Medical Issues in Adults with Rett Syndrome–A National Survey

• Objectives: To examine main health issues in a population of females with Rett syndrome, with a focus on individuals aged 36 or older. Methods: A national survey including 85 females, divided into a younger (1–20years), a middle (21–35years) and an older group (36–66years). Data include clinical examination, medical records and parental interviews. Prevalences of six main medical issues (scoliosis, ambulation, growth, respiration, gastrointestinal dysmobility and epilepsy) and severity scores in the three groups were compared. Results: Mean severity scores were 11.8, 15.1 and 13.7 (from younger to older), and the difference between the younger and the middle group was significant. No other major significant prevalence differences were observed. Conclusions: Most main medical issues in Rett syndrome continued to be a major concern in adulthood, but health did not seem to decline with increasing age. The results emphasize the need for clinical follow-up throughout adulthood. © 2019, © 2019 Taylor & Francis Group, LLC.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Medicinska och farmaceutiska grundvetenskaper -- Neurovetenskaper (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Basic Medicine -- Neurosciences (hsv//eng)

Nyckelord

adulthood

ageing

clinical management

morbidity

Rett syndrome

adolescent

adult

aged

aging

Article

body growth

body mass

breathing

child

clinical examination

comparative study

cross-sectional study

disease severity

epilepsy

female

functional status

gastrointestinal motility disorder

groups by age

health survey

human

interview

major clinical study

medical record

motor performance

Norway

parent

population research

prevalence

priority journal

scoliosis

walking

Publikations- och innehållstyp

ref (ämneskategori)

art (ämneskategori)