Innovative diagnostics and treatment of misophonia in children and adolescents: a new psychiatric disorder

Internationally, very little research has been conducted into complaints of
misophonia. The disorder misophonia was first described worldwide by Prof.
Denys of the Amsterdam UMC. This is special, because it is very rare that a new
psychiatric disorder is discovered. Some research has already been carried out
in adults, but very little is known about misophonia in children / adolescents.
People suffering from misophonia are overcome by uncontrollable, extreme anger,
disgust or hatred at hearing normal human sounds (such as chewing, smacking,
nose sniffing, or breathing) especially in the home setting. This can also
occur when seeing movements that arouse the feelings (e.g. grinding jaw).
Epidemiological studies on misophonia in children have not yet been
performed.Two studies among young students show that the prevalence of
clinically significant misophonia symptoms varies from 6% -20%. Research at the
psychiatry outpatient clinic of the Amsterdam UMC, location AMC, in nearly 600
adult patients with misophonia, has shown that the average age of onset is
around 13 years, so the complaints develop at a young age. Children are
regularly referred to the Bascule/Levvel from the age of 8, whilst they can
have been suffering already for several years. Although many adults and
children can experience these misophonia symptoms in a mild form, for some they
mean tremendous suffering. The strong emotions and negative thoughts must
always be suppressed, which is very tiring. Misophonia can have a serious
disruptive impact on children's lives, at home, at school and within the
family. For example, children can no longer eat, sleep, drive a car (e.g. while
on vacation) or lead a normal family life with the family. There is a lot of
avoidance and anticipation of fear of situations with the sounds. Thusfar,
questionnaires for the screening and diagnostics of misophonia in children and
adolescents have not been validated yet. Furthermore, there is no
evidence-based treatment protocol.

The two objectives of this study are:
1) validation of two questionnaires, the Misophonia Screening List - Child and
Youth and the Amsterdam Misophonia Scale-Youth (AMISOS-Y) in order to screen
adequately for misophonia
2) testing the effectiveness of an innovative group treatment protocol for
misophonia in children and adolescents

(See also METC protocol)

Ad objective 1: validation of the questionnaires.
The two questionnaires will be validated using baseline (intake) data of
children referred to the Amsterdam UMC/Levvel for diagnosis and treatment of
misophonia. In addition, the scores on the questionnaires of 240 healthy
control children will be used. The healthy control group will be recruited
through collaboration of the research department of the Amsterdam UMC and
Levvel, through elementary and secondary schools in Noord- and Zuid-Holland and
Brabant. The gender ratios will be adjusted to the ratio in the research group.

Ad objective 2: effectiveness of the treatment protocol is investigated by the
means of a randomized controlled trial (RCT).
The effectiveness of the treatment protocol will be investigated by using a
single blinded randomized controlled trial (RCT) involving cognitive-behavioral
therapeutic treatment and a waitinglist control group.

The moments of assessment will be:
T1 = baseline assessment at intake
T2 = after end group treatment intervention group or after 3 months of waiting
T3 = after end group treatment waitinglist control group or 3 months after T2

(See also METC protocol)

The intervention group and the waitinglist control group will receive treatment
according to the revised protocol "Group treatment for misophonia youth (12-20
years old)". This protocol is revised, in order to be suitable for children
between the ages of 8 and 12 years old. This standardized cognitive behavioral
protocol (CBT) consists of 7 weekly group sessions and 1 follow-up session
after 1 month. After 3 months of waiting, the waitinglist control group will
receive this intervention as well.

The risks associated with participation are negligible and the burden is
minimal. The intervention that is being investigated is part of the care as
usual.

Burden: the baseline measurement (T1) and direct post measurement after
treatment (T2 for direct treatment group and T3 for waiting list contol group)
are part of care as usual. During these measurements, the children/adolescents
fill in questionnaires (total duration approx. 60 minutes). Most of the
questionnaires that are administered during these measurements are also part of
care as usual, including the diagnostic interview (duration approx. 90-120
minutes, only at T1). For this research, children will fill in extra
questionnaires, that take a maximum of 25 minutes per measurement.

For parents, the questionnaires will take approx. 110 minutes, and the
interview another 90-120 (only at T1). Again, most of these questionnaires
and the diagnostic interview are part of care as ususal. For this research, the
extra questionnaires will take a maximum of 65 minutes per measurement.
Children and their parents do not have to travel to the Amsterdam UMC/Levvel
for these measurement moments. These measurements can be completed at home
(digitally). The researcher will contact the parents for one questionnaire
through telephone on the three measurement moments.

The digital questionnaire for the teacher will take approx. 15 minutes and is
part of care as usual.