A national patient-held treatment record for patients receiving systemic anti-cancer therapy (SACT) has recently been launched to support patients with cancer. It has been developed by Cancer Research UK (CRUK) in collaboration with the UK Chemotherapy Board (UKCB) and has had patient involvement at each stage of its development.
Patients receiving SACT are often overloaded with information relating to their cancer journey, including their diagnosis, treatment, side effects, financial support, etc. This information is often delivered by multiple health professionals and can be overwhelming for patients. In addition, information about treatment and potential side effects can be critical for other health professionals if the patient is admitted to hospital in an emergency, or if the patient seeks medical advice from a health professional without access to information relating to their diagnosis and treatment. The treatment record provides a place to document the patient's regimen, side effects and contact numbers. A patient-friendly version of the UK Oncology Nursing Society (UKONS) telephone triage tool is also included to assist with early symptom reporting.
Across the UK, different treatment records of variable standards and content have been developed. The UKCB recognised a need to have a standardised approach, adopting best practice from across the UK. UKCB and CRUK have developed, tested and published the resulting document.
Patients were at the heart of this project. We consulted people affected by cancer to ensure the record would be relevant and reassuring, while empowering them to be better informed. We also asked health professionals what information it would be most practical and realistic to record in a busy clinical environment.
In the initial stages, we consulted the CRUK's ‘patient sounding board’ to test our assumption that a record would be worthwhile. We then ran two surveys: one for 151 people affected by cancer and a second for 188 health professionals. Of those:
Feedback from patients who have used treatment records included the following:
‘Having one made me feel as though I was involved in what was happening to me. It came in very useful when I was admitted to hospital at 2am—I gave the doctor my book with all my and the oncologist's notes and he said it was really useful to assist treating me… It helped me also with my GP to get the correct medications for the side effects I was experiencing.’
The surveys developed our understanding of how patients and professionals use treatment records. They told us what was most helpful about having one, what information could be recorded, and about the barriers to using them effectively. This was invaluable and informed our prototype. Ensuring the record was clear and accessible was a priority. Feedback was essential to helping us achieve this in the final version.
We want to raise awareness that ‘Your Cancer Treatment Record’ is now available. It was launched in autumn 2018 at the UKONS and the British Oncology Pharmacy Association (BOPA) annual conferences. Approximately 20 000 copies were ordered in the first 3 months.
To help health professionals use the record effectively with their patients we have created video guidance for them. This idea came about because only 30% of patients involved in our survey thought the purpose of the treatment record was clearly explained to them.
We will evaluate the impact of the treatment record this year to ensure it is supporting patients and health staff to have more meaningful conversations. Future developments for the record include the potential for an app.