Quality of life and psychological well-being in GH-treated, adult PWS patients: A longitudinal study

L. Bertella, I. Mori, G. Grugni, Ricardo Pignatti, F. Ceriani, E. Molinari, A. Ceccarelli, A. Sartorio, R. Vettor, C. Semenza

Research output: Contribution to journalArticle

Abstract

Background: Prader-Willi syndrome (PWS) is a congenital alteration of chromosome pair 15. It is characterized by short stature, muscular hypotonia, hyperphagia, obesity, behavioural and emotional disturbances, hypogonadism and partial Growth Hormone (GH) deficiency. The aim of this study was to assess the long-term effect of GH treatment on the psychological well-being and Quality of Life (QoL) in an adult PWS group. Methods: A total of 13 PWS patients, their diagnosis confirmed by genetic tests, and their parents were recruited for this study. The participants were administered the 36-Items Short Form Health Survey (SF-36) and the Psychological General Well-Being Index (PGWBI), for the assessment of QoL and psychological well-being, at the beginning of GH treatment, and at following intervals of 6, 12 and 24months. Modified versions of the same questionnaires were given to the parents. Results: Significant improvement with respect to the baseline was found, on both scales, in the evaluation of both physical and psychological well-being, although the parents'evaluation was less optimistic than that of the patients. Conclusion: Our findings suggest that the amelioration of QoL and psychological status is sustained in patients who continue GH treatment.

Original languageEnglish
Pages (from-to)302-311
Number of pages10
JournalJournal of Intellectual Disability Research
Volume51
Issue number4
DOIs
Publication statusPublished - Apr 2007

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Keywords

  • Growth-hormone therapy
  • Prader-Willisyndrome
  • Psychologicalwell-being
  • Qualityof Life

ASJC Scopus subject areas

  • Genetics
  • Health Professions(all)
  • Rehabilitation
  • Genetics(clinical)
  • Education
  • Neurology
  • Clinical Neurology
  • Psychiatry and Mental health

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