This article has been commissioned by Ipsen. Ipsen also provided editorial content for this article.
ALLSC-UK-001476
September 2024
David Montgomery
Medical Director, Ipsen UK and Ireland
Patient empowerment, which ensures people have access to information and the ability to participate in making decisions about their care, is critical given the challenges and debilitating symptoms that can be caused by rare liver diseases.
People living with rare liver diseases share many challenges, including delayed diagnoses, misdiagnoses, limited treatment options and a lack of available clinical specialists and appropriate care plans. It’s therefore critical for them to be empowered with information so they can be involved in decisions about their care.1
How to empower rare liver disease patients
The question of patient empowerment for those living with rare liver diseases is particularly relevant in September when we recognise Primary Biliary Cholangitis (PBC) Awareness Month. This milestone brings to life the experiences of those living with PBC, a rare and progressive autoimmune liver disease that is on the rise worldwide.2 This condition, which primarily affects women, can lead to chronic inflammation and scarring of the liver and even liver failure if left untreated.
How empowerment could unlock better outcomes for those living with PBC
- Diagnostic delays: Due to low awareness and the non-specific nature of the most common symptoms including fatigue and chronic itch, people often live with the condition, and worsening symptoms, for prolonged periods before finally receiving a diagnosis – often which they may be forced to advocate for.
- Misdiagnosis: There is a misconception that most liver diseases are caused by alcohol consumption or other lifestyle factors. This is not the case with PBC, but the fear of stigma can often haunt patients. It can even lead to misdiagnosis and mean people living with PBC can feel ashamed to speak about their condition.
- Psychosocial impact: The chronic nature of PBC, coupled with its often debilitating symptoms, can impact mental wellbeing.3 People living with PBC can also feel unheard due to suggestions that symptoms may be self-inflicted, meaning they need to engage with psychological services or community support, which can be all too often difficult to access in the current UK healthcare system.
Everyone is different and may have very individual
questions, but you are your best advocate.
How to find information and support
Everyone is different and may have very individual questions, but you are your best advocate. Look to reliable sources, such as patient organisations and healthcare professionals — it can be useful to prepare for any appointments by keeping a list of questions and knowing what you would like to get out of the appointment. It’s also important to keep track of any changes in your condition or symptoms including how you may feel mentally. However, the biggest factors you can directly control are lifestyle choices like your diet and exercise – maintaining a healthy lifestyle plays a large role in managing PBC.
Mo Christie, Head of Patient Services at the PBC Foundation, recently commented: “Living with PBC myself, I understand how debilitating the symptoms can be and the full breadth of unmet needs and challenges. It can be confusing and worrying to receive a diagnosis of PBC, but there is such a strong community of support out there. At the PBC Foundation, we provide information, tools and resources to give people a voice and ensure they are listened to and understood.”
Community role in patient empowerment
At Ipsen, we understand that receiving a diagnosis of a rare liver disease can be one of the most emotionally turbulent moments in a person’s life. That’s why we closely listen to and work with those living with rare liver conditions through advisory boards, focus groups and individual conversations to understand how we can help address their needs, and how we can partner with the community to do so.
Our ambition is to help people living with these rare conditions to live life to the full every day — by doing everything in our power to deliver advances in treatments for rare liver diseases that both manage progression of disease and address the effects of symptoms.
Empowered patients achieve better health
Patient empowerment has a host of benefits, including more effective self-management, greater participation in research and clinical trials and improvements in the care patients receive. Ultimately, empowered patients can achieve better health outcomes and mental wellbeing.4 Working together, we can ensure that people living with rare liver diseases are increasingly able to access the treatments and innovation they urgently need.
For more information and support, visit:
[1] Hirschfield GM, et al. Expert Rev Gastroenterol Hepatol 2021;15(8):929–939.
[2] Younossi ZM, et al. 2019. Diagnosis and Management of Primary Biliary Cholangitis. Am J Gastroenterol. 114(1):48–63.
[3] Sivakumar, T., & Kowdley, K. V. (2021). Anxiety and Depression in Patients with Primary Biliary Cholangitis: Current Insights and Impact on Quality of Life. Hepat Med, Volume 13, 83–92.
[4] The PBC Foundation. Living with PBC – self-care. Advocate for yourself. Available from: https://www.pbcfoundation.org.uk/living-with-pbc/self-care/. Last accessed: September 2024.
