‘Turning data into action: understanding cancer patient preferences for treatment outcomes’

Co-CEO of Shine Cancer Support Ceinwen Giles and immunotherapy nurse consultant Trudy Guinan discuss the importance of patient preferences for cancer treatment.

This article was organised and fully funded by Bristol Myers Squibb (BMS), and developed in collaboration with BMS and Nursing Times. This article has no promotional intent.

Bristol Myers Squibb does not intend to encourage the use of, or advocate the promotion of, its products through the objectives of this article.

With an increased range of new cancer treatment options but unprecedented capacity constraints in the NHS, the system, patients and healthcare professionals are navigating a new normal in cancer treatment and care (Albrecht et al, 2018; British Medical Association, nd).

To understand the types of patient expectations, preferences and experiences that exist for cancer treatments, Bristol Myers Squibb undertook a survey of 881 UK cancer patients aged 18 years and over, who received anti-cancer therapy (systemic cancer treatments, not inclusive of surgery) between 22 September and 3 December 2021.

In response, the report, Turning data into action: Understanding cancer patient preferences for treatment outcomes, was developed (see downloadable PDF attached below).

The right treatment for a patient’s cancer is unique to each individual, often requiring consideration of a number of factors. These can include the distance needed to travel to hospital, pre-existing comorbidities, and how it will impact their ability to carry out day-to-day tasks (Ambroggi et al, 2015).

The importance of these factors can be influenced by a clinician’s expertise, a patient’s preferences and system considerations such as workforce capacity and costs (National Cancer Institute, 2022; Health Service Journal, 2017; Robertson, 2016; Simes, 1985).

To gather both the patient and clinician perspective, an interview was conducted with co-CEO of Shine Cancer Support, Ceinwen Giles, and immunotherapy nurse consultant Trudy Guinan.

This opinion piece shines a light on the importance of patient preferences for treatment and advocating for them to have parity alongside the recommendations of healthcare professionals.

In addition, it explores the system-level barriers which may be limiting patients’ preferences being taken into consideration and offers associated solutions.

Acknowledging the importance of patient preferences

Ceinwen Giles: “Patient preferences are perceived in the context of wider treatment decisions, so it is hugely important. When patients first enter the system, it can be difficult for them to make decisions since it is all unfamiliar.

“When I was diagnosed with cancer, no one in my family had cancer before. I thought chemotherapy was one thing, I didn’t realise that there are lots of different types. It can be difficult for patients to learn about the context that they are being treated in.

Ceinwen Giles

“This makes shared decision making between the healthcare professional and patients more important because there is a need to have open conversations about what treatment could look like and how it can happen.

“The report highlights what people are willing to compromise on. Sometimes patients are really frustrated because the treatment options potentially are better at another location, but options were dismissed by assumptions from the clinician. The decision is sometimes taken out of the patient’s hands.

“Unless there is sufficient time given to those conversations, the patient might not understand the various factors to consider. In terms of benefits to the patients, they are more likely to receive an outcome that suits them better if their preferences are taken into account when making treatment decisions.

“With the right information, the patient could weigh up the costs and benefits of certain treatments. How fit and healthy do I think I am? What do I think I’m willing to tolerate? Am I willing to spend time in the hospital to do this more intense treatment? Will I need to reduce my working hours?

“Ensuring the patient has an active role in their treatment decisions is crucial for treatment adherence. Along the patient journey, greater participation will support attendance to appointments, taking medications at the recommended frequency, as well as reporting symptoms and side-effects.”

Trudy Guinan: “From a clinician point of view, a patient receives a diagnosis followed by a rapid process to get them on treatment as fast as possible. It’s often the main focus of the consultation without enough time, leading to assumptions being made.

“We assume that the patient just wants to get onto treatment. We focus a lot on receiving treatment closer to home and in the community, but there are patients who would rather travel to a centre with wraparound services and assessment units with different treatment options available.

“It’s important to ensure patients don’t feel overwhelmed by not fully understanding the different treatment options.

“Joint decision-making between the patient, carers and the treating clinician can enable empowerment of choice with guidance. Consideration must be given to the individual’s ability and preference for involvement.”

Ceinwen Giles: “Patients have complex medical histories as well as different levels of education or even interest in their treatment. This means their confidence in research and making treatment decisions will vary.

“Many patients live with comorbidities, so we must keep in mind that care should be individualised. Greater patient involvement has a positive psychological effect and leads to an improved overall quality of life by enabling patients to maintain control throughout their journey.”

Factors used to inform treatment decisions

Trudy Guinan: “In terms of factors considered by clinicians when making decisions, as part of many, frailty and performance status is important. The effect on the patient’s quality of life must be carefully assessed along with the expected outcome.

“Awareness must always be given to the patient’s expectations. It’s difficult to have those initial conversations since there is such a focus on getting the patient diagnosed quickly. I’m very keen that even after treatment has started, a consultation should be held with the patient.

“Workshops should be universally implemented to go over information with patients and ensure that they are happy and understand the potential side-effects if they have a break in their treatment course.

“Following the initial consultation, having begun treatment, we must go back and revisit. During the whole of their journey, patients must feel listened to.”

Ceinwen Giles: “I agree, initially when you’re first diagnosed, the sole focus is on outcome. Patients can feel easily overwhelmed, and understanding the terminology and language can be challenging.

“Regarding comorbidities, especially if a patient is managing a long-term condition, they will have strong knowledge of its impact on an individual level. We must ensure that conversations are held about how it is managed alongside cancer treatment.

“For example, we support someone at Shine with bipolar disorder who was taken off a lot of her medication when she started cancer treatment. This greatly impacted on her mental health and occurred because the cancer team wasn’t listening to her concerns or speaking to her mental health team.

“Holding these conversations about comorbidities and side-effects, taking into account the subsequent impacts, enables the clinician to understand the lived experience and help create a better outcome.

“Following Trudy’s point, post-commencement workshops would help support patients during the longer-term side-effects.

“This is particularly relevant for long-term fatigue from many cancer treatments. Discussions can be held throughout the experience, revisiting how patients are feeling at check-in points.”

Trudy Guinan: “It’s important that we take into consideration their prior experience. Potentially this has a significant psychological impact.

Trudy Guinan

“They may have had a great experience first time or a traumatic one. We must think holistically, ideally within a multi-disciplinary team for joint working.

“All of that is about time and resources invested into the patient to make them fully informed, to help them make those decisions. With a stretched NHS, working alongside patient organisations can support collaborative working and provide information to patients.

“Patients can be more prepared ahead of the initial consultation. With limited resources, time must be given at the start to ensure better flow throughout their patient journey.”

Ceinwen Giles: “We forget how scared people are. Patients are really frightened. They’re frightened of the cancer; they’re frightened of the treatment. Knowledge can help patients feel empowered.

“As part of a patient organisation, we support people to advocate for themselves and ask the right questions. This is increasingly important as patients need help during their research to avoid misinformation.”

Giving patients equal standing and confidence to contribute to decisions about their care

Ceinwen Giles: “There has been a substantial shift over the last decade in the movement towards shared decision making. My concern is how deeply it is embedded. For instance, with the onset of Covid-19, patient involvement was quickly reduced.

“I think that when people are under pressure then time held with patients can be cut, despite the healthcare system being set up for patients. More work is needed within community services to ensure the process for patient engagement is robust.”

Trudy Guinan: “I do think there is a greater need for clinical nurse specialists (CNS), at minimum of one for each tumour group ideally. They have certainly helped in the early stage of the process, providing additional support to the patient.

“My personal feeling is we should be contacting patients within a few days of the initial consultation. The CNS role is vital to ask the patients their thoughts and feelings of the experience. The CNS is crucial for leading the patient contact.

“Working alongside other organisations in a collaborative way can help patients to feel equipped. Care coordinators could be given more of an active role in preparing patients for their consultation.

“It is about investment of time at the start.  We need to recognise that there is an economic argument for ensuring that patients are fully involved in their care. It is important that we revisit the patient’s choice and preferences at intervals throughout their journey.”

References

Albrecht B et al (2018) Pursuing breakthroughs in cancer-drug development. McKinsey (accessed April 2023).

Ambroggi M et al (2015) Distance as a Barrier to Cancer Diagnosis and Treatment: Review of the Literature. Oncologist; 20: 12, 1378-1385.

British Medical Association (nd) An NHS under pressure (accessed April 2023).

Health Service Journal (2017) Exclusive: Cancer workforce shortages having ‘direct’ impact on patient care (accessed April 2023).

National Cancer Institute (2022) Communication in Cancer Care (PDQ®) – Health Professional Version (accessed April 2023).

Robertson R (2016) Six ways in which NHS financial pressures can affect patient care. The King’s Fund (accessed April 2023).

Simes RJ (1985) Treatment selection for cancer patients: application of statistical decision theory to the treatment of advanced ovarian cancer. Journal of Chronic Diseases; 38: 2, 171-86.

Date of preparation: May 2023

Job number: ONC-GB-2300148