Description

Parents’ Experience of Administering Vosoritide▼

This study used qualitative interviews and a thematic analysis to understand the parent experience of using vosoritide. Overall, 15 parents from France and Germany took part. For these parents, physicians and patient advocacy groups were the leading source of information regarding treatment options.

In general, parents took the decision to initiate treatment, but where the child was involved, they often had the final say. With regards to initiation of vosoritide and injection training, the experience and support provided varied considerably both across and within countries. Administering vosoritide at home was reported as a considerable psychological challenge for most parents, but eventually overcame the barriers.

Standardising the training and support offered to families is important to improve their confidence in managing vosoritide at home. Addressing challenges at an early stage can mitigate obstacles and reduce the risk of non-adherence.