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Health and Quality of Life Outcomes

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Open Access 01-12-2008 | Research

Evaluation of quality of life and description of the sociodemographic state in adolescent and young adult patients with phenylketonuria (PKU)

Authors: Eva Simon, Martin Schwarz, Judith Roos, Nico Dragano, Max Geraedts, Johannes Siegrist, Gudrun Kamp, Udo Wendel

Published in: Health and Quality of Life Outcomes | Issue 1/2008

Abstract

Background

Normal intellectual and personal development can be expected in early-diagnosed and treated PKU patients. Aim of the study was to analyse quality of life and social status, which are important parameters for an overall estimation of success of treatment apart from intellectual outcome in adult PKU patients.

Methods

67 patients completed a questionnaire on quality of life and social status. Data was compared to the German census on an age matched control collective.

Results

Quality of life measured with the Profile of Quality of Life in the Chronically Ill (PLC) revealed mean values for capacity of performance in the patient group in the same range as in the control collective.

The analysis of the social state of PKU patients revealed a tendency towards lower or delayed autonomy, and a low rate of forming normal adult relationships in which to have children. Schooling and professional career corresponded approximately to the control collective.

Conclusion

Though every chronic disorder must be regarded as restraining, it shows that PKU does not preclude healthy emotional adjustment when the disease is diagnosed early and treated well.

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Title: Evaluation of quality of life and description of the sociodemographic state in adolescent and young adult patients with phenylketonuria (PKU)
Authors: Eva Simon
Martin Schwarz
Judith Roos
Nico Dragano
Max Geraedts
Johannes Siegrist
Gudrun Kamp
Udo Wendel
Publication date: 01-12-2008
Publisher: BioMed Central
Published in: Health and Quality of Life Outcomes / Issue 1/2008
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/1477-7525-6-25

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Evaluation of quality of life and description of the sociodemographic state in adolescent and young adult patients with phenylketonuria (PKU)

Abstract

Background

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

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