Our Lead Nurse, Hayley Leonard, talks about how we’re changing our approach to patient information to move away from timelines, and focus on patient experience.
Timelines are often used in medicine as a marker for recovery. For stem cell transplant patients, we’ve seen this in the emphasis on 100 days and one year after transplant. It’s been perceived that once day 100 has been reached, symptoms will reduce and the risk of acute graft versus host disease (GvHD) has passed, and that one year after transplant, recovery will be complete.
For some patients this is entirely true, but for others this can seem unrealistic, and ultimately unhelpful. The reason these timeframes have been used is partly due to the medical and financial models used for organising a stem cell transplant. For example, a bone marrow aspirate is routinely taken at day 100 and one-year post-transplant to measure response. Additionally, funding from commissioners for transplants is only given up until day 100 and, historically, GvHD grading was measured as ‘acute’ for symptoms pre-day 100 and as ‘chronic’ after day 100.
Changing our approach
Recently, our approach to recovery timelines at Anthony Nolan has begun to change. This is for several reasons. Firstly, our understanding of the post-transplant experience has grown. We now know through studies about quality of life after transplant, as well as our own research, that patient experience is very varied, as are the points in time that symptoms occur.
We know that for some patients, recovery can be quicker and smoother – while others develop acute and chronic ongoing side effects. The way that GvHD is now measured also reflects this, moving away from day 100 and defining ‘acute’ and ‘chronic’ based upon symptoms and not time after transplant.
Listening to patients
Another reason for changing our approach is that patients have told us they don’t want a timeline attached to their recovery. Anthony Nolan recently held focus groups with patients to discuss what they want a post-transplant care pathway to look like, and what came through very strongly was that they wanted to move away from timelines.
‘The first 100 days ARE crucial. But so are the first six months. And the first year. And the second year. And every year beyond.’
George Norton, who had a stem cell transplant in 2014. Read about George's story.
Patients felt that by focusing on a timeframe to have achieved a certain level of recovery, especially as early as day 100, was misleading. And, if this wasn’t achieved, patients would feel like they have failed or that something had gone wrong. This is, of course, not true – the complex factors that will influence patient recovery means that it will be different for everyone. What is important though, is that patients and families should be aware of side effects after transplant and how to manage them.
Our patient information
In Anthony Nolan’s Patient Services, we have now re-structured our webpages to no longer focus on timelines such as three months and one-year post-transplant. We now talk about recovery in relation to Mind, Body and Life and help patients to use this information at various periods in their recovery. This is in response to our ongoing communication with patients and families, as well as the Pathway for Post-Transplant Care report we’ve developed together with the Anthony Nolan Policy and Public Affairs team, which you can read more about at www.anthonynolan.org/8-ways-you-could-save-life/campaign-us/our-work-improve-post-transplant-care.
Your stories
Though we’re changing how we approach patient information, we also understand that many patients do find personal recovery milestones helpful. Many people celebrate their transplant anniversaries on social media and get a huge sense of pride, gratitude and relief about how far they have come. We certainly don’t want to take this sense of achievement away, which is why we’ll continue to share and champion these moments in patient’s lives. If you have a story you’d like to share, then we’d love to hear from you. Get in touch with our Stories Manager at stories@anthonynolan.org
Improving patient experience
At Anthony Nolan, we want to improve patient experience and quality of life, keeping patients at the heart of everything we do. Listening and sharing what we’re learning with the wider transplant community, as well as changing how we publish patient information, is one step to achieving this