There are currently limited resources available to paediatric cancer centres for patient and carer chemotherapy education. Consumer medicines information (CMI) is often inappropriate as paediatric chemotherapy protocols are complex and many chemotherapy medications in paediatric oncology are used outside of their approved indications.
To identify patient/carer information needs and their expectations and preferences regarding written paediatric chemotherapy information.
A questionnaire was developed to collect data on families’ preferred form of information delivery, type and amount of written information, and the format and depth of information. Families were asked to comment on 2 examples of publicly available paediatric chemotherapy information leaflets and a CMI. The questionnaire was available to families at a tertiary paediatric cancer centre from January to March 2016.
Twenty two completed questionnaires were returned. Fifty percent of families preferred printed information whilst 45% preferred both printed and electronic versions. Verbal counselling by a pharmacist in addition to written information was considered important by 91% of families. Information families considered extremely important were the types (95%), time of onset (77%) and likelihood (73%) of side effects, as well as what to do when they occur (82%). Parents preferred a simple layout of information with bullet points, tables and clear headings. They valued specific and practical information involving how each medication works, explanation of symptoms, the reversibility of side effects and the role of supportive care medicines. Although families generally welcomed all available relevant information, they disliked the CMI for including unnecessary information and the lack of explanation about side effects.
The publicly available paediatric chemotherapy leaflets and CMI do not adequately address the information needs of paediatric oncology families. This information can be used to development chemotherapy information which meet families’ preferences to improve the relevance and quality of patient education.