7.4 Role of Evidence‐Based Practice in Caring for Patients with Cancer and Their Carers

The multi‐faceted impact of cancer is recognised globally due to its significant burden on personal and public health. From diagnosis to living and/or dying with cancer, this disease can profoundly impact patients and their informal caregivers (Santin et al. 2014). Dunniece and Slevin (2000) suggested that few things in life can surpass the trauma of receiving a cancer diagnosis, as expectations of future living can be negatively impacted by the threat of impending death. Cancer impacts not only a person’s physical health but also their holistic wellbeing, alongside that of their informal caregivers (Treanor et al. 2019). Without a doubt, it can be a time fraught with complexity, turmoil and uncertainty.

The provision of high‐quality holistic nursing care is imperative for all patients with a diagnosis of cancer. Central to this is providing evidence‐based care, and this approach has steadily gained momentum across all health and social care disciplines from its inception. One of the key recommendations highlighted in ‘A Cancer Strategy for Northern Ireland 2022–2032’ (Department of Health Northern Ireland 2022) for optimal cancer care is the development of an appropriate infrastructure to deliver a robust research function, a key component of EBP. It acknowledges that participation in research improves patient outcomes across all aspects of the patient pathway. It is foundational to the delivery of care excellence and not an add‐on to care delivery.

7.5 Providing Evidence‐Based Care as a Clinical Nurse Specialist

The role of the CNS is diverse and multi‐faceted within healthcare. Gordon et al. (2012) indicated that CNSs in the United States of America (USA) encompassed the EBP roles of expert clinician, educator, team leader and chaplain. They believed strategies they employed using EBP not only improved patient care but also decreased costs overall. It has been internationally recognised that the CNS role is ideally placed to act as a link between evidence and its implementation in practice (Profetto‐McGrath et al. 2010). The European Specialist Nurses Organisations (ESNO) (2015) compiled ‘Competences of the CNS’, and inherent in this is their involvement in research. They suggested that this supports CNSs to evolve practice by adding to the evidence base and enhancing patient care through their involvement in research.

CNSs are pivotal members of the multidisciplinary team (MDT). They hold a valued and privileged position, accompanying the patient and their family from the point of a cancer diagnosis through treatment, into follow‐up and hopefully on to living with and beyond cancer. The presence of a robust evidence base has never been more essential due to the evolving nature of the CNS role and the complexities related to holistic symptom management. This is supported by Benea (2014), who highlights the importance of research competencies as being core to CNS practice. La Salsa et al. (2007) suggest that the knowledge and expertise of the CNS are crucial to the quality of care a patient receives. They indicated their contribution to improving patient care is critical through linking professional practice with EBP and outcomes.

7.6 Clinical Application of Evidence‐Based Practice by Clinical Nurse Specialists

The CNS’s contribution in delivering evidence‐based care is not a new phenomenon. CNS practice has been described as comprising multiple roles, including clinical expert, educator, consultant, leader, administrator and researcher (Kerr et al. 2021). CNSs make a significant contribution to oncology services, with reports of positive patient experiences (Alessy et al. 2021). Involvement in recruiting patients to a research study reflects effective partnerships between clinical practice and academia. The CNS is appropriately placed to lead on this activity and introduce the research‐related concepts. This facilitates the next steps of the study and the overall study design, ensuring that the patient remains central to all activities.

It is essential that the CNS embraces and promotes research, as this will progress the evidence base for cancer treatment and care. CNSs can be involved in the conduct of research in a range of ways, which may include direct or indirect involvement. Direct involvement may include leading on research studies or participating in an aspect of a research study, such as inviting participants to consider engaging in research, data collecting, data analysis, dissemination and implementing findings. Indirect involvement may include peer‐reviewing research protocols and co‐authoring research papers. A systematic review of published intervention research led or facilitated by cancer nurses indicated that the majority were delivered by specialist cancer nurses (Charalambous et al. 2018), highlighting the potential role of the CNS in research. The CNSs role is valuable as a conduit between research and clinical teams by promoting research engagement with potential participants (Gettrust et al. 2016). CNS are considered agents of change, with a crucial role in supporting the adoption of research findings in practice (Kristensen et al. 2016).

7.7 Cancer Research and Clinical Trials

Advances in cancer treatment are among the factors contributing to increasing cancer survival rates (Arnold et al. 2019; Siegel et al. 2022). CCTs are a vital part of the research tapestry and translate practice‐based ideas and pre‐clinical laboratory evidence into approved protocols, recruiting patients to determine the safety and effectiveness of an intervention to find better approaches in cancer prevention, screening, diagnosis, treatment, surveillance, quality of life and care. There is growing evidence that a hospital’s research culture and activity also correlate with lower mortality outcomes for emergency admissions (Ozdemir et al. 2015), reduced mortality and improved quality outcomes and hospital performance (Jonker and Fisher 2018), better processes of care (Boaz et al. 2015) and better outcomes for all patients with colorectal cancer (Downing et al. 2017). In the cancer treatment setting, many milestones have been achieved through trials ranging from the development of the human papilloma virus (HPV) vaccine for the prevention of cervical and other cancers to immunotherapy and chimeric antigen receptor (CAR) T‐cell therapy and the use of cancer genomics in precision medicine (Danovi and Sadanand 2020; National Cancer Institute 2020).

CNSs located in cancer treatment centres are likely to encounter drug trials, which are fundamental to the drug development process, systematically evaluating the safety and efficacy of novel products or combinations through Phase I to Phase IV trials. A key objective of Phase I trials is to identify the recommended dose for the next phase. In addition, drug safety and pharmacological characteristics are evaluated. Phase II trials continue to assess toxicity and efficacy. With increasing numbers of patients participating in successive phases, Phase III trials usually involve hundreds of patients randomised to either the study treatment arm or the control arm, the current best standard of care. After a positive Phase III randomised controlled trial, a dossier of evidence is submitted to the relevant national regulatory authority for marketing approval (Hackshaw and Stuart 2020). Phase IV trials occur after a drug is licensed, assessing longer‐term safety and effectiveness.

Patients have reported positive outcomes in relation to their involvement in CCTs. Results of a survey in England, UK, identified that research participants were more likely to feel informed about their care and condition, reported better interactions with staff and were almost twice as likely to have been assigned a CNS (McGrath‐Lone et al. 2015). Benefits of participation reported by patients included access to the intervention itself and additional monitoring. Patients viewed participation in trials positively, and some actively chose to attend a teaching hospital to increase the opportunity to participate in a trial.

There is increasing recognition that people affected by cancer are vital members of the research team, not just on an individual participant basis but also with a wider influence across the cancer research agenda, including CCT portfolio development, research priorities, study design, recruitment strategies, patient documents and dissemination of results (Pii et al. 2019). Patients are often advocates for trial participation. Working in partnership with patients and carers is essential to enhance the quality and appropriateness of research (Brett et al. 2014). CNSs are in an ideal position to signpost interested patients and carers to patient advocacy opportunities in research, as their insights into their unmet needs means they have a key contribution in identifying and reinforcing research priorities for patients, carers and families impacted by cancer.

7.8 Cancer Clinical Trials, Research Nurses and the Role of the Clinical Nurse Specialist

In the USA, whilst there are efforts to gain a greater understanding of attitudes and roles of oncology advanced practitioners (including CNSs) relating to CCTs, this role dimension has been largely undocumented in the last decade (Braun‐Inglis et al. 2022). Time constraints may impact discussions about clinical trials; however, cancer nurses have reported barriers such as a lack of confidence in communicating clinical trials and have indicated the need for specialised training to increase confidence and knowledge to support patients through decision‐making (Ulrich et al. 2012; Flocke et al. 2017). Local roles along the patient pathway will vary, but research nurses and CNSs are vital mutual resources. CCTs are conducted in a scientific, regulated and monitored manner to safeguard research quality and protect participants. This time and resource‐intensive activity requires investment in clinical research infrastructure, including expanding the cancer research nurse workforce (Ness 2020; Hong et al. 2021). The research nurse and the clinical trial co‐ordinator are key members of the research team, supporting both the conduct of the study at the local site and care of patients participating in clinical trials (Purdom et al. 2017). Study‐specific training is required alongside knowledge of national and local research regulations, good clinical practice (GCP) (International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) 2016) and the ethical standards of the Declaration of Helsinki (World Medical Association 2013).

Fisher et al. (2022) reported that the most frequent activities of the research nurse were recruitment of research participants, monitoring participants for adverse events and providing nursing leadership within the interdisciplinary team. The CNS and research nurse roles may share some similarities but are distinct and can be synergistic in providing care. A shared care model has been described (Thornton 2017), outlining the CNS having a role in discussing CCTs with the patient. Alongside improved patient experience, it is proposed that an added benefit of this teamwork approach may be improved nurse experience and shared learning, specialist knowledge, skills and experience (Lavender and Croudass 2019). The cancer CNS should be familiar with the clinical trial process in order to effectively collaborate with researchers and research nurses.