Online survey shows prevalence of anxiety higher amongst Adult TOFs than the general population

Published: Thu, 27th February 2020, 10:10:00 AM

Last year, two MSc students in the Department of Psychology at the University of Bath, Lia Clarke and Caitlin Rabone, conducted research into the psychological wellbeing of adults born with OA/TOF.  They were supervised by Dr Vuokko Wallace (an Adult TOF), who is herself studying towards a PhD on this topic.  The students presented their findings at the 2019 TOFS Conference in October.  To review the posters in more detail, please click the links: 'Exploring the mental health of Adults with OA and TOF', and 'Thematic analysis exploring the wellbeing of Adults born with OA'.

The survey was completed by 106 adults, from 11 countries and 6 ethnicities.

A commonly used, validated questionnaire called the Hospital Anxiety and Depression Scale (HADS) was used to evaluate depression and anxiety.  The frequencies of depression (22% in the surveyed adults with TOF/OA, compared with a global prevalence of 3.4%) and anxiety (65% in the surveyed adults with TOF/OA, compared with 3.8% global prevalence) were increased – anxiety rather more so than depression.

PTSD resulting from medical events was evaluated using another validated questionnaire, the revised Impact of Events Scale (IES-R).  The Adult TOFs in the survey were found to have a 13% incidence of PTSD compared with a global prevalence of 3.9% in those not previously exposed to traumatic events, and 5.6% in those who had been exposed to one or more traumatic event.

The survey asked participants to record their ongoing health problems.  Not surprisingly, the number of health issues had an effect on the likelihood of anxiety or depression, although this effect was stronger for depression than for anxiety.

As well as standardised questionnaires (HADS and IES-R) the survey included some free text sections, where participants could describe their experiences in their own words.  The main effects on PWB in adulthood from these responses were summarised as follows:

  • Healthcare professionals can show a lack of understanding or support.
  • Surgical scars may be perceived to be unsatisfactory and difficult to accept.
  • Difficulties eating (dysphagia) can be associated with anxiety with every meal, perhaps leading to social withdrawal.
  • Medical trauma leaves a legacy of psychological distress and parental anxiety.
  • The personal journey associated with TOF/OA, however, can teach individuals strategies for resilience in the face of adversity, eg ‘finding the silver lining’ or keeping perspective.

This research – the first of its kind for TOF/OA – will hopefully be published in a psychological journal in order that it will be accessible to medical professionals.

Its recommendations include psychological interventions to:

  • Manage and reduce symptoms of low mood and anxiety;
  • Promote positive body image and acceptance of scars;
  • Teach adaptive coping strategies following stressful or traumatic experiences;
  • Increase awareness and knowledge about TOF/OA amongst GPs.


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