Improving patient transitions for people living with rare - key learnings

Written by Gavin Jones, Global Advisor, Rare Diseases on Tuesday 23rd March 2021

As we move on from our first theme of 2021, I am keen to provide an overview of what we covered and, more importantly, what we learned through different discussions and articles on the topic of patient transitions.

The first point that I want to recognise is that every conversation I have with the rare disease community takes my understanding that little bit further. I can’t tell you how much I value these interactions as they help me so much to shape our approach and solutions to rare. I want to thank all of our contributors for sharing their stories so openly with us throughout this period, and the colleagues and clients who helped along this journey.

Key take-home messages:

  • There are numerous life transitions that we need to consider and be mindful of as patients and their families are supported to manage a rare condition
  • Recognising the psychological, as well as the physical, impact of life transitions is critical to ensuring better patient experiences and outcomes
  • Recognising that the importance of communication and connectivity across a transition pathway is a fundamental requirement
  • Healthcare professional education must go beyond the traditional scientific exchange and be tailored towards the approach that they take in their consultations (they don’t always need to be the disease expert!)
  • Recognising that both quantitative and qualitative research is needed

It was a fascinating and inspiring few months working on this theme and I learned a lot. One particular highlight of mine was connecting with so many fantastic young people of the rare community which left me feeling confident about the future of advocacy in this space. If you would like to revisit any of our sessions or articles, please find links to the content below. Our focus now moves to our next theme of 2021 – pathway improvement – so stay tuned!

1) Webinar: Losing control of life transitions and how to measure its impact to drive the value of positive change

A fascinating discussion on the challenges of transitioning through life for people and families living with rare diseases and how we can measure this impact to help drive positive change.

2) Educational audio session: Better supporting adolescents living with rare

Hear from a number of patients and care-givers on their personal experiences plus thoughts from our Head of Health Psychology & Research, Dr Sumira Riaz, and Head of Patient Engagement, Richard Jones.

3) Rare Revolution supplement

Given the improvements in disease management, children and adolescents with rare diseases are living longer. In addition to this positivity is the challenge of effectively supporting these patients into adulthood. In this Rare Revolution supplement, we consider the challenges in life transitions and how the pharmaceutical industry can support in helping to ensure a positive experience for patients as they transition from paediatric to adult services.

If you have any questions about the content covered in this theme or you would like to learn more about our commitment to rare, please do not hesitate to get in touch.


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