Patient-centric cancer care

Prof. Daniel Kelly is President of the EONS (European Oncology Nursing Society)

According to the World Health Organization, death from cancer is becoming more common in Europe with a 6.6% rise between 2000 and 2015. This is despite improvements in prevention, early detection and cancer treatment. Many cancer patients have also been taking part in a quiet but fundamental shift in cancer therapy, whereby patients take oral chemotherapy at home.

This seems very patient-centric as it means reduced hospital attendance for intravenous infusions, with its associated discomfort and risk of infection. The importance of this revolution in cancer therapy should not be under-estimated as over 25% of the 400 cancer chemotherapy agents in development over recent years were designed to be taken by mouth. But while oral chemotherapy has many positives, it also requires people to adhere closely to prescribed regimens in order to gain maximum treatment efficacy. Patients also need to understand the safety implications and toxicity risks associated with handling these agents (both for themselves and those closest to them).

This change means not inconsiderable expectations being placed on cancer patients, given that many are older and may already be taking several other medications for co-existing chronic or acute conditions. Misconceptions also commonly exist around the nature of oral chemotherapy (such as that it is a gentler option, or less toxic than intravenous drugs), meaning that there is a need for specialist cancer nurses, medical oncologists and pharmacists to educate patients effectively. Being patient-centric means that we must ensure the design and availability of information resources that are evidence-based and draw on personal experiences of managing oral chemotherapy safely.

Being able to receive cancer therapy at home will bring many benefits to patients who can be prescribed oral chemotherapy; it is less disruptive to their everyday lives and can provide them with a sense of control over their disease. However, they must also know how to recognize and manage side-effects and to be able to seek help and advice when necessary. This is the real test of a truly patient-centric cancer service, regardless of how the treatment itself is delivered.

It is known that adherence to any medication is complex and will be shaped by a range of factors that impact an individual’s motivation or willingness to take pills as prescribed. Situational and personal factors may disrupt adherence schedules, with doses being omitted to fit with personal or social activities, or simply due to forgetfulness. Despite the fact that the effectiveness of oral chemotherapy in combatting cancer may require very strict adherence, it is known that adherence of cancer patients may vary widely depending on regimens and side effects. To address this we must consider both the reasons behind this variation, and what can be done to improve adherence. One solution is to ensure that patient and carer education is standardised at a high level. Furthermore, we can arrange the provision of treatment plans that include adherence monitoring.

The safety of oral chemotherapy agents is another concern that requires practical advice to be available based on users’ experiences. Most patients have a written plan, telling them when to take their tablets. A practical source of advice is needed so that professionals, such as specialist cancer nurses, can go through this with patients to make sure they have understood the information, and patients can return to these information resources as often as they need.

There are common pieces of advice already emphasized such as making sure that the patient knows they must take the oral chemotherapy exactly as their nurse, doctor or pharmacist has advised. This includes taking it on the right day, at the right time and with or without food, as directed. It is also important that patients know to keep the chemotherapy drugs in their original packaging and to store any chemotherapy drugs safely away from children or animals.

National guidance does exist across Europe and it is important that we both abide by it and work to improve it by increasing our understanding of the risks and challenges. We know the safety issues that arise commonly involve errors at the time of prescribing, such as wrong dosage, frequency, quantity or duration of treatment. But it is also a concern that errors on the part of patients, such as under- or overdosing with oral chemotherapy may currently be under-estimated.

One important quality measure is the availability of adequate advice and support for patients in rural areas, living some distance from their nearest specialist cancer centre. This support should include information on managing oral chemotherapy treatment safely at home, understanding toxicity risks and the need for regular assessment, reporting side-effects in a timely manner and ensuring that the primary care team, including their closest carers, are fully aware of their situation.

The future of cancer treatment in Europe is likely to include more oral chemotherapy agents being prescribed. This could be seen as a quiet revolution that makes cancer care less hospital focused and more akin to a patient-centric philosophy. All revolutions have a cost however, and oral chemotherapy presents a series of unique challenges in terms of safety, adherence and information provision.

As more and more people in Europe are prescribed this form of cancer treatment, we need to recognise the need for specialist cancer nurses who can liaise with people at home as well as in hospital contexts. The European Oncology Nursing Society is undertaking the RECaN (REcognising Cancer Nursing in Europe) project to ensure that the role of cancer nursing is better understood and recognised. Nurses are playing a key role in the oral chemotherapy revolution, and we must support them in the promotion of patient-centric care and support across Europe.