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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.
  • 2016Researchers 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:

  1. Get people to tell stories. Listen to how things connect in their mind; ideas, themes, and influences.
  2. 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 our models, 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 or visit the Hamell website.    

9th August 2017