Design of LONGEVITI (LIVinG with chrONIc cancEr Therapies): A Narrative Arts-Based Study of Living with Advanced Cancers Treated with Targeted Therapy

Abstract

Today, cancer treatments and the resultant illness experience is rapidly changing. In the early 2000’s breakthroughs in cancer biology and technology allowed the detection of molecular tumor characteristics promoting cancer growth, metastasis and cell immortality. These discoveries prompted the development of oral drugs specifically designed to block these targets. These oral targeted medications are ‘cytostatic’ as the disease remains in ‘stasis’ and does not grow or advance. As a result, advanced cancers that were formerly rapid death sentences are now treated with agents so effective that people are living for years with stable advanced cancers. Survivorship is commonly interpreted to define a state of being for individuals cured of early stage or localized cancers, commonly treated with surgery, chemotherapy and/or radiation. For those living with incurable chronic cancer, the cancer ‘battle’ is different from that of curable individuals. Targeted therapies continue until diagnostic imaging or bloodwork demonstrates the cancer is becoming resistant. Accordingly, incurable chronic cancer and evolving physical effects of the disease remain powerfully omnipresent for the remainder of the individual’s life. The aim of this research is to explore the day-to-day experiences of people living with advanced chronic cancers while being treated with self-administered oral targeted therapies. We will collect data through both qualitative interviews and arts-based methods. Semi structured in-depth interviews will explore people’s experiences of living with advanced cancers and receiving targeted therapies. The LIVinG with chrONIc cancEr treatments (LONGEVITI) study will enhance our understanding of the experiences of individuals self-managing advanced cancer with targeted medications. It will also assess the acceptability of innovative research methodologies. Ultimately, the goal is to advanced knowledge about this new and complex chronic disease among patients, healthcare providers and the general public.

Today, cancer treatments and the resultant illness experience is rapidly changing. In the early 2000’s breakthroughs in cancer biology and technology allowed the detection of molecular tumor characteristics promoting cancer growth, metastasis and cell immortality (Hanahan, 2022). These discoveries prompted the development of oral drugs specifically designed to block these targets. These oral ‘targeted’ medications are ‘cytostatic’ as the disease remains in ‘stasis’ and does not grow or advance. As a result, advanced cancers that were formerly rapid death sentences are now treated agents so effective that people are living for years with stable advanced cancer (Pituskin, 2022). For example, in chronic lymphocytic leukemia, oral targeted medications prevent disease progression rates to 78% versus 25% (Burger, 2019). Metastatic lung cancer was formerly considered a rapid death sentence, but now with targeted medications tumors stop advancing approximately 90% of the time (Bethune et al., 2010). In metastatic breast cancer, the addition of targeted medications more than doubles the time it takes for tumors to start re-growth (Rugo et al., 2019). As a result of these successes, advanced cancers are now becoming chronic diseases necessitating new forms of management and frameworks of survivorship by patients, families, and healthcare teams.

New Problems, New Solutions

Similar to other chronic diseases, advanced cancers are not curable but instead require ongoing management of symptoms and treatment. With targeted therapy, the individual patient is solely responsible for medication management (inclusive of scheduling of doses, fed/unfed state to facilitate absorption, potential drug interactions, blood sample scheduling at community laboratories and organizing virtual appointments) alongside symptom monitoring and recognition of evolving mild, moderate or severe health situations (Burger, 2019; Heng et al., 2010). Targeted therapy pills are taken once or twice per day in 3 to 4-week ‘cycles’, with diagnostic imaging (CT [computed tomography] or nuclear bone scans) or bloodwork performed every 4-6 cycles to evaluate disease stability (Johnston et al., 2019; Moulson et al., 2024; Rugo et al., 2019).

Although the side effects of targeted medications are not as debilitating as those experienced with traditional chemotherapy agents, they are not without considerable risk requiring daily monitoring, symptom recognition and potentially urgent intervention by the patient. Prevalence of side effects commonly increases the longer an individual is exposed (Pituskin, 2022). In addition to medication side effects, patients often experience symptoms associated with advanced cancer, including pain, shortness of breath, nausea, fatigue, sleep disturbances, weight loss and physical deconditioning which may be progress and negatively impact the ability to perform essential activities of daily living (Pituskin, 2022).

Cancer treatments, once only provided in specialty settings, are now widely distributed across sites of home and community. Accelerated by the COVID-19 pandemic, responsibility for health care provision is being decanted to the individual, commonly termed ‘self-care’ (Abdelmutti et al., 2024; Attieh & Loiselle, 2024). Across Canada, ‘virtual’ clinics (a telephone or video call) have frequently replaced in-person clinic appointments (Abdelmutti et al., 2024). While convenient from a transportation and cost perspective, this leaves the patient responsible to understand and accurately report any concerns without overlooking gradually developing effects (Pituskin, 2022). The recent addition of access to personal electronic health records has further expanded the range of information that patients are interpreting in the absence of an immediate health care provider (AHS, 2025). Taken together the ‘work’ of chronic advanced cancer treatment including hands-on assessments and examinations by trained oncology clinicians, intravenous administration of chemotherapy by specially trained nurses and professional monitoring of side effects have been shifted increasingly to the individual.

The Limits of Survivorship

‘Survivorship’ is a widespread term in oncology adapted from common military metaphors used to describe cancer as a war or battle (Frank, 1995). Survivorship is commonly interpreted to define a state of being for individuals cured of early stage or localized cancers, commonly treated with surgery, chemotherapy and/or radiation (Ross et al., 2022). For those living with incurable chronic cancer, the cancer ‘battle’ is different from that of curable individuals. Compared to treatment for curable cancers (a predetermined number of treatments) in metastatic cancer there is no end. Targeted therapies continue until diagnostic imaging or bloodwork demonstrates the cancer is becoming resistant (Johnston et al., 2019; Moulson et al., 2024; Rugo et al., 2019). Accordingly, incurable chronic cancer and evolving physical effects of the disease remain powerfully omnipresent for the remainder of the individual’s life (Bridarolli et al., 2020). This state of living goes well beyond the tasks and scheduling of therapy, beyond and outside of the disease, the treatment center and care team, and necessitates a re-definition of self and space. However, the experiences of people living with advanced, metastatic cancers are unexplored, not included in current survivorship conceptualizations and require purposeful exploration to understand the experience to best inform care design.

The aim of this research is to explore the day-to-day experiences of people living with advanced chronic cancers while being treated with self-administered oral targeted therapies. Specifically, we will address these objectives: (1) to build knowledge regarding the experience of living with and self-managing advanced cancer with targeted therapy; (2) to assess the use of arts-based methods with people living with advanced cancer; (3) to facilitate increased public and practitioner awareness of everyday life during treatment with targeted therapies.

Explanation and Justification of Methodology

To explore people’s experiences of self-administered targeted therapy while living with advanced cancer, we will use a thematic and visual narrative approach. Following principles of pragmatism we will foreground experience as the starting place from which to build our analysis (Pappas, 2014). As such, we will center the stories of participant’s illness experiences told both verbally and through arts-based methods to consider the metaphors used to describe the experience of living with advanced cancer with targeted medications.

Communicating through story is a natural impulse whereby we express our emotions, our relationships and identities (Priest et al., 2002). It is not merely a way of describing one’s life but the means by which experiences and the information encountered can be organized. We may create order from disorder in the telling; we may establish meaning in a potentially meaningless situation (Frank, 1995). Frank describes serious illness as a life-event that precipitates the loss of the ‘destination and map’ (p. 1) that had previously guided the individual’s life (Frank, 1995). The disruption of the previous life invalidates the context of the old stories and prompts the need for new ones. The story is a form of expression, most often verbal and organized into coherent, meaningful themes (Polkinghorne, 1988). Illness narratives are often built on metaphors - both form their embodied experience and social ones that they incorporate into their own. Metaphors reimagine the social phenomena they aim to capture (Plage, 2022) providing an approximation for those who have not experienced them. Stories, while personal, can often reflect larger structural narratives as they describe the broader worlds in which they are situated (Clandinin, 2006; Morris & Charan, 2002). Arts-based forms of storying offer an inclusive approach to expression beyond that which emerge in an organized oral form (Visse et al., 2019) and may offer insight into those ‘unsayable’ (Schick Makaroff, 2013) aspects of people’s experience that may elude common language and temporal structures.

Sampling & Recruitment

Qualitative research frequently relies on small sample sizes of ‘information rich (Patton, 2002)’ participants with the intent of studying a human experience or phenomenon in depth and detail (Tuckett, 2004). In the quest of obtaining this rich data, the sample is derived purposefully aiming to include those whose knowledge contributes to the aim of the study (Coyne, 1997). Diverse clinical and gender experiences will be specifically sought by including people with various malignancies including advanced prostate, lung, gastrointestinal, melanoma, breast and chronic leukemias. Therefore, we anticipate ∼20 individuals will participate in this study. Provision of iPads will allow those without devices to participate. Recruitment will occur in oncology outpatient clinics via practitioners informing patients of the study during their regular follow-up appointments and providing the information sheet so the patient may contact the research team if interested.

Inclusion and Exclusion

Adults (age 18 years or older) with advanced solid tumors or malignant hematologic diseases taking oral targeted agents are eligible. Those receiving intravenous agents are ineligible. At least 6 months must have passed since treatment initiation to ensure that the targeted agent is effective with disease stability confirmed with diagnostic imaging and/or bloodwork. Due to language limitations of our team, we will require participants speak English.

Ethics Approval

This study was reviewed and approved by the Health Research Ethics Board of Alberta,Cancer, File # 23-0193. Participants will be provided with an information sheet prior to their interview. Written informed consent will be secured by paper or REDCap electronic server (Harris et al., 2009).

Data Collection

We will collect data through both qualitative interviews and arts-based methods. Semi structured in-depth interviews will explore people’s experiences of living with advanced cancers and receiving targeted therapies. The interview guide explores the participant’s experiences with medications, cancer, and everyday life. While we will utilize guiding questions, we anticipate that other experiences including metaphors will naturally arise through the discussion. We expect the interview will last 60- 90 min. (Appendix).

Following the interview participants will be invited to work with an art consultant to imagine, consider and compose “what living with chronic advanced cancer looks like, feels like and what it means to you”. Art based creations may be composed with any mix of visual, verbal, musical or other works the participant feels necessary to express and bring their experiences to life. The art consultant will offer 2-4 in person or online sessions to mentor the participant in the art method of their choice. Support and online time from the art consultant will be scheduled as often as necessary to assist in composing metaphors, ensuring the results are congruent with what the participant envisioned. iPads provided by the study team or participant’s own device may be used as the medium for photography, collage and/or design. Hands-on training will be provided for the iPad as well as instructions regarding ethical considerations (ie no face photos aside from the participant). Participants will be asked to include a short-written description of their work.

Analysis

Interviews will be audio recorded and transcribed. Reflexive memo-ing of interviewer and analysts (if different) will be kept and included in the team analysis discussions. We will use Braun and Clarke’s reflective thematic analysis steps to analyze the data (Braun & Clarke, 2006; 2019). These steps include (1) close reading of the data set, (2) coding, (3) initial theme generation, (4) theme development and review, (5) theme refining, defining and naming, and (6) writing up (Braun & Clarke, 2006; 2019; Skorepa et al., 2024). HSB will perform a close reading of all transcripts and check student team member coding, then the entire team will participate in the analysis. The initial analysis will start with a close reading of each transcript and the creation of a narrative summary. These summaries will include an analysis of the interview content, key metaphors, roles and themes of stories, and reflexive memo-ing by the researchers. Participants’ final art products and their own descriptions will also be included in the summaries. Each transcript will then be coded by two team members using a QDA software program (Quirkos, 2025). In the case of a discrepancy between coders, a third research team member will meet to discuss and decide. Findings will then be organized into the overall themes and manuscript prepared.

Rigor will be ensured through memo-ing by researchers during the interviewing and analysis stages. Memo-ing offers an opportunity for both researcher reflexivity and documentation of the thought processes used within the analysis (Birks et al., 2008). Using multiple data sources of interview and descriptions will add trustworthiness to the interpretations made. We also will maintain an audit trail of all decisions made during the analysis (Thorne et al., 1997). After analysis is completed, participants will be invited to participate in “member checking” to provide feedback on their own narrative summaries and the initial themes through follow-up email or phone call.

Data Management

Data will be stored on a secure network within the University of Alberta computing firewall. All study data will be de-identified. All study data inclusive of audio recordings, transcripts, electronic artwork versions and consents will be stored on this secure network for a minimum of 5 years per requirements of the research ethics board.

Discussion

In developed countries, increasing numbers of people are benefiting from targeted therapies and living for years with advanced cancers. However, their experiences have not yet been examined and are not considered in the common conceptualization of survivorship. With LONGEVITI we aim to understand the everyday life of an entirely new category of social existence – living with advanced cancer – people living in perpetual liminality while more responsibilized to self-manage associated with advancing medical technologies. This is a new definition of chronic illness requiring new ways of understanding (psycho)social implications in optimally supporting these people in our societies. We expect the creative works to be of therapeutic benefit to the participant and additionally provide hope for people newly embarking on their chronic cancer journeys. We will also learn the utility of narrative and arts-based methods research among people living with advanced chronic cancer. We also anticipate the general public may be better informed of the nature of cancer as a chronic disease, and how people’s cancer experiences are no longer defined by debilitating treatments that decrease quality of life and reduce participation in society.

LONGEVITI will enhance our understanding of the experiences of individuals self-managing advanced cancer with targeted medications. It will also assess the acceptability of innovative research methodologies. Ultimately, the goal is to advanced knowledge about this new and complex chronic disease among patients, healthcare providers and the general public.

Supplemental Material

Supplemental Material - Design of LONGEVITI (LIVinG with chrONIc cancEr Therapies): A Narrative Arts-Based Study of Living with Advanced Cancers Treated with Targeted Therapy

Supplemental Material for Design of LONGEVITI (LIVinG with chrONIc cancEr Therapies): A Narrative Arts-Based Study of Living with Advanced Cancers Treated with Targeted Therapy by Holly Symonds-Brown, Calvin Kruger, Meredith Porter, Samantha Schembri, Karen King, Nanette Cox-Kennett, Rae-Lee Christie, Ziyu Li, Kian Ahmadinejad, Edith Pituskin in International Journal of Qualitative Methods