Lost in transition:

Autor(en)

Michael Freilinger, Lisa Schoberth, R. Jagsch, Astrid Novak

Abstrakt

Aim: Rett syndrome is a rare neurological disorder mainly affecting girls. Since
the first description by Andreas Rett in 1966 in Vienna beside the genetic
etiology, clinical knowledge and expertise improved dramatically and increased
the life span of these women with severe disabilities. Therefore transitional
processes from paediatric to adult medical and social health care services are
noticeably required. The study examined the health-related quality of life and
surveyed the conditions of transition of patients with Rett syndrome. Another
objective was the verification of the Caregiver Priorities and Child Health Index
of Life with Disbilities Questionnaire (CPCHILD) as an appropriate instrument
for assessing the quality of life of this patient group. Method: Specific clinical
aspects of Rett syndrome, health-related quality of life and transition facts and
wishes were assessed by parents of 43 patients aged from early childhood to
adulthood. Results: Influencing factors on quality of life and key aspects of the
transition process will be presented and discussed. Conclusion: Our results
could help to discuss, implement or improve transition processes also in other
patient groups with intellectual disabilities.

Organisation(en)

Institut für Klinische und Gesundheitspsychologie

Externe Organisation(en)

Medizinische Universität Wien

Journal

Journal of Applied Research in Intellectual Disability

Band

27

Seiten

309-309

Anzahl der Seiten

1

ISSN

1360-2322

Publikationsdatum

07-2014

Peer-reviewed

Ja

ÖFOS 2012

501010 Klinische Psychologie, 302052 Neurologie

Link zum Portal

https://ucrisportal.univie.ac.at/de/publications/50702a09-932c-4fc4-b869-f44a5f5fd425