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      Assessment of Health-Related Quality of Life and Patient Satisfaction in Children and Adolescents with Growth Hormone Deficiency or Idiopathic Short Stature – Part 1: A Critical Evaluation of Available Tools

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          The concept of health-related quality of life (HrQoL) reflects the subjective perception of health and includes aspects of well-being and functioning in physical, emotional, mental and social life domains. Nowadays, HrQoL has become a relevant treatment outcome from epidemiological and clinical perspectives and is also broadly employed in health economic analyses. To assess HrQoL generic as well as condition-specific instruments are used. The former are applicable to a wide range of health conditions and aim at measuring HrQoL across different conditions. The latter focus on capturing the impact of a specific disease. Although HrQoL research in adults is now well-advanced, there are still open questions regarding how to assess HrQoL in pediatric conditions, such as short stature. Eight generic (one chronic-generic) and seven condition-specific (one treatment-specific) instruments used in HrQoL research in short stature of youth are described. Additionally, this mini review identifies a need for further research and indicates potential directions.

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          Most cited references21

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          Multi-Attribute Health Status Classification Systems

          Michael Boyle, David H. Feeny, William Furlong … (1995)
          Article 0 comments Cited 68 times – based on 0 reviews     Review now
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            Generic Health-Related Quality-of-Life Assessment in Children and Adolescents

            Jennifer Nickel, Ulrike Ravens-Sieberer, Michael Erhart … (2006)
            Article 0 comments Cited 43 times – based on 0 reviews     Review now
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              Quality of life in pre-adolescence: a 17-dimensional health-related measure (17D).

              I Kaitila, Pirjo S. A. Mäkelä, V Aalberg … (1996)
              Although interest in the health-related quality of life (HRQOL) of children has increased in the last years, validated methods for assessing the HRQOL- and especially the perceived HRQOL-of children have been missing. We introduced a 17-dimensional, illustrated, generic measure of perceived HRQOL (17D) for pre-adolescents, and demonstrated its application to three populations of children aged 8-11 years: (1) 244 normal schoolchildren; (2) 22 patients surviving organ transplantation and (3) 10 patients with genetic skeletal dysplasias. The HRQOL scores and profiles of the patients differed significantly according to the diagnosis, giving support to its construct validity. The reliability of the measure was high: its repeatability coefficient was 95%. As a structured interview of 20-30 minutes, the measurement burden is reasonable. We conclude that the assessment of quality of life of pre-adolescents can and should be based on data collected from the children themselves. Our initial experience indicates that 17D is comprehensive, reliable, and valid.
              Article 0 comments Cited 40 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (publisher-id): HRE
                Journal ID (nlm-ta): Horm Res Paediatr
                Journal ID (doi): 10.1159/issn.1663-2818
                Title: Hormone Research in Paediatrics
                Publisher: S. Karger AG
                ISSN (Print): 1663-2818
                ISSN (Electronic): 1663-2826
                Publication date Subscription-year: 2009
                Publication date (Print): August 2009
                Publication date (Electronic): 18 August 2009
                Volume: 72
                Issue: 2
                Pages: 65-73
                Affiliations
                aInstitute for Medical Psychology, University Hospital Hamburg Eppendorf, Hamburg, and bDepartment of Pediatrics, University of Bonn, Bonn, Germany; cDepartment of Pediatrics and Communicable Diseases, Division of Child Behavioral Health, University of Michigan Medical School, Ann Arbor, Mich., USA; dGothenburg Pediatric Growth Research Center, and eDepartment of Pediatrics, Queen Silvia Children’s Hospital, Växthuset, Gothenburg, fKIMS Medical Outcomes, Pfizer Endocrine Care, Sollentuna, and gDepartment of Pharmacy, Uppsala University, Uppsala, Sweden; hEBT Ophthalmology/Endocrine, Pfizer Ltd., Tadworth, UK
                Article
                Publisher ID: 232158 Other ID: Horm Res 2009;72:65–73
                DOI: 10.1159/000232158
                PubMed ID: 19690423
                SO-VID: a236a666-dc84-4073-b930-2a780710adcb
                Copyright © © 2009 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 : 13 August 2008
                Date accepted : 15 June 2009
                Page count
                Figures: 1, Tables: 1, References: 60, Pages: 9
                Categories
                Subject: Mini Review

                ScienceOpen disciplines: Endocrinology & Diabetes,Neurology,Nutrition & Dietetics,Sexual medicine,Internal medicine,Pharmacology & Pharmaceutical medicine
                Keywords: Growth hormone deficiency,Health-related quality of life,Short stature, idiopathic
                Data availability:
                ScienceOpen disciplines: Endocrinology & Diabetes, Neurology, Nutrition & Dietetics, Sexual medicine, Internal medicine, Pharmacology & Pharmaceutical medicine
                Keywords: Growth hormone deficiency, Health-related quality of life, Short stature, idiopathic

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