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      Quality of Life in Acromegaly

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          Abstract

          Available disease-specific questionnaires like the Acromegaly Quality of Life questionnaire have confirmed that quality of life (QoL) is impaired in acromegaly, especially in active disease. Successful therapy improves QoL, but it may not normalize completely even after endocrine cure; furthermore, there is not always a correlation between growth hormone (GH) and insulin-like growth factor 1 and subjective health perception of QoL. Appearance is the dimension most affected and has the highest impact on the patient's QoL. Worse QoL is associated with the presence of musculoskeletal pain, headache (if only medical therapy, not surgery, has been provided), having required treatment with radiotherapy, being older, of female gender, with a longer disease duration, coexisting diabetes mellitus, a higher BMI or becoming GH deficient after treatment for acromegaly.

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          Most cited references41

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          Interpreting patient-reported outcome results: US FDA guidance and emerging methods.

          Sheri E Fehnel, Deborah McLeod, B. Martin … (2011)
          In recent years, the US FDA has become more critical of instruments used to measure patient-reported outcomes (PROs) in clinical trials. To facilitate decisions related to the approval of drugs, labels and promotional claims based on PROs, the FDA created the Study Endpoints and Label Development (SEALD) group. SEALD has developed a PRO guidance related to the use of PRO measures used to support drug approvals and label claims, including recommendations for establishing thresholds for meaningful change at the individual level (i.e., defining a responder). This article examines in detail the FDA-recommended methodology for defining a responder and analyzing responder-based PRO measure results. We also present other responder analysis approaches for consideration in furthering the precision and interpretation of this methodology.
          Article 0 comments Cited 91 times – based on 0 reviews     Review now
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            The Nottingham health profile: Subjective health status and medical consultations

            Sonja M. Hunt, S.P. McKenna, J McEwen … (1981)
            Article 0 comments Cited 75 times – based on 0 reviews     Review now
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              Quality of life in acromegalic patients during long-term somatostatin analog treatment with and without pegvisomant.

              Richard Feelders, Rudd ter Meulen, Guido De Wert … (2008)
              The objective of the study was to assess whether weekly administration of 40 mg pegvisomant (PEG-V) improves quality of life (QoL) and metabolic parameters in acromegalic patients with normal age-adjusted IGF-I concentrations during long-acting somatostatin analog (SSA) treatment. This was a prospective, investigator-initiated, double blind, placebo-controlled, crossover study. Twenty acromegalic subjects received either PEG-V or placebo for two consecutive treatment periods of 16 wk, separated by a washout period of 4 wk. Efficacy was assessed as change between baseline and end of each treatment period. QoL was assessed by the Acromegaly Quality of Life Questionnaire (AcroQoL) and the Patient-Assessed Acromegaly Symptom Questionnaire (PASQ). The AcroQoL (P = 0.008) and AcroQoL physical (P = 0.002) improved significantly after PEG-V was added. The addition of PEG-V also significantly improved the PASQ (P = 0.038) and the single PASQ questions, perspiration (P = 0.024), soft tissue swelling (P = 0.036), and overall health status (P = 0.035). No significant change in Z-score of IGF-I (P = 0.34) was observed during addition of PEG-V. Transient liver enzyme elevations were observed in five subjects (25%). Improvement in quality of life was observed without significant change in IGF-I after the addition of 40 mg pegvisomant weekly to monthly SSA therapy in acromegalic patients who had normalized IGF-I on SSA monotherapy. These data question the current recommendations in how to assess disease activity in acromegaly. Moreover, the findings question the validity of the current approach of medical treatment in which pegvisomant is used only when SSA therapy has failed to normalize IGF-I.
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                Author and article information

                Journal
                Journal ID (publisher-id): NEN
                Journal ID (nlm-ta): Neuroendocrinology
                Journal ID (doi): 10.1159/issn.0028-3835
                Title: Neuroendocrinology
                Publisher: S. Karger AG
                ISBN: 978-3-318-05837-6
                ISBN: 978-3-318-05838-3
                ISSN (Print): 0028-3835
                ISSN (Electronic): 1423-0194
                Publication date Subscription-year: 2016
                Publication date (Print): February 2016
                Publication date (Electronic): 05 February 2015
                Volume: 103
                Issue: 1
                Pages: 106-111
                Affiliations
                aEndocrinology/Medicine Departments, Hospital Sant Pau, Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBER-ER, Unidad 747), ISCIII, IIB-Sant Pau, and bFacultad de Farmacia, Universitat de Barcelona, Barcelona, and cUniversitat Autònoma de Barcelona (UAB), Bellaterra, Spain; dEvidera, London, UK
                Author notes
                *S.M. Webb, Hospital Sant Pau, Pare Claret 167, ES-08025 Barcelona (Spain), E-Mail swebb@santpau.cat
                Article
                Publisher ID: 375451 Other ID: Neuroendocrinology 2016;103:106-111
                DOI: 10.1159/000375451
                PubMed ID: 25661974
                SO-VID: 5dc704fa-1ecd-4188-a837-a7a896c3243c
                Copyright © © 2015 S. Karger AG, Basel
                License:

                Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

                History
                Date received : 06 October 2014
                Date accepted : 22 January 2015
                Page count
                References: 46, Pages: 6
                Categories
                Subject: At the Cutting Edge

                ScienceOpen disciplines: Endocrinology & Diabetes,Neurology,Nutrition & Dietetics,Sexual medicine,Internal medicine,Pharmacology & Pharmaceutical medicine
                Keywords: Quality of life,Acromegaly,Acromegaly Quality of Life questionnaire,AcroQoL
                Data availability:
                ScienceOpen disciplines: Endocrinology & Diabetes, Neurology, Nutrition & Dietetics, Sexual medicine, Internal medicine, Pharmacology & Pharmaceutical medicine
                Keywords: Quality of life, Acromegaly, Acromegaly Quality of Life questionnaire, AcroQoL

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