Making good practice common practice in rare disease
Hearing is easy – Listening is hard
When people become ill, they develop a set of beliefs about their
condition: what caused it, how it works, what will happen next, etc. These are
formed from their own knowledge and experiences and that of their friends and
family.
These perceptions are important determinants of behaviours for managing
disease’ such as adherence and coping strategies, and as a result significantly
affect treatment outcomes. For example, people may misattribute symptoms of
their illness to treatment side effects and as a result become non-adherent. Despite
this, people are rarely asked about their illness beliefs either in the
clinical setting or during the development of communication materials. This is particularly pertinent to rare diseases. With so few voices to be
heard, it is vital we listen carefully. We cannot afford to make assumptions
about patient experience and symptomatology based on our medical models; we
must listen to patients themselves.
We are starting to listen but there is still a long way to go:
1999
- People with Addison’s disease who viewed their illness as serious and
uncontrollable were found to use less active coping strategies than those who
didn’t. They felt helpless and relied on others for support. They also reported more
difficulties in physical and social functioning and mental health. Researchers
concluded that how they thought about their illness seemed to be affecting
their daily functioning.
2012 - People with
vasculitis consider fatigue one of the most important symptoms, often placing
it above problems associated with organ damage. However, fatigue
scores can’t be explained purely by disease activity and depression. Personal beliefs
about vasculitis have also been found to contribute to the level of
fatigue different people perceive.
2015
- 88% of people with early-stage autosomal dominant polycystic kidney disease
(ADPKD), reported
physical symptoms including pain and general malaise. However, 24% of
nephrologists believe early-stage patients don’t experience any symptoms. As a
result, nephrologists may underestimate the emotional impact of this stage on
their patients.
2016
– Researchers
found that people with Gaucher disease ascribed more importance to fatigue
than to other disease parameters, while their doctors put greater weight on
objective measures of visceral and hematologic symptoms. Literature suggests
fatigue may be the first symptom to significantly improve with enzyme
replacement therapy (ERT), a key treatment for Gaucher Disease, but this critical
factor may be overlooked when physicians are communicating treatment goals to
their patients. This could impact adherence.
How
can I listen?
Listening is an effortful process
and a learnt skill. Good listeners use a number of techniques - here are two
simple examples you can try yourself:
Get people to tell stories. Listen to how things connect in their
mind; ideas, themes, and influences.
Avoid your own internal dialogue. Instead of listening to others,
we tend to focus on our own interpretation of their answers. For example, if
your colleague says to you ‘Let’s talk about it another time?’ you may interpret it incorrectly as ‘I have better things to do than
listen to you’.
As we further our understanding of rare disease, we must go beyond typical
self-report measures to help patients verbalise what they may have trouble
saying.
Patients drew a picture of their heart during a
3-month follow-up for myocardial infarction. Researchers
found that the size of the drawing predicted speed of return to work,
cardiac anxiety, use of alternative medicines and number of phone calls to
health services. The drawings elicited illness perceptions and predicted
treatment outcomes.
We must also show an awareness of who we are listening to and the
relevant influencers. In the balancing act of necessity for treatment vs.
concern’ for example, patients may have very different opinions than their physicians
or caregivers and little opportunity to discuss with others ‘in their shoes’.
In mucopolysaccharidosis caregivers were found to
consistently accept more harm for greater treatment benefits than patients.
We
want to make good practice common practice in rare disease
Hamell firmly believe that you can only improve patient outcomes if you
base your decisions on a deep and robust understanding of evidence. Evidence
that comes from listening to your patients and truly understanding their
behaviour.
At Hamell, we construct models that explain how people make sense of
their illness and treatments. We also recognise that patients and health care professionals
have different understandings of an illness. Using ourmodels, we map the disconnect between patient and HCP cognitions,
to identify conflicting beliefs, misunderstanding and where information is
overlooked.
For more information about our approach and to see what we could do for
you, contact fiona@hamell.co.uk or
visit the Hamell website.
Hamell have been selected by the PM Society’s charity partner PAPYRUS Prevention of Young Suicide, to develop a fundraising campaign as part of their 'Creativity for Good' initiative Hamell
Three booklets from Boehringer Ingelheim’s More than Scleroderma campaign have been commended by the world-renowned BMA for excellence in patient information. Hamell