS. The SSS is a disease-specific tool that consists of five questions, scoring 08, considering headache, perspiration, joint pain, fatigue, and soft tissue swelling. The maximum score of 40 is indicative of severe signs and symptoms.
AcroQoL. AcroQoL comprises 22 questions, each having five possible responses scored 15, the maximum score of 110 reflecting best possible QOL, and quoted as a percentage. The 22 items break down into two categories, physical and psychological function, the latter being further subdivided into areas addressing appearance and personal relationships.
EuroQol (EQ-5D). EQ-5D was designed specifically to complement other QOL instruments and generate a cardinal index of health (11, 12, 13). Described as a non-disease-specific tool, it has been well validated, and normative data exist. Divided into two parts, comprising a five-point CRS (category rating scale) addressing mobility/self-care/usual activities/pain and discomfort/anxiety and depression. One response from three options is selected for each of the five points. Two hundred forty-three permutations are possible, and the utility index (UI) is calculated using a regression equation (range, 0.59 to 0.92). Part 2 is a self-rated visual analog scale (VAS), a 20-cm thermometer scaled 0 (worst imaginable health state) to 100 (best imaginable health state).
Assays
Serum IGF-1 and GH were measured using the Nichols Advantage Method (Nichols Institute Diagnostics, Heston, Middlesex, UK), with an IGF-I intraassay CV of 7.4, 5.7, and 4.5% at 49, 229, and 493 µg/liter, respectively, and a GH intraassay CV of 7, 8.7, and 8.6% at 2.8, 7.0, and 13.3 ng/ml, respectively. GH was originally measured in milliunits per liter, and a conversion factor of 3 was used to convert to nanograms per milliliter.
Statistics
Statistical analysis was with SPSS/S Plus software packages. Linear regression was used to investigate the relationships between normally distributed parameters, and Spearman rank order correlation for nonparametric data. Statistical significance was set at the 5% level (P < 0.05).
| Results |
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| Discussion |
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Confirmation of the severe impairment of QOL in acromegaly comes from comparison between the PGWB scores from our patients with normative data from population surveys, with the subdomain scores for vitality and general health being most impaired (20, 21, 22) (Table 2
). Consistent with these findings was the impaired EQ-5D UI score of 0.7, compared with the population-based mean of 0.81 (23). These generic measures of QOL allow comparison of the QOL of patients with acromegaly to that of patients with other chronic disease. In our patients, the EQ-5D VAS score was 0.66, compared with 0.79 in asthmatics, 0.69 in angina, and 0.6 in patients with osteoarthritis (23, 24). A measure of the severity of the impairment of QOL of patients with acromegaly is that the mean PGWB score in our patients is worse than in any published series of adults with GHD, except that reported by Murray et al. (25), who specifically selected their cohort based on severely impaired QOL at interview (Fig. 3
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As a disease-generated measure of QOL, no population-derived control data are available for AcroQoL, but the close correlations demonstrated between AcroQoL scores and those of the generic tools PGWB and EQ-5D reinforce the concept that AcroQoL is a valid measure of disease activity, with the advantages of being focused on the areas of concern for patients with acromegaly and being patient friendly.
SSS focus on the most reversible aspects of acromegaly and, for that reason, have been used in many interventional studies; but their limited focus means that they are not measures of QOL. Furthermore, whereas therapy studies show an improvement in SSS that coincides with a reduction in GH and IGF-I, the changes in SSS do not correlate with the changes in GH and IGF-I. In other words, it is not the patients with the greatest biochemical improvement that experience the greatest improvement in SSS. For these reasons, SSS are of very limited value as measures of well-being in patients with acromegaly, either in a cross-sectional or longitudinal study.
This study was cross-sectional in design, with acromegaly having been diagnosed, on average, 12.7 yr earlier. A wide spectrum of disease activity existed among the patient cohort, although the median GH and IGF-I levels were 0.93 ng/ml and 333.1 ng/ml, respectively, i.e. virtually within the biochemical goals for therapy set out in the consensus statement on the treatment of acromegaly (14). A total of 34.2% of the patients had both GH and IGF-I levels within target; but despite this degree of biochemical control, measured QOL was significantly impaired with all generic well-being tools.
No relationship existed between either GH or IGF-I and any measure of QOL, and there was no difference in QOL score between those with active and inactive disease. The absence of a relationship between biochemical parameters and QOL should not be a surprise. Despite extensive investigation over the last decade of QOL in adults with GHD, and impairment of QOL being an indication for GH treatment, there have been no reports of a relationship between either GH or IGF-I levels and QOL at baseline, or during treatment of patients with GHD. The potential for observing a relationship between biochemical parameters and QOL in our patients with acromegaly is diminished by the relatively satisfactory GH and IGF-I levels. Many factors, other than circulating levels of GH and IGF-I, are likely to impact on QOL. In this study, stepwise forward linear regression identified previous radiotherapy as being associated with a significant worsening of QOL; but no effect of gender, age, years from diagnosis, or presence of hypopituitarism was seen. The relationship between prior radiotherapy and impairment of QOL in patients with acromegaly requires further exploration and does not prove radiotherapy to be the cause of impaired QOL because, for example, the patients treated with radiotherapy were diagnosed, on average, 11 yr previously, compared with 4 yr for those not treated with radiotherapy, and referral patterns for radiotherapy have evolved in the last decade. Interestingly, Page et al. (20) found the PGWB scores to be lower in patients with hypopituitarism who had received radiotherapy, compared with those who had not. In both studies, it is probable that it was the patients with larger and more aggressive tumors that were treated with radiotherapy.
In summary, all measures of QOL have been demonstrated to be significantly impaired in this cohort of patients with acromegaly, and to be worse than most adults with severe GHD. The close correlation of total score and the subsection for vitality with robust generic QOL tools confirms the validity of AcroQoL as a measure of disease activity. At this juncture, it would be premature to conclude that radiotherapy is responsible for impairing QOL in patients with acromegaly, and further studies are required to assess the causal factors. Prospective studies are on-going to see whether favorable changes in biochemical disease activity are reflected in improvement in AcroQoL score. The long-term goal of measurement of QOL is to allow selection of the modes of therapy that not only ensure biochemical control but also optimize QOL.
| Acknowledgments |
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| Footnotes |
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Abbreviations: AcroQoL, Acromegaly Quality of Life Questionnaire; GHD, GH deficiency; PGWB, Psychological General Well-Being; PGWBS, PGWB Schedule; QOL, quality of life; SSS, signs and symptoms score(s); UI, utility index(s); VAS, visual analog scale.
Received August 5, 2004.
Accepted February 25, 2005.
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