Prevalence and associated features of depression in women with Rett syndrome.
One in seven women with Rett syndrome screened positive for depression—watch for lethargy and social withdrawal.
01Research in Context
What this study did
van Timmeren et al. (2016) asked caregivers about mood in adult women with Rett syndrome. They used a short yes-or-no depression screen that works for people who cannot speak. Caregivers answered for 14 women living in the United Kingdom.
What they found
Two of the 14 women screened positive for depression. That is about one in seven. The same women also showed more daytime lethargy and social withdrawal than the others. No woman had a prior depression diagnosis.
How this fits with other research
Doughty et al. (2002) surveyed carers of 91 adult women with Rett syndrome and found lower irritability and hyperactivity than in other adults with intellectual disability. van Timmeren et al. (2016) now show that quiet behavior can mask depression, not just good adjustment. The two studies together warn us that "calm" may mean "sad."
Clarkson et al. (2017) and Ward et al. (2021) proved girls with Rett can reveal inner life through eye-gaze tasks. van Timmeren et al. (2016) used caregiver report instead, but all three papers share the same goal: find what the person cannot say out loud.
Gomathi et al. (2020) reviewed 70 drugs for Rett and found none ready for clinic. Until medicine catches up, careful behavioral screening like van Timmeren et al. (2016) is our best tool.
Why it matters
If you work with women who have Rett syndrome, treat social withdrawal and daytime lethargy as red flags. Ask caregivers two quick mood questions and refer positives to psychiatry. Early depression care can lift quality of life without waiting for new drugs.
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02At a glance
03Original abstract
BACKGROUND: Little is known about depression among women with Rett syndrome (RTT) despite recent advances in knowledge about RTT. In this study, we aimed to establish the prevalence of depression among women with RTT as identified by a screening telephone interview and to explore the clinical factors associated with this. METHODS: The study employed the cross-sectional analysis of data from telephone interviews with carers of 56 women with RTT, using validated questionnaires for assessing mental health problems, challenging behaviour and RTT severity. RESULTS: Scores on the mental health assessment reached the affective/neurotic threshold in eight cases (14.3%). No significant differences were found between those reaching the threshold and those who did not in terms of severity of RTT phenotype, health problems or social circumstances. There was a significant association between screening identified depression and higher lethargy and social withdrawal. CONCLUSIONS: Screening identified depression was found among a sizeable minority of women with RTT. Further investigation is needed to establish a clinically validated prevalence of depression among this group and to identify behavioural features that would lead to prompt psychiatric assessment.
Journal of intellectual disability research : JIDR, 2016 · doi:10.1111/jir.12270