Assessment & Research

Prevalence and associated features of depression in women with Rett syndrome.

Hryniewiecka-Jaworska et al. (2016) · Journal of intellectual disability research : JIDR 2016
★ The Verdict

One in seven women with Rett syndrome screened positive for depression—watch for lethargy and social withdrawal.

✓ Read this if BCBAs serving adult women with Rett syndrome in residential or day programs.
✗ Skip if Clinicians who only treat verbal clients or children under ten.

01Research in Context

01

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.

02

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.

03

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.

04

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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→ Action — try this Monday

Add two caregiver mood questions to your intake form and flag any client who shows both social withdrawal and daytime lethargy.

02At a glance

Intervention
not applicable
Design
survey
Sample size
56
Population
other
Finding
not reported

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