Improving information about oral chemotherapy to enhance self-management

This project was conducted between 2009-2011.

Aim of project

This project explored how information on oral medications is given to myeloma patients and how this information helps them manage their treatment.

Project summary

If patients do not understand information about their treatment then the treatment might not work, or this could lead to serious unexpected health problems. This research study looked at how healthcare staff inform myeloma patients about their chemotherapy, which patients take in the form of tablets at home. The study asked 64 myeloma patients to fill in a questionnaire about what they thought about the information they had been given.

The study found that nearly all patients were happy with the information they had been given, especially written information. They felt confident about taking their chemotherapy tablets, most of them knew what to do and who to contact if the tablets caused problems, most knew what to do if they had forgotten to take tablets, and most knew when they should take their tablets. However, a minority of patients did not understand what to do and this is worrying. Some patients also found the information they were given overwhelming.

Ten consultations with staff, patients and Clinical Nurse Specialists were audio-recorded, and three clinical nurse specialists and two patients were interviewed for this study as well. By analysing the information collected it was found that although initial consultations are important for patients and their family members it is also important that information is given if and when it is needed over time; and it is mostly clinical nurse specialists who give patients information.

This project suggests that training programmes for health care staff, better tools for staff to use when assessing patients, and home visits during the first days of treatment would make life easier for patients and for staff. This approach would likely be more effective in preventing any difficulties that could arise. It would also be beneficial if oral chemotherapy tablets were manufactured in higher doses so that patients do not have to take as many tablets.

Who was involved with the project

The principal investigator was Dr Arber, Senior Lecturer in the Faculty of Health and Medical Sciences at the University of Surrey.

How this project will help Myeloma patients

This project has demonstrated that early home-based clinical nurse specialist visits with patients embarking on oral chemotherapy could help address patient’s specific problems and concerns.

Acknowledgements and funding

This work was funded by a Myeloma UK Health Services Research grant.


This work was presented at the London Medical Sociology Group at King’s College London on 10th November 2010. The work was published in the European Journal of Cancer Care which you can find here.