‘Person vs. Patient’ – the undervalued role of self-identity in cancer survivorship

Some years ago in 2013, I was the Chief Investigator in a qualitative study exploring the lived experience of people with kidney cancer. One of the key findings from the study was how patients sought to find a balance between their identity as a person vs. their persona as a patient.?

In seeking this balance, they highlighted external 'work to be done' (such as being well prepared by hospital staff and/or by themselves for the side effects of medicines) and 'internal work' (such as finding something positive in every day or not letting negative thoughts in).

Whilst no two patients were the same, almost all were conscious that treatment optimization, and especially optimization of drug dosage, was key to achieving their tumour control but also impacting side effects they experience. Where balance of the control of disease was effective against presence of side effects, patients were best able to define themselves as a ‘person’, rather than a ‘patient’ for more of the time, and this definition of self as ‘person’ was a key to remaining positive.?

Since then, I have worked on further research studies involving people living with cancer, as well as other conditions including chronic asthma and severe migraine.

In each study, we used the same methodology – an adaptation of interpretative phenomenological analysis (IPA), seeking to empower participants to define their own individual narratives - of treatment, quality of life, relationships, mental well-being, survival.

As I reflect across these studies, that equilibrium of 'person vs. patient' often surfaces. Typically, patients and their caregivers describe the balance of the two as a moving target – that success or failure is not fixed through the trajectory of their disease or their lives. This realisation of fluidity can bring both hope and despair for patients. For instance, a patient’s realisation that today’s triumph of feeling in control or joyful of living may be all too fleeting, or conversely the relief that the shock of a scan result or abnormal blood count did not force them back into ‘patient-mode’ for as long as they had feared.

"It makes me feel like two people. One who’s fine, normal, human – the old me; the other one who’s really sick and has a terminal disease and there’s no going back .."

Throughout their experiences, patients also had to tackle decision-making – from the everyday weighing up of the feasibility of a trip out whilst recovering from a severe migraine, to the momentous choice of whether to undergo a stem cell transplant in the course of leukaemia treatment. These decisions are blended with clinical, social, individual meaning – how coping with the toxicity of a treatment can change not just your physiological body, but your sense of identity, or mental resilience or ability to be ‘the person I want to be’ with friends, family, colleagues, even strangers.

Given the theme of 'person vs. patient' I have seen in my studies, I sought out the many established patient reported outcome (PRO) methodologies for quality-of-life data, to see whether 'person vs. patient' was represented as a factor of importance to patient treatment experience, particularly within cancer treatment. I found fourteen commonly cited PROMs for cancer quality of life, including the popular EORTC QLQ-C30. The most common factors related to pain, mobility, activity and mood, whilst a few questionnaires included factors related to body image and mental health/well-being. However, none of the PROMs directly referenced sense of self or self-identity.

Is ‘Person vs. Patient’ the same concept of cancer identity as ‘Patient vs. Survivor’?

As survival?rates in cancer have improved, more and more people are now living with cancer as a chronic illness, considering themselves in remission, even ‘cured’.??The term “cancer survivor” has become widely used and is seen as a more positive term than “cancer patient”. Indeed, research (whilst limited), suggests that a self-identity as “cancer patient” rather than a “cancer survivor” is associated with greater depression and lower health-related quality of life. Having a “cancer patient” identity was associated with higher health care use within the past 12 months.

Furthermore, a study of long-term colorectal cancer survivors reported that younger survivors were less likely to endorse the “survivor identity” when compared with older survivors. This could be due to the normalization process whereby older individuals perceive cancer as a chronic illness that could be expected as part of the life course or to older individuals having experience living with other pre-cancer chronic conditions (“normal hardship theory”), thus lessening the impact of cancer in their lives.

Whilst related, this concept of 'Patient vs. Survivor' is not simply another name for?'Person vs. Patient'. The key difference is that?‘patient’ and ‘survivor’ terms both frame the individual in the context of their cancer?– as a ‘cancer patient’ having an ongoing experience of the disease, or a ‘cancer survivor’ as someone who has fought the disease and lived to tell the tale.

In contrast, 'Person vs. Patient' speaks to a battle to maintain personal identity – not framed by disease but by personality itself – the ability to self-love and respect, for candour, trust and communication, to be ‘me’. The central point is, even if part of a?person’s?identity has become adjusted by disease, it does not?define?them per se.

How can healthcare providers recognise?Person vs. Patient?

In the last ten years, much greater recognition has been made of the patient experience of oncology, and the tension between quality-of-life (QoL) vs. longevity of life (LoL), especially amongst healthcare regulators, payers and providers. Yet, despite this, very little space is made in patient records to log the constant work that is taken on to try and achieve optimum balance between extending life and a life worth living as defined by individual patients themselves. If anything, such records are most commonly still clinical notes, charting attempts to minimise adverse events whilst administering drug doses that were effective. Such notes might be made by a range of different members across a patient’s multi-disciplinary team (MDT). Many of these notes are unstructured text, with only the numeric data (e.g. dose milligrams or bone density scores) making it into defined database fields that will later be exported and analysed for patterns and future insight.

Today, artificial intelligence (AI) algorithms and natural language processing (NLP) can analyse such free text clinician notes to identify patterns in symptoms, decision making options, concerns, rationales and beyond. If patient reported outcomes were captured directly as real-world-evidence (RWE) into the same database (as they often are already in clinical trials), then the richness of understanding the 'patient vs. person' balance of decision making and life choices could be far more nuanced, inclusive, accessible, equitable and effective. And the development of self-identity within a formal PROMS tool could bring valuable data to psychological and clinical outcomes.

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References:

Harris R, Oake K, Hawkins RE, Jones RJ, Powles T, Montgomery DA. Patient needs in advanced Renal Cell Carcinoma: What are patients’ priorities and how well are we meeting them??Patient Experience Journal. 2015; 2(2):142-152. doi: 10.35680/2372-0247.1053.

Anne Shrestha, Charlene Martin, Maria Burton, Stephen Walters, Karen Collins, Lynda Wyld Quality of life versus length of life considerations in cancer patients: A systematic literature review?Psychooncology.?2019 Jul;?28(7): 1367–1380.??Published online 2019 May 15.?doi:?10.1002/pon.5054

Melissa S Y Thong, Eva-Maria Wolschon, Lena Koch-Gallenkamp, Annika Waldmann, Mechthild Waldeyer-Sauerland, Ron Pritzkuleit, Heike Bertram, Hiltraud Kajüter, Andrea Eberle, Bernd Holleczek, Sylke R Zeissig, Hermann Brenner, Volker Arndt, “Still a Cancer Patient”—Associations of Cancer Identity With Patient-Reported Outcomes and Health Care Use Among Cancer Survivors,?JNCI Cancer Spectrum, Volume 2, Issue 2, April 2018, pky031,?https://doi.org/10.1093/jncics/pky031

Terpos et al. Management of patients with multiple myeloma beyond the clinical-trial setting: understanding the balance between efficacy, safety and tolerability, and quality of life. Blood Cancer Journal (2021)11:40?https://doi.org/10.1038/s41408-021-00432-4

Deimling GT, Bowman KF, Wagner LJ. Cancer survivorship and identity among long-term survivors.?Cancer Invest. 2007 Dec;25(8):758-65. doi: 10.1080/07357900600896323. Epub 2007 Oct 18. PMID: 17952742.

"Emotional Identity". The School of Life. https://www.theschooloflife.com/article/emotional-identity/

About the Author:

Rick Harris is Founder of?Customer Faithful, and a ‘veteran’ of market research with over 25 years’ experience across many sectors and geographies. His passion for experiential research has been applied widely in healthcare, travel and leisure and retail.

He is perhaps best known for his cutting edge methodologies in patient journey research with pharmaceutical companies, including the award-winning?Lifelines??and?Lifelines Social Landscapes? methodologies.?

Rick is Customer Faithful’s?Innovator-In-Chief! His current focus in AI is developing new methods for the large-scale emotion analytics of patient narratives, across chronic, life-changing and life-threatening diseases.