People receiving chemotherapy can experience unpleasant side effects.1 These can have a negative impact on their quality of life and may disrupt treatment.2 3 People are less likely to report side effects when they are not hospitalised, as they are not in constant contact with healthcare professionals.4 5 A multidisciplinary team in Leeds, England, has developed a system called electronic patient self-Reporting of Adverse events: Patient Information aDvice (eRAPID), which allows people to report any side effects and receive advice on self-management. People who used eRAPID were less severely impacted by side effects in the early stages of their chemotherapy treatment, than those who did not use the system,6 and it has been adapted for people undergoing radiotherapy,. 2 6
Around 375,000 people are diagnosed with cancer each year in the UK,7 and 28% of them will receive chemotherapy as part of their treatment.8 While treatment with chemotherapy saves many lives, its side effects can affect people’s quality of life and disrupt the delivery of additional treatments.
Common side effects of chemotherapy include nausea and vomiting, mouth ulcers, diarrhoea, hair loss and neutropenia (having a low number of neutrophils, a type of white blood cell in the bloodstream),9 which leads to a weakened immune system and makes people vulnerable to infections.3 Neuropathy is another common long-term effect of chemotherapy, developing when nerves in the body’s extremities are damaged. This condition can be particularly challenging for people whose work is based around using their hands.2 10
Even side effects that are described as ‘mild’ in medical jargon, because they do not require hospitalisation, can still impact people’s quality of life.2 Some side effects, such as severe mouth ulcers and infections caused by neutropenia, can disrupt treatment or lead to emergency hospital admissions.2 11
Data on the side effects of cancer treatment, including chemotherapy, are often collected during clinical trials. Although data could be used to improve patient outcomes and experiences, data are not always collected when a person is undergoing treatment.6
It can be difficult to collect information on side effects in real time. When a person is at home, for example, a healthcare professional may not be able to advise them on how to alleviate their symptoms.4 6 People with cancer could also delay reporting symptoms – even when they are severe – to healthcare professionals (HCPs), especially if they feel unsure about whether their symptoms require intervention.4 5
A multidisciplinary team of HCPs and researchers at the University of Leeds in England, with support from the National Institute of Health and Care Research, developed an online platform which collects reports of side effects from people undergoing cancer treatment,.2 6 The development of the system, known as electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID), was aided by a group of people living with cancer, who had experience of receiving chemotherapy.11 It aims to improve the experience of people undergoing chemotherapy while enabling early intervention and collecting more data on the impact of side effects.2 6
People can access eRAPID via computer, mobile phone or tablet. The online platform will ask them a series of questions about undergoing chemotherapy, including how they are feeling and whether they are experiencing any of the common side effects of treatment.2 6 People with cancer and HCPs fed into the development of these questions.12
It is recommended that the eRAPID questionnaire is answered once a week, but information can be submitted at any time.2 Once information has been entered, the system uses clinical algorithms to provide a person with advice on how to manage their symptoms.4 6 In many cases, this will include self-management techniques, but, where more serious problems are reported, they will be prompted to contact their care team as soon as possible.2 6 11
The system also links a person’s responses to their electronic medical record, so HCPs can instantly access information on how they are coping with chemotherapy.2 6 If a severe side effect that requires medical attention is reported, HCPs will receive an automatic alert so they can take swift action.
What has been achieved?
In 2016–17 eRAPID was trialled, with people affected by breast, colorectal or gynaecological cancer taking part.6 Participants reported that they appreciated the immediate access the platform provided to advice and reassurance on how to deal with side effects.2 6 In cases where they experienced more severe effects, users also felt empowered to contact their care team and ask for help or advice, as the system advised them to do so. In addition, all of the weekly questionnaires were completed by 70% of people enrolled in the trial.2
People who used eRAPID were less impacted by their side effects in the early stages of their chemotherapy treatment compared with people who did not use the system.6 They also reported improved health and more confidence in managing their side effects at home.2 6
Since the initial trial, eRAPID has also been adapted for use by people receiving radiotherapy, with a pilot study conducted in 2018.6 13
There are plans to roll eRAPID out to people receiving chemotherapy for metastatic breast cancer and lung cancer in Leeds.2 The multidisciplinary team also hope to adapt the eRAPID system for people who have received cancer surgery.2 6 14
- The website of the research group which developed eRAPID
- An article on the eRAPID research programme, published by the National Institute for Health and Care Research
Professor Galina Velikova, Professor of Psychosocial and Medical Oncology, University of Leeds, G.Velikova@leeds.ac.uk
- Macmillan Cancer Support. 2018. Side effects of chemotherapy. [Updated 30/09/18]. [Accessed 30/05/22] Available here: https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/chemotherapy/side-effects-of-chemotherapy
- Velikova G. 2022. Interview with Catherine Hodge at The Health Policy Partnership. 27/05/2022
- Mort D, Lansdown M, Smith N, et al. 2008. For better, for worse? A review of the care of patients who died within 30 days of receiving systemic anti-cancer therapy. London: National Confidential Enquiry into Patient Outcome and Death
- Absolom K, Holch P, Warrington L, et al. 2017. Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID): a randomised controlled trial in systemic cancer treatment. 17: 318
- Warrington L, Holch P, Kenyon L, et al. 2016. An audit of acute oncology services: patient experiences of admission procedures and staff utilisation of a new telephone triage system. 24: 5041-48
- National Institute for Health R. Towards Safer Delivery and Monitoring of Cancer Treatments. Electronic Patient Self-Reporting of Adverse-Events: Patient Information and Advice (eRAPID).
- Cancer Research UK. Cancer incidence statistics. [Accessed March 19] Available here: https://www.cancerresearchuk.org/health-professional/cancer-statistics/incidence#heading-Zero
- Cancer Research UK. 2017. Cancer treatment statistics. [Updated 01/09/17]. [Accessed 12/07/21] Available here: https://www.cancerresearchuk.org/health-professional/cancer-statistics/treatment#heading-Two
- Blood Cancer UK. 2022. Neutropenia. [Accessed 01/06/22] Available here: https://bloodcancer.org.uk/understanding-blood-cancer/blood-cancer-side-effects/neutropenia/neutropenia/#:~:text=Neutropenia%20is%20a%20condition%20where,called%20neutropenia%20or%20being%20neutropenic
- Seretny M, Currie GL, Sena ES, et al. 2014. Incidence, prevalence, and predictors of chemotherapy-induced peripheral neuropathy: A systematic review and meta-analysis. PAIN® 155(12): 2461-70
- Holch P, Warrington L, Bamforth LCA, et al. 2017. Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment. Annals of Oncology 28(9): 2305-11
- Holch P, Warrington L, Bamforth LCA, et al. 2017. Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment. 28: 2305-11
- Holch P, Pini S, Henry AM, et al. 2018. eRAPID electronic patient self-Reporting of Adverse-events: Patient Information and aDvice: a pilot study protocol in pelvic radiotherapy. 4: 110
- Kennedy F, Absolom K, Clayton B, et al. 2020. Electronic Patient Reporting of Adverse Events and Quality of Life: A Prospective Feasibility Study in General Oncology. JCO Oncology Practice 17(3): e386-e96