Improving medicines for children (part 2) – What is important to children and young people?

This is the second post in a series on ‘improving medicines for children‘.  Part 1 highlighted the importance of asking children and young people’s opinions about the medicines they take, and what medicines they would like researchers to develop in the future.  By asking their opinion and ‘listening’ to what young people have to say will ultimately lead to the development of medicines that are acceptable to them.

YOUNG PEOPLE’S OPINIONS ON MEDICINES

I truly believe that everyone has the right to have a say and express their opinions in all matters that impact their lives, whether that be in education, healthcare, politics etc etc.  For children and young people this ‘right’ is made explicit in Article 12 of the UN Convention on the Rights of the Child and is embedded in our model of working alongside children and young people in health research.

Here is what some children and young people have told us previously about the medicines they take and what they would like to see in the future.

Not sure if researchers can produce a ‘super hot dog‘ medication, but your never know?

Building on young people’s opinions expressed in the video we held a workshop with young people entitled ‘acceptable methods for administering medicines for children and young people’ which I co-faciliated in partnership with my colleagues from the Paediatric Medicines Research Unit (PMRU).   The workshop took place at the Institute in the Park at Alder Hey Children’s Hospital on the 10th August 2017.  The aims of the workshop was to:

• Listen to what was important to young people about medicines they currently take and what type of formulations would they like researchers to develop in the future
• Explore potential new devices to administer medicines to children
• Explore children and young person age-appropriate tools to measure the acceptability of paediatric medicines

The workshop was funded by a small grant obtained by the Medical Research Council (MRC) Proximity to Discovery Industry Engagement Fund at University of Liverpool. The focus of this post is to highlight what young people thought about the medicines they currently take and their ‘wish list’ for future formulations.

LISTENING TO YOUNG PEOPLE

The workshop was attended by ten young people aged between 13-20 years old.  Eight of the young people where from GenerationR Liverpool Young Person’s Advisory Group and two where from Alder Hey Children’s Hospital Youth Forum.

Following a quick fun icebreaker a brief presentation was given by the PMRU team to explain the purpose of the workshop and highlight some of their completed projects that have contributed to developing better and safer medicines for children , which include:

• Adverse Drug Reactions In Children (ADRIC)
• Manipulation Of Drugs In Children (MODRIC)
• Medicines in Schools
• Age appropriate formulations for children

The team also discussed some new studies they are working on, such as:

• Creating Acceptable Tablets (CAT)
• Creating Acceptable Tablets 3D (CAT 3D)
• Palatability of Prednisolene (POP)

And many more…..

We then asked the group a series of questions using ‘turning point’software.

1. How often do you take medicines?
2. How was the medicine given to you?
3. Have you ever thought about how medicines are made?
4. How much do you think it costs to make a medicine?
5. Who is the most important person when developing a medicine for children?
6. Which group do you think is best to test medicines on, after they are finally made?
7. As a young person, would you consider being involved in a clinical trial for the development of a new medicine?
8. If you had to take a medicine every day which type of formulation would you choose?
9. If you had to take a medicine every day what would be the most important factor to you?

HERE IS WHAT YOUNG PEOPLE SAID

Headlines include:

• 30% of the group took medicines everyday, 40% sometimes and 30% only when ill
• 80% of this medication was given in the form of a tablet, 10% capsules, and 10% inhaler
• 70% of the group said they would consider being involved in a clinical trial for the development of a new medicine
• 70% of the group said their chosen formulation would be in a tablet format
• 40% of the group said that aftertaste is the most important factor if they had to take medicine every day, 20% said frequency, dose volume, taste, tablet size and pain all received 10%.

None of these findings came as a major surprise to the team and the groups opinions about their dislike for liquid formulations and preference for tablets as their ideal formulation complimented the current research being undertaken.   But what about the burning question “At what age should children be allowed to take tablets?” interestingly one young person replied its like asking “at what age should children be allowed to play with lego?” all children are different. Hopefully the CAT and CAT3D studies will shed some further light on this topic?

DESIGNING NEW MEDICINES

We finished the workshop by asking the group if they where to design a new medicine what would be the most important three factors to them? No surprises the top three factors include:

• Frequency,
• Size,
• Taste/aftertaste

SO WHAT NEXT?

We know this is the opinion of a small group of young people but building on our previous other consultations with young people we are generating a better understanding of the type of medicines young people like and what the focus of research should be now and in the future.  In part 3 of this series I will highlight how the team are trying to produce reliable age-appropriate tools to measure the acceptability of medicines in partnership with young people.

For further information about this project please contact me. For further information about our recent activities with children and young people, read the GenerationR Liverpool YPAG Annual Report 2016-17.

Thank you for reading.