Living with Aquagenic Pruritus
HSS Research Conference 2008
13th June
Roberta Babb - 3rd Year Trainee Clinical Psychologist
Supervised by: Professor Gill Green
Dr Clive Grattan
Presentation Aims
• Introduction to research
• Present research
▫ Rationale
▫ Methodology
▫ Findings
Introduction
• Little known about experience of living with rare
conditions.
• Ten disease groups account for approximately
70% of dermatological consultations (Williams,
1997).
• At least 1000 skin disorders have been
identified.
• 1 in 4 people suffer from a skin condition.
• Estimated UK costs = £721 billion - 2000-2001
(Hall, 2003
Aquagenic Pruritus - AP
• AP is the study’s focus.
• Rare, persistent, and potentially disabling skin
condition.
• Name derived from Latin
– Aquagenic – Water Induced
– Pruritus –Itch
• First recognised in 1970 by Greaves et al, and
formally described in 1981 by same professionals.
• Prevalence estimates are not available for AP
– However, it is generally thought that more people
suffer from it than those who present to healthcare
services.
AP Characteristics
• AP is characterised by an intense burning and prickly itch at skin
sites which have direct and non direct contact with water.
• No visible manifestations.
• Itch can be triggered during, immediately after water contact, or
even after a delay.
• Typically lasts between ten minutes to 3 hours.
• Males and Females equally effected.
• AP symptoms can also be triggered by various agitators which do
not involve water.
• AP Aetiology is unknown.
• Currently no cure and treatment options are medically and
notoriously unsatisfactory.
• The complexity and uncertainty is likely to impacts upon the
diagnostic process, treatments offered, accepted, and adhered to
and the associated (negative and positive) psychological and social
issues.
Diagnosis
• AP is difficult to diagnose for a number of
reasons.
• These include:
– The ability of the individual to present to
healthcare services in the first place.
– The ability of the individual to adjust and cope
with the disorder.
– The knowledge of the healthcare professional and
their willingness to refer the individual to
specialist services.
Research Overview
• Qualitative study
▫ Explored experiences of, and sense people who
had been diagnosed with AP made of their
experiences.
• Little research available on AP.
▫ Current research medically focused
▫ No research concerning personal experience or
psychosocial impact of the condition.
Skin Conditions
• Skin conditions can effect an individual in a number
of domains.
• Tendency to categorise skin complaints as ‘minor
problems’.
• Psychosocial effects of skin disorders neglected.
• Human experience is complex and subjective.
• An appreciation of this has encouraged a shift from
traditional medical quantitative research to
qualitative research which explores the
phenomological experience of the skin disorder in
question.
Psychiatric Morbidity in Dermatology
Clients
• Professionals believe that psychiatric morbidity in
dermatology clients is high.
• Estimate 21-43% of dermatology patients have
emotional issues
• Dermatologists ability to detect psychological or
psychosocial difficulties is not completely
satisfactory.
• Psychosocial well-being of dermatology clients
recognised but is underestimated.
• The meaning an individual makes of their skin
disorder experience can influence an individuals
ability to manage or adapt or cope.
Psychodermatolgy
• Consideration of psychosocial factors associated
with skin disease is an essential management
component.
– Especially the individuals perspective on living with
the skin disorder.
• Clinical Health Psychology recognises that the skin
is a door to physical and psychological problems and
processes.
• AP is a psychophysiologic condition in that it reacts
to emotional states.
• The interface between psychology and dermatology
is called psychodermatolgy.
Rationale
• Exploring the personal experiences and the
sense people diagnosed with AP gave to their
experiences would:
▫ Raise awareness and the profile of AP.
▫ Help improve dermatology clients diagnostic and
treatment experiences by formally describing
some of the psychological and social effects of AP
Research Questions
1. How does being diagnosed with AP impact upon
individual’s explanations and views of themselves?
2. How do people who have been diagnosed with AP
experience and view the dermatological diagnostic
process?
3. How does the experiences and related views impact
upon the treatment processes for people who have
been diagnosed with AP?
4. How do people who have been diagnosed with AP
manage, cope, and live with AP?
Methodology
• Interpretive Phenomenological Analysis is the
chosen method for data analysis.
– Grounded within the framework of personal
knowledge and subjectivity.
– Emphasise the importance of the individuals
experiences.
• Ethical approval and R&D approval gained
• Ethical issues and quality assurance measures
addressed
• Data gathered through semi-structured interview
• My role as a researcher
Participants and Recruitment
• 6 participants
• All Caucasian
• 3 female 3 males
• Age 32-76
• Symptom duration 7-23 years (adult onset)
• Long term relationship (5 married 1 long term partner)
• Recruited via dermatology service
• 5 face to face interviews
• 1 telephone interview
Findings
• Personal Experience of Aquagenic Pruritus
▫ Physical Experience of Aquagenic Pruritus
▫ Difficulty Articulating the Personal Experience
▫ Crisis Point
▫ Perception of Healthcare
• Impact of the Personal Experience of Aquagenic Pruritus
▫ Fear
▫ Organisational Grasp on Life
▫ Loss
▫ Identity Changes
▫ Emotional
• Coping with, and the Management of Aquagenic Pruritus
▫ Private Nature of Aquagenic Pruritus
▫ Self-Developed Practical Coping Strategies
▫ Psychological Coping Strategies
Personal Experience of AP
• Most prominent theme
• Encapsulated participant’s
▫ Thoughts and feelings about AP
▫ Symptoms
▫ Difficulty in describing the itch experience
▫ Experiences of diagnosis and treatment
• Participant’s saw themselves as:
▫ Victims of an unwanted and ill understood
condition
▫ Having a condition rather than being ill
Physical Experience of AP
• It’s like burning... itching... red hot needles.
Like lots of little red hot needles. You are totally
aware of this burning sensation. It feels like
pins and needles, like somebody digging pins...
hot pins and needles into you” Participant E
Physical Experience of AP
• “I used to... for say three quarters of an hour, I
was really sort of scratching, and I didn’t know
what to do... “Back, chest, legs... you know
everywhere. And you sometimes I just didn’t
know... as you went from one place to another...
you were like that... you know... both hands
fully occupied.” Participant D
Physical Experience of AP
• Sometimes I will have to stop what I am doing
because I have to itch, you know. Basically, it
can impact to the state where I just can’t do
things.” Participant C
Difficulty Articulating Experience
• “Really it is only when it actually effects me, like
having a bath or being in water, something like
that, the intensity of it comes back to me. Um...
so when I haven’t got it or when it is not
effecting me like now, it is very difficult to
remember exactly how bad it is... “ Participant A
Crisis Point
• “R: I started... erm... noticing that every time I had a bath, a
shower or a swim... I’d get out and dry myself... and then I’d get
this chronic itching all over me. And you know... I can’t
remember... I can’t remember if it came on suddenly, or whether it
gradually came on... I just can’t remember. But you know, the first
few times it happens you think... “Oh erm... I’m a bit itchy, and
that’s a bit silly”, but that’s it so you leave it. But then it happened
consistently and I just thought that this is getting ridiculous, as it
was really unpleasant. Erm... the first time I mentioned it to my
doctor, I.... I... I think he was as a... as I had been to see him about
something else you know, and I said by the way, every time I have
a bath or shower or anything. And the first time he said to me was
there’s nothing we can do about that, you know... we can’t... I don’t
know anything about that sort of thing [laughs]
• I: Did you feel that he believed you?
• R: He believed me yeah.... but just said there’s nothing you can do
about it so... six months, another six months after that went by... F
Perception of Healthcare
• Complex diagnostic process
• Experience was divided into two parts
▫ Pre specialist service (Primary Care)
▫ Post-specialist service
• Participants normalised water itch experience
for as long as they could tolerate it
• Decision to seek help prompted by reaching a
crisis point.
• Concerns about how they would be perceived
Diagnosis
• “I felt as if I wasn’t a fraud anymore [nervous chuckle]. Yes, and it
wasn’t.... ‘Cause I suppose a typical thing.... is that if you can see
an injury, people will believe you. ...If it is something like this
which shows no physical signs, erm, you almost feel like you are
a... malingering... git... who doesn’t really suffer from anything,
erm, and you are a bit of a fraud you know, you are making it...
They make you feel as if you are making it up, because no-one can
physically see or understand the symptoms... so... it was nice to
come here and put a name to it. It made it felt.... made it feel a
little bit more real. Erm, and perhaps there was some way of
treating it, and giving me a bit of... There was a bit of light at the
end of the tunnel as it where. And that is basically really it. There
is nothing more to it other than I felt good and thought that
perhaps we can move on now, after all these years I have been
suffering from it, and not really getting anywhere with any sort of
diagnosis and sort of just putting up with it, and it was great to
think right.”
• “R: Although I did find it quite funny that they had
a Latin name for something. If you used it in
English it would sound quite silly [laughs]...yes.
But then I thought we use Latin for lots of stuff
‘cause in English it would sound stupid, so, so you
give it a Latin name and it sounds “Oh right [in a
higher pitched voice], it sounds like a proper
illness”. You know water itch, or water itching...
• I: Water induced itching?
• R: Yes, water induced itching or whatever you
want to call it doesn’t sounds as good. Whereas
Aquagenic Pruritus... “Oh a nice Latin name” it’s
real [laughs]”.
Treatment
• Few interventions available – fewer that work
• Long process – trial and error
• Participants felt believed which was positive, but
let down by the medical profession because of its
inability to cure or effectively treat the condition.
• Felt in the absence of medical treatment they
were left to their own devices and just expected
to get on and live with the condition.
▫ Development of coping strategies
Practical and psychological
Current Position
• Using the data to answer the research
questions
• Considering clinical implications of research
findings and linking them to psychological
theory
▫ Considering ways to incorporate psychological
input into dermatology services
• Thinking about areas for further research
• Critically appraising the study
Thank you
Thank you for listening.
Does anyone have any questions?