Issue 34

14 Professional articles
Best source of information
NHS booklet
Figure 4: Sources of information on adrenal crisis
Internet
ADSHG and a health care..
ADSHG/Pituitary foundation
Health care professional
0 2 4 6 8 10 12 14
Number of participants that gave this response
Doctor Consultant endocrinologist GP Hospital staff
7. MedicAlert bracelets
Seventeen people (71%) owned a
MedicAlert bracelet, but six did not
like wearing one or did not want one.
Four people said that this was because
the bracelet did not look nice, and eight
people felt that they were impractical to
wear.
The thoughts and feelings that people
have about MedicAlert bracelets are
useful for us to know, because they are
less helpful if they are disliked by patients
and worn inappropriately.
Our study suggests that most of
our participants wear and like to wear
a MedicAlert bracelet.
6. Attitudes towards adrenal crisis
A. Negative feelings
58% of the patients we interviewed
described negative feelings towards their
risk of adrenal crisis. This included feeling
scared, vulnerable, insecure, resentful,
annoyed, superstitious, depressed or
anxious. We have included a quote taken
from one of the participant’s interview
script in the image below.
risk. We have included two quotes from
the interviews below to demonstrate
examples of these coping strategies.
“I don’t feel anything. I
don’t think about the illness
at all. I just get on with it.
Take pills and get on with life.
Is something that just is.”
8. Patient support groups
54% of our participants were members
of a patient support group, but 42%
felt that experiences shared in support
groups could be unhelpful if negative, or
frightening. This could be a problem with
support groups that needs addressing.
We have included a quote from one
of our participants about the negative
experiences shared on support group
websites below.
“Frightened. I can’t
describe how helpless you
are. You actually get that
close to wanting to go to
a place - that’s death.
Vulnerable.”
B. Concerns
About a third of our
patients described a lack
of trust in others to act
appropriately, including
health care professionals, and were fearful
that an adrenal crisis could be fatal. More
than half had had a negative experience
involving health care professionals in the
context of an adrenal crisis, and almost a
third recalled experiences where they felt
ignored or not listened to.
C. Coping mechanisms
29% of the people in our study tried to
ignore the risk of adrenal crisis, and half
focused on negative aspects of their
“It is depressing that your
body could let you down. It
limits options - I want to go to
India or go Skiing. It is always
in the back of my mind”
We believe that negative emotions,
experiences, concerns and ineffective
coping mechanisms could impair
someone’s quality of life and ability to
prevent and manage an adrenal crisis.
We need to explore these negative
attitudes further to establish whether
we need to support people with adrenal
insufficiency better.
“Forums are full of
negativity. People who can’t
get out of the bed in the
morning. If newly diagnosed
this might be scary”
Despite this, it is encouraging
that most people felt that
support groups were useful
in terms of providing
information support and advice.
What does this all mean?
Our study suggests that involving
the patient’s support network in the
management of adrenal crisis could
help people to cope with it better. It also
suggests that more information from
healthcare professionals is wanted and
may be required.
Furthermore, we found that some of
the patients in our study have negative
Pituitary Life | autumn 2016