Cancer as a new chronic disease: Oncology nursing in the 21st Century

INTRODUCTION

Approximately half of all North Americans will be diagnosed with cancer at some point of their lifetimes (Brenner et al., 2020). With improved screening, detection and treatments, the number of survivors is growing exponentially and anticipated to reach ~18 million individuals in the United States by 2022 (Henley et al., 2020). Based on 2014 data, 63% of Canadians diagnosed with cancer are expected to survive for five or more years, compared to 55% in the early 1990s and 25% in the 1940s (Brenner et al., 2020). Typically, a cancer survivor is considered an individual who has completed curative-intent therapy, with ongoing care focusing on surveillance, prevention of adverse treatment-related effects and maintenance treatments such as endocrine therapy (Medicine & Council, 2006). However, in the last decade an entirely new survivor population is now emerging, that of people living with incurable cancer and living for years while receiving chronic treatments.

The aim of this paper is to introduce this population, offer examples of chronic anti-cancer therapies, consider potential needs of patients and family, and reflect on comprehensive oncology nursing practice and the expanding role in this new and complex population.

CANCER AS A CHRONIC DISEASE

A chronic disease is considered an “illness that may develop slowly, last a long time, (from months to years), be incurable, and be progressive and/or life-limiting” (Sciences, 2010). Examples of such conditions include arthritis, chronic kidney disease, chronic obstructive pulmonary disease, heart failure, diabetes, dementia, HIV/AIDS, multiple sclerosis, amyotrophic lateral sclerosis, and some forms of cancer. More than 40 per cent of Canadian adults report that they have at least one of seven common chronic conditions (Henley et al., 2020). A chronic disease cannot be cured, but symptoms such as fatigue, pain and sleep may be managed. Other concerns include physical limitations, psychological distress and associated poor quality of life. Not only do chronic diseases affect the individual in terms of their own health, but also caregivers, coworkers, family members, neighbors, and friends (Sciences, 2010).

Historically, in advanced cancers, chemotherapy treatments rarely extended life beyond one year (Jacobsen et al., 2017). Advances in molecular oncology with improved understanding of the drivers of malignancy have spurred the development of truly targeted agents. Since the 2000s, the availability of such agents has grown exponentially and is revolutionizing the care of chronic and advanced cancers. Important examples include the discovery of kinase structure variations, including bcr-abl leading to development of imatinib, improving the 10-year survival rate from approximately 20% to 80%–90% (Burger, 2019). The identification of Bruton’s tyrosine kinase (BTK) and development of inhibitors means that oral therapies are increasingly replacing chemotherapy-based regimens in patients with chronic lymphocytic leukemia (CLL) and mantle cell lymphoma (MCL). With a median follow-up of 60 months, ibrutinib versus chlorambucil progression-free survival was 70% versus 12% and overall survival 83% versus 68% (Burger et al., 2020).

Lung cancer was formerly considered a death sentence among those affected, but the clinical management has been transformed in the last decade with inhibitors targeting EGFR with response rates in the range of 65–90% (Bethune et al., 2010). In the intervening years, the list of relevant genes has rapidly expanded to include ALK, KRAS, PI3K/AKT/mTOR, RASMAPK, RET, MET, BRAF, NTRK/ROS1 and ERBB2 (Lindeman et al., 2018), thus directing additional targeted single and combination agents. One example is dabrafenib and trametinib in BRAF + MEK mutations (Majeed et al., 2021).

Breast cancer has historically benefited from identified targets (estrogen and progesterone receptors, ERBB2) and the advent of CDK4/6 inhibitors in hormone receptor positive metastatic disease is no exception. Progression-free survival rates of 28.18, 27.6 and 25.3 months are observed with the addition of abemaciclib, palbociclib and ribociclib, respectively, compared to hormone monotherapy (14.75, 14.5 and 16.0 months) (Goetz et al., 2017; Hortobagyi et al., 2018; Rugi et al., 2019).

Living with chronic advanced cancer

Taken together, cancer and its treatment have been revolutionized with the advent of targeted agents. Millions of people are now living for years with an incurable malignancy that is self-managed daily with periodic visits to the outpatient clinic for imaging, laboratory, and physical assessments. Accordingly, an expansion in the definition and scope of oncology nursing care is necessary to address the unique supportive care needs (Jacobsen et al., 2017). Some aspects for the oncology nurse to consider include unique physical symptoms of targeted therapies; psychological symptoms, uncertainty for the future and quality of life; caregiver concerns; and financial ‘toxicity’.

Physical symptoms

The physical symptoms associated with targeted therapies are considerably different than those of traditional chemotherapy agents. Neutropenia, pancytopenia, alopecia, and gastrointestinal effects such as nausea may occur, but to much lesser degree and severity. The oncology nurse needs to be aware of both common and infrequent side effects and adapt their assessments to address each agents’ profile. A complete symptom inquiry prior to initiating treatment for advanced cancer is essential to record persistent effects of any previous treatments in the curative setting. Physical symptoms such as pain, dyspnea, fatigue, nausea, and lack of appetite are known to negatively influence quality of life (Jacobson et al., 2017). ‘Screening for Distress’, a pan-Canadian effort aims to understand and improve patient symptoms by detecting and quantifying physical and emotional symptoms over time (Bultz & Johansen, 2011).

Additionally, a thorough health history is necessary to evaluate risk of future events. Using ibrutinib and atrial fibrillation (AF) as an example, ibrutinib is well tolerated, but with advancing treatment cycles adverse effects including neutropenia, dermatologic, diarrhea, bleeding, infection, AF, and hypertension may occur (Estupinan et al., 2021). Predictors of AF include prior history of AF, age over 65 years, hypertension, and dyslipidemia. Hence the importance of the health history. In a pooled analysis of clinical trials, the median time of AF onset in patients randomized to ibrutinib was 5.7 months, but the range of 0.3 to 40.2 months indicates considerable inter-patient variability (Brown et al., 2017). Oncology nurses should counsel patients about presenting symptoms of AF including syncope, palpitations, and chest heaviness, and the importance of prompt reporting. However, the majority of patients presenting to clinic are entirely asymptomatic. Accordingly, a complete cardiac examination should be performed at each clinic visit by the nurse. Auscultation with a stethoscope and traditional sphygmomanometer is preferred to automated machine testing in assessment of rate and rhythm of pulse. Medication compliance should be performed at each visit (including that of anticoagulation and anti-hypertensives), empty vs fed stomach, and any new medications to avoid drug/drug interactions. Lifestyle modifications such as diet and exercise may not only attenuate side effects, but provide the patient with a sense of empowerment. Health history and physical examination skills are integrated in all baccalaureate nursing programs across Canada. Accordingly, the oncology nurse has a duty to refresh and augment clinical competencies (Nursing, 2020). Oncology nursing expertise must expand from assessing toxicities associated with traditional chemotherapies to advanced knowledge and assessment skills to address off-target effects of molecularly-targeted agents.

Psychological symptoms, uncertainty and quality of life

The diagnosis of incurable, life-limiting cancer is a devastating experience, raising common concerns such as ‘how long do I have’ and ‘I don’t want treatments that will make me suffer’. The effectiveness, long treatment trajectory (potentially years), and tolerable side effect profile of targeted agents has complicated the oncology team’s ability to address these important concerns (Jacobsen et al., 2017). The examples cited above describing the many potential years of survival and good quality of life with BTK and CDK4/6 inhibitors highlight this challenge.

In patients with advanced cancer who are considering chemotherapy, research shows that information related to treatment options (98%), common side effects of treatment (99%), and the chance that the treatment will improve symptoms (96%) are desired by patients. Most are concerned about uncommon treatment side effects (91%), and both common (97%) and uncommon symptoms of the cancer itself (88%) (Hagerty et al., 2004). Honest disclosure early and repeated over several consultations assists patients to hear, to understand, and to gradually adjust to their individual situation. Nurses must be aware that patients’ understanding and goals may change over time with multiple treatment cycles. In 235 advanced-stage non–small-cell lung cancer patients, of those who initially defined treatment success as survival alone, 80% changed their goals to survival and improved quality of life, as they progressed through chemotherapy cycles (Nipp et al., 2016). Importantly, patients desire these conversations be balanced with hopefulness and a sense of control.

Whether or not these same goals apply to targeted chronic therapies is currently unknown and requires study to better understand and address common concerns. Additionally, with targeted therapies a therapeutic relationship can be developed that potentially extends over years. Conversations occurring over serial clinic visits regarding important life goals, family needs and individual wishes allows the oncology nurse to offer individualized support when disease advances (Rocque et al., 2019). This holistic knowledge allows for optimal supportive care along the disease trajectory, regardless of what difficulties the patient and family may face (Figure 1; Dans et al., 2021).

Figure 1.

Assessments and interventions to consider in cancer patients receiving chronic targeted therapies

In the last decade, early introduction to palliative care services has been repeatedly shown to reduce symptoms, improve quality of life, and potentially prolong survival (Temel et al., 2010). Given the tolerability and efficacy of targeted chronic therapies, discussions regarding palliative care may be delayed or dismissed entirely by the care team. Indeed, compared to patients receiving traditional chemotherapies, advanced lung cancer patients receiving targeted therapy reported they rarely discussed prognosis with their clinicians, and were highly likely to receive therapy in their last 14 days of life and, ultimately, die in hospital (Petrillo et al., 2021). Importantly, these patients reported similar levels of anxiety as the chemotherapy patients along their disease trajectory, despite their better side effect profile and longer survival. Psychosocial factors such as coping with uncertainty, loss of personal control, and experiencing ongoing reminders of the disease may affect patients similarly regardless of their treatment options. These findings emphasize the importance of holding ongoing conversations to help patients both live well and die well in the era of targeted treatments.

A common question in this author’s clinics is, ‘how long am I going to be taking this?” Honest conversations, such as ‘I don’t know, but as long as it is helping you’, may be useful. Sharing analogies to other chronic and widely understood conditions such as diabetes may aid patients’ understanding. For example, comparing regular monitoring of blood glucose with regular diagnostic imaging; adjusting insulin dose with adjustments to therapy; and needing to take a daily medicine to control the disease, possibly for the rest of one’s life, may be useful illustrations. Again, research has not yet addressed this necessary and evolving aspect of oncology care.

Caregivers

Caregivers provide essential care and support to cancer patients and must also be considered within the holistic nursing assessment (Booker et al., 2021). Better overall physical and psychological health has been observed in patients with an effective caregiver versus those without such support (Northouse et al., 2021). However, caregivers themselves may experience difficulties, associated with stress related to their loved one’s diagnosis and demands of caregiving. In newly diagnosed incurable cancer patients, caregivers (n = 275) reported more anxiety while patients (n = 350) reported more depression, with anxiety and depressive symptoms interrelated among these dyads (Jacobs et al., 2017). Given the interdependency of patient and caregiver wellbeing, it is essential to assess and ensure that adequate supports are available. Berry et al. recommend a framework for supporting families, which includes timely assessment of caregivers’ needs, education in relation to the caregiving role, empowerment of caregivers to become members of the care team, and support for caregivers to maintain a sense of control and self-efficacy (Berry et al., 2017).

Given the tolerable profile of targeted chronic therapies, many patients may continue to work. Employment (paid or unpaid) may be important to many cancer survivors. Beyond financial necessity, individuals living with advanced cancer may continue to work for a variety of nonfinancial reasons such as maintaining social relations and a sense of normalcy (Lyons et al., 2019). However, cancer survivors have reported feeling uncomfortable requesting workplace accommodations such as additional training, rehabilitation aids or technology (Stergiou-Kita et al., 2016) and may benefit from support in doing so. Detailed nursing assessments and referral to rehabilitation expertise as indicated may promote safe and acceptable solutions for both patient and employer.

Financial ‘toxicity’

Continued employment may be additionally important from a financial perspective. Despite the universal healthcare program in Canada, patients with cancer still face significant financial challenges. Not all aspects of necessary care are fully funded, or they may be capped and, as a result, 38%–71% of Canadian cancer patients report financial burden (Longo et al., 2021). A national survey of 901 Canadian cancer patients/survivors from 2016–2019 reported mean monthly out-of-pocket costs of $518CDN plus $179CDN for travel and parking (Longo et al., 2021). These costs, in addition to lost income for both patient and caregiver, create challenges, or ‘financial toxicity’. This term addresses both objective and subjective dimensions of costs incurred, reduced income, emotional distress, and impact on daily living from the altered financial situation due to cancer. Financial toxicity contributes to overall distress, with patients reporting financial problems four times less likely to report good QOL (Fenn et al., 2014). Indeed, more than 30% of advanced cancer patients rate financial distress as more severe than physical, family, and emotional distress (Delgado-Guay et al., 2015). Moreover, 69% of caregivers report adverse effects on work due to their family member’s disease (Grunfeld et al., 2004). The estimated economic contribution of unpaid Canadian caregivers in 2009 was ~ $26 billion. This does not include the opportunity costs (lost wages) of caregivers, the impact on caregiver health with the stress of caregiving and the implications of tax and social welfare costs (Hollander et al., 2009).

Risk factors associated with financial toxicity include female gender, younger age, ethnicity/race, security of current employment, socioeconomic status, insurance coverage, and distance from treatment centre (de la Cruz & Delgado-Guay, 2021). Additional consideration should be paid to groups well-known to experience barriers to healthcare including BIPOC (black, Indigenous and people of color) (Carr et al., 2020) and lesbian, gay, bisexual, transgender and others (Romanelli & Hudson, 2017). Fitch and Longo (2021) recommend that screening for financial toxicity be integrated in the routine screening for other toxicities and symptoms. Such screening would be performed with a validated tool at the initial consultation and over the course of the illness. As those living with chronic cancer are at accumulating risk of financial toxicity over time and ongoing cancer therapies, reassessments should be regularly performed. Oncology nurses should not only be aware of resources available at the treatment centre, but also how to assist the patient navigate community-based resources regarding financial management. Referral pathways or dedicated personnel such as financial navigators or drug-access coordinators can reduce both financial toxicity and patients’ stress (Shankaran et al., 2018; Watabayashi et al., 2020).

The future of chronic targeted therapies and oncology nursing

Patient-centred care in the context of chronic diseases includes being attentive to patient’s psychosocial, as well as physical needs; exploring the patient’s concerns and priorities for care and legitimizing their experiences; developing a partnership between the patient and care team, and facilitating active patient involvement in decision making; and coordinating care across professionals, facilities, and support systems (Nasmith et al., 2013). Oncology nurses provide an essential linkage between the patient, family, oncology providers and community by knowing the patient and family situation, involving other supportive care providers early, identifying and mobilizing community resources to support quality of life, and promoting healthy living (Young et al., 2020).

As targeted therapies continue to evolve, oncology nurses will require continued education to understand mechanisms of action, off-target adverse effects and efficacy of these agents. This knowledge will allow oncology nurses to provide individualized care to the patient and family, as well as education and support for decision-making related to treatment options (Cummings et al., 2018). The future of oncology nursing lies in recognizing the technical world of molecular oncology and bridging this knowledge to the patient and family, providing individualized supportive care to prevent and manage the physical and psychological symptoms across the continuum of care (Young et al., 2020).