Background to the first MarrowKidz online survey

We understand that the effects of aplastic anaemia can be devastating. We know that the impact on a person's emotional well-being and mental health is significant. We also know that there isn't enough information on aplastic anaemia and we are going to change that - with your help.  

Thanks to the National Lottery Community Fund, the MarrowKidz Programme is producing an interactive resource library to support children, young people and their families. These resources are aimed at those affected by aplastic anaemia from diagnosis, through treatment and post recovery.  
 
The first resource we are focusing on is a library of factsheets. The list of topics is endless because aplastic anaemia is complicated, can span several years and affect every aspect of a person's life. We created an online survey to enable young people, their families and clinicians to help us prioritise the topics which are most needed. By completing the survey, the aplastic anaemia community are guiding us to ensure that the resources we develop are relevant, appropriate and driven by those who know and understand the impact of aplastic anaemia. Thank you for sharing your experiences with us.

Key facts about the survey

• The survey ran for two weeks from 11th to 26th January 2020.
• The survey was open to young people (0-25) and their family members, living in the UK, affected by aplastic anaemia.
• It was also open to clinicians working in the UK with paediatric patients affected by aplastic anaemia.
• The survey was shared with the Patient Family Reference Group for MarrowKidz and through the Aplastic Anaemia Trust closed Facebook group.
• A total of 40 respondents completed the survey.
• The respondents were spread across all regions in England and Scotland.

Here's what we learnt

The pie chart below shows the categories that best describe the respondents. 32% of the respondents were young people or had aplastic anaemia as a child or young person.  

The pie chart below reveals that we did not get any respondents that were at the 'at diagnosis' stage. This is understandably an anxious time for patients and their families. We hope that the feedback from clinicians reflects the most helpful topics for patients who are given a diagnosis of aplastic anaemia. Just over a third of respondents are currently receiving treatment for aplastic anaemia. We really appreciate the time taken by patients and their families to help us during this uncertain time.

We asked respondents which topics related to clinical information were the most useful to feature in a series of factsheets. The graph below shows us what they told us.  

We also asked respondents which topics associated with 'quality of life' were the most useful to feature in a series of factsheets. This is what they told us.   

We encouraged respondents to share with us any additional topics they would like to see feature in a series of factsheets, as well as share any comments with us. The feedback was incredibly illuminative and there were several themes that emerged across the feedback. Access to information on sources of support was critical. Patients and families want more information, at the very start of their journey, on who to talk to, support groups and the charities and organisations that can help them as a family.  

Who can help my family and myself?

There was a need for more information on healthy lifestyles and adapting to a new ‘normal’ after recovery. This included coping with changes such as hair loss.  Patients and families told us that they also want more information on exercise, fitness and socialising. 

Healthy lifestyles as steroids and cyclosporin make you put on weight and AA reduces your stamina.

Although managing finances did not rank as high as other topics that people would like to see covered, a number of patients and families told us that they wanted more information and help with finances and benefits.

Applying for PIP or financial support as a young adult.

Patients and families repeatedly told us that they want a greater understanding on longer term effects of treatment choices for their aplastic anaemia - both physical and psychological.

Information on late effects post recovery of treatment.

Will my aplastic anaemia come back?

We also know from your feedback that emotional and psychological support is important to you.  We plan to work with play therapists, psychologists and counsellors to support all aspects of a person's life affected by aplastic anaemia, including mental health and well-being.  

Fear of not recovering and leaving my family behind.

Thank you to the young people and their families for their brave and honest responses.  Thank you also to the clinicians that took time out of their incredibly busy schedules to share their views with us.  Together we are working to address the needs identified, so we can help children, young people and their families affected by aplastic anaemia, now and in the future. 

How brilliantly helpful you all are!

Nearly two thirds of respondents have volunteered to help create content for the factsheets.  It is incredibly valuable to produce resources by those who have lived through aplastic anaemia to support and benefit the future aplastic anaemia community.

Thank you for your overwhelming support! 

For further information on this online survey, or on the MarrowKidz Programme, please email Leena O'Hara, MarrowKidz Programme Manager, at [email protected].uk 

The biggest issue we had at time of diagnosis was the lack of information.  Also as AA is a very rare disease, 2 years after diagnosis my daughter still hasn’t met anyone with AA!  Hopefully this programme can change that.