Incontinence and psychological symptoms in individuals with Mowat-Wilson Syndrome.
Nearly every person with Mowat-Wilson Syndrome remains incontinent into adulthood and half show clinical-level mood or anxiety signs—so always screen toileting and mental health.
01Research in Context
What this study did
Justine et al. (2017) sent a survey to families of people with Mowat-Wilson Syndrome. They asked about toileting and mood, behavior, and anxiety problems. Forty-seven surveys came back, covering both kids and adults.
What they found
Almost every person—97.7%—still had incontinence past childhood. One quarter to nearly half scored above the worry line for psychological problems, no matter the age group. In short, toileting needs and mental-health risks stay high for life.
How this fits with other research
Doughty et al. (2002) looked at adult women with Rett syndrome and found fewer behavior problems than other adults with ID. Justine’s group saw more mood and anxiety flags in Mowat-Wilson adults. The picture flips: one syndrome shows lower irritability, the other shows higher psychological risk.
Emerson (2011) warned that adults with mild ID who skip specialist care carry hidden health risks. Justine’s data add a new hidden risk—lifelong incontinence—in a different genetic group. Together the papers say, "Screen everyone; problems you don’t see still hurt."
Johansson et al. (2010) showed autism tools miss kids with sensory and motor issues. People with Mowat-Wilson also have multiple needs at once. Both studies push clinicians to look past single labels and check toileting, mood, and development together.
Why it matters
If you serve adults with rare genetic diagnoses, add two quick boxes to your intake: "Still incontinent?" and "Mood/anxiety check done?" Catching these lifelong needs early saves dignity, hours of problem behavior, and caregiver stress.
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02At a glance
03Original abstract
BACKGROUND: Mowat-Wilson Syndrome (MWS) is caused by deletion/mutation of the ZEB2 gene on chromosome 2q22. MWS is characterized by a distinctive facial appearance, severe intellectual disability and other anomalies, e.g. seizures and/or Hirschsprung disease (HSCR). Most individuals have a sociable demeanor, but one third show psychological problems. AIMS: The aim was to investigate incontinence and psychological problems in MWS. METHODS AND PROCEDURES: 26 children (4-12 years), 13 teens (13-17 years) and 8 adults (>18years) were recruited through a MWS support group. The Parental Questionnaire: Enuresis/Urinary Incontinence, as well as the Developmental Behaviour Checklist (DBC) were completed by parents or care-givers. OUTCOMES AND RESULTS: 97.7% of persons with MWS had incontinence (nocturnal enuresis 74.4%; daytime urinary incontinence 76.2%; fecal incontinence 81.4%). Incontinence remained high over age groups (children 95.8%, teens 100%, adults 100%). 46.2% of children, 25% of teens and 37.5% of adults exceeded the clinical cut-off on the DBC. The ability to use the toilet for micturition improved with age. CONCLUSIONS AND IMPLICATIONS: MWS incontinence rates are very high. All had physical disabilities including anomalies of the genitourinary and gastrointestinal tract. Due to the high prevalence rates, a screening for incontinence and psychological problems in MWS is recommended.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.01.006