Forum, Fall 2013
• Observations seen with increased itch burden include
missed work, distraction from relationships, decreased
attention span and divorce.
• Dr. Marilyn Mayo, a Hepatologist from Dallas, TX,
with her colleagues created the 5-D Itch Questionnaire.
The nature of itch is subjective and multidimensional
and the sensation leads to an emotional response
which leads to a behavioral response. Dr. Mayo was
motivated to develop the questionnaire as a tool to
study the underlying mechanisms of itch, improve
therapies and to guide clinical care. The questionnaire
is based upon a 1-5 scale which measures: Duration,
Degree, Direction, Disability and Distribution. The tool
is capable of detecting change over time, has proven to
have a good response rate from patients and is available
• The pitfalls of using questionnaires for research are:
Itch intensity has a wide range – it can be 0-100
or 0-4; No itch to very severe itch to worst
Questionaires are not specific in most studies
Lack of reliability for values describing sensory
qualities. For example there are problems with
parameters like localization.
They don’t necessarily capture the circadian
rhythm with itch. Need to address how itch changes
How the data is captured may make a difference;
electronic diaries are best as they have a “time
stamp” on them.
How itch and pain interface needs to be addressed.
also needs to be
Quality of Life
• Dr. Suephy Chen and her
colleagues from Emory
University in Atlanta are studying quality of life and
itch. Some of the challenges presented by this topic of
study are: quality of life isn’t immediately “visible”
and is hard to measure; a low number of outpatient
visits were related to itch which can make it difficult to
validate the importance of studying quality of life; and
it relies on patient participation. Also being looked at in
Dr. Chen’s study is the economic impact of itch and the
costs associated with over-the-counter, prescribed and
• Other interesting findings from Dr. Chen’s study were
looking at the U.S. Veteran population, it was found
that among 1,000 U.S. veterans, 30% suffered from
chronic itch lasting at least 6 weeks. This raised the
question of post-traumatic stress disorder.
• Additionally, Dr. Chen’s survey of 73 patients suffering
from chronic itching revealed they would give up 13%
of their lives to have the rest of their lives without itch.
LyP. Due to this risk, patients need to be regularly seen by
their doctor to pick up any changes that may signal early
The cause of CTCL is not known. No lifestyle factors have
been definitely linked to childhood CTCL. Neither parents
nor children have control over factors that may cause
CTCL. Children, who have had Hodgkin lymphoma, may
carry a slightly higher risk of developing CTCL, but this is
Unfortunately, there are no specific guidelines for treatment
of CTCL in children. The treatment choices should be
influenced by their long-term risks and side-effects. In
general, skin-directed therapies such as phototherapy
with narrowband-UVB light, intermittent use of topical
steroids, topical retinoids, topical nitrogen mustard and/
or tacrolimus (calcineurin inhibitors as used in atopic
dermatitis/eczema) may be indicated. These therapies are
the cornerstones to control recurrent rashes and relief of
itch in mycosis fungoides. Rarely, in severe cases systemic
therapies are needed. Quick showers/bathing with mild
unscented soaps and emollients are important to control
skin dryness, minimize infections and also important to
restore the skin barrier. Bubble baths are not recommended
as they can increase itching. Similar to atopic dermatitis/
eczema there is little dispute that the presence of bacteria
on the skin such as Staphylococcus aureus is common in
mycosis fungoides and can worsen skin disease. Diluted
bleach baths as directed by your doctor help to minimize
the risk for germ spreading and infection.
Every young patient should be evaluated by a team or team
member specializing in CTCL with the expectation that
he or she will return to a normal life focused on family,
friends, and the future.
Diagnosing and Treating Young CTCL Patients...
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