Patient engagement

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EPTRI is taken initiatives to achieve interaction and to guarantee engagement of the scientific communities, patients’ associations and Young Persons Advisory Groups (YPAGs) through the organisation of workshops/scientific activities (i.e. roundtables, publications, surveys, etc.) and will set up a stakeholder forum group/s with focus on different disease areas.

Additionally, the EPTRI ELSI service includes specific strategies on children and patients to guarantee that the ethical and regulatory requirements are fulfilled as well as promptly adopted to promote research according to the children’ needs and expectations.

Survey on Oral Formulations

Evidence based data on preference of dosage forms are crucial for guiding the development of age-appropriate medicines. Often, preferences across different age groups are considered, but studies on variations in preferences across populations, which may be crucial to acceptability, are lacking.

To this aim, EPTRI has developed a survey utilising country and age-adapted questions to quantify children’s experience with taking various pharmaceutical formulations.

It was reviewed and translated by the Young Persons Advisory Groups (YPAGs) of Albania, Barcelona and Bari to make the language and layout more child-friendly. So far, the survey received 506 answers from Italy, 447 from Spain, 209 from Albania, 205 from Romania, 187 from Netherlands, 131 from UK, 15 from Africa, 20 from Czech Republic and 5 from Sweden.

The survey is addressed to boys and girls up to 18 years of age and can be completed with the help of an adult. It will take approximately 5 minutes to be completed.

The survey is still open and available in 10 languages. The Hausa translation has been developed thanks to the kind contribution and support of Hafsat Rufai Ahmad, Associate Professor Paediatric Haematology/Oncology at the Ahmadu Bello University (Zaria, Nigeria) Chief Consultant at the Ahmadu Bello University Teaching Hospital and Aliyu Mande, Health Information Management officer and Community Mobilizer at the Ahmadu Bello University Teaching Hospital (Zaria, Nigeria).

If you have questions about this survey, please feel free to send us an email at [email protected].

The preliminary analysis shows important similarities and differences in preference for formulations across the different countries and shows how the health status of a child influences the preference of certain medicine types with variations across the different populations. In Spain, children preferred liquid formulations regardless of treating a chronic condition or not, while in Albania and Romania, tablets and capsules respectively were preferred among children treating chronic conditions.

The results also highlight the importance of children’s involvement as active stakeholders, as well as the importance to study preferences for kinds of oral formulations in developing tools to facilitate paediatric medicines formulation.

Administration device survey

The European Paediatric Formulation Initiative (EuPFI) works to improve the preparation of better and safe medicines for children. One area they are interested in is the “gadgets” or devices (e.g. measuring spoons, dosing cups, inhalers) that are used to help patients take their medicines. It is important that these devices are used properly to make sure the correct dose of medicine is taken.

The EuPFI devices work stream has designed a short questionnaire to understand what devices you or your child use and how easy they are to handle, to help to find ways of making the devices more user-friendly.

EPTRI supported the mainland Europe dissemination and review of survey questions by the young members of Italian, Albanian and Spanish YPAGs (Young Persons Advisory Groups), KIDS Bari, KIDS Albania and KIDS Barcelona respectively, to guarantee that the language is comprehensible and children-friendly.

The survey is addressed to boys and girls between 10 to 18 years of age and their parents.

It will take approximately 10-15 minutes to be completed. The survey is available in the following languages:

Share your experience with using medical devices (e.g. measuring spoons, dosing cups, inhalers) and contribute to the creation of more efficient and tailored devices for children!

 

All the activities will be supported by specific communication tools and activities designed for the specific target audiences with the aim to increase dissemination of the EPTRI initiatives among users, targeted stakeholders, and interested audiences as well as to widen the access to trans-national services. Special attention will be drawn to the transfer of knowledge and science communication to the lay community including patient/parent associations, patient advocates, and paediatric patients.