Pharmacists recognise how important it is to ensure an accurate and current medication history for patients before commencing therapies or making recommendations on how to manage conditions. This is arguably even more important for people with cancer who are undergoing systemic anticancer therapy (SACT) — a group for whom this already challenging as access to specialist medical records is often limited, and the patient’s medicine can frequently change. In addition, the narrow therapeutic index of many cancer treatments can mean patients present to healthcare professionals more often, owing to adverse events or concerns about interacting medicines.
Patients receiving SACT are often overloaded with information relating to their cancer journey, including diagnosis, treatment, side effects and financial support. This information is often delivered by multiple healthcare professionals and may be overwhelming for patients. Information about treatment and potential side effects can be critical if the patient is admitted to hospital in an emergency or if the patient seeks medical advice from a healthcare professional who does not have access to the patient’s cancer diagnosis and treatment.
In October 2018, a national handheld treatment record was launched to support patients receiving cancer treatment, along with the healthcare professionals they may come into contact with. The record was developed by the charity Cancer Research UK in collaboration with the Royal College of Radiologists’s UK Chemotherapy Board, and included patient involvement at each stage of its development.
The tool can be used to record the patient’s anti-cancer treatments and supportive medicines, contact numbers and side effects. A patient-friendly version of the UK Oncology Nursing Society (UKONS) telephone triage tool
is included to assist with early symptom reporting.
When developing the handheld treatment record, patients affected by cancer were consulted to ensure the records would be relevant and reassuring, while empowering them to be better informed. Healthcare professionals, including pharmacists, were also asked about the information that would be most practical and realistic to record in a busy clinical environment.
In addition, two surveys were conducted — one of 151 people with cancer and another of 188 healthcare professionals, which confirmed the need for this resource. Of the people who participated:
- 26% of patients received a treatment record;
- 31% of patients made their own record as they needed somewhere central to record important details;
- 80% of healthcare professionals indicated they would use a record with their patients if one was available.
Feedback from patients who utilised the treatment records was also received. One patient said:
“Having [a record] made me feel as though I was involved in what was happening to me. It was very useful when I was admitted to hospital at 2:00 [in the morning]. I gave the doctor my book with all my and the oncologists notes and he said it was really useful to assist treating me. You forget the side effects if you don’t write them down, because there is so much going on. It helped … my GP to get the correct medicines for the side effects I was experiencing.”
The surveys helped develop our understanding of how patients and professionals use treatment records. They told us what was most helpful about it, what information could be recorded and about the barriers to using them effectively. This was invaluable in helping us to identify and prioritise what information should be included and informed our prototype. Ensuring the record was clear and accessible was a priority, and the feedback shared at this stage was essential in helping us achieve this.
When piloting the handheld treatment record, our aim was to raise awareness of its availability and that the record was finalised. It was launched at the UKONS and the British Oncology Pharmacy Association annual conferences, where the response was very encouraging. Approximately 50,000 copies were ordered in the first six months after its launch, and patients and healthcare professionals have provided extremely positive feedback.
Evaluating the impact of the treatment record is our current priority and a formal evaluation period was completed in January 2020. Future developments for the record include the potential of an electronic app.
The treatment record can be ordered from: https://publications.cancerresearchuk.org/categories/your-cancer-treatment-record.
Simon Purcell (on behalf of Cancer Research UK and the Royal College of Radiologists’s UK Chemotherapy Board), medical manager, Pfizer Oncology
Conflict of interest
Simon Purcell is an employee of Pfizer UK. This project was conducted on behalf of the the Royal College of Radiologists’s UK Chemotherapy Board and received no funding from any pharmaceutical company.