Preparing Patients and Managing Expectations - A Multidisciplinary Conversation

Conversation led by Dr Mario Lacouture with Dr Giselle Barros, Dr Asma Dilawari, Dr Manpreet Kohli and Iain Sallis. March 2022.

While the science behind scalp cooling and the treatment itself are relatively simple, a patient’s experience can vary. The more that the patient is educated and prepared for the process ahead of them, the more they can trust the outcome and positively approach the experience.

Managing patient expectations takes time and can be complex, but the more information that is provided at every touch point with the clinical teams, the more likely the patient is to have a positive outcome. So, what can clinicians from different oncology disciplines do to ensure patients are prepared and realistic about scalp cooling outcomes?

"Of course, the top priority will always be treating a cancer, but can we do that while also maintaining others things that are important to the patient. The two are not mutually exclusive"

Dr Manpreet Kohli, MD, FACS
  • An educated and supported patient has a better outcome – it may not influence hair retention rates, but has a large impact on patient satisfaction
  • Multidisciplinary commitment to scalp cooling creates a network of touch points to support and counsel the patient
  • Being honest but enthusiastic about scalp cooling and the long term positive effects it has can encourage patients, and ensure that they can move on from their treatment to a new normal as quickly as possible

‘The notion of “the Mechanism of Anticipatory Coping” – if you know what is going to happen, it is going to be easier for you to deal with it, the earlier and the more that we repeat to patients…the more that patient is going to be prepared’ – Dr Mario Lacouture

We know that as many as 8% of patients reject chemotherapy due to the fear of hair loss.1 The more that cancer care teams support scalp cooling, and the more multidisciplinary buy-in that exists, the more likely it is that patients will choose the treatment and see successful outcomes.

The group suggested survivorship and recovery from chemotherapy could be dealt with more effectively – discussions about chemotherapy-induced alopecia are often fleeting rather than providing specific detail, and while scalp cooling is being brought into the conversation more, there are still gaps in information which aren’t being covered – such as increased regrowth with the treatment.

‘(As a trichologist) medical professionals who are talking about hair is a dream come true to me’ – Iain Sallis

The more information that can be shared with a patient about scalp cooling – potential outcomes, the process itself, materials on hair care, and cap fitting – reduces the unknown, and in turn, a patient’s anxiety. For example, if a patient isn’t advised that shedding is a normal part of the scalp cooling process, they are likely to think that it isn’t working and discontinue. Similarly if the potential of faster regrowth, even with significant hair loss, is not mentioned, patients may choose to discontinue usage. 

It is also important to note that staff reluctance can also have a huge impact on a patient’s willingness to scalp cool, as can their enthusiasm. Being fatalistic about outcomes rather than having a ‘let’s give it a try’ attitude can be a fait accompli. Dismissing data rather than using information to help support informed decision making is arguably an injustice to patients.

‘My role as the breast surgeon, even though I am not the one doing the scalp cooling, is introducing them to the information and then encouraging them along the way to stick with it, with the ultimate long-term goal of meeting their vision of how life could be and getting back to normal that much sooner’ – Dr Manpreet Kohli 

It is important for all disciplines to use the opportunities they have to help support patient choice when it comes to scalp cooling. Surgeons for example, particularly with patients who are having neoadjuvant chemotherapy, can introduce and support the continuation of scalp cooling, discussing the cytoprotective mechanism of scalp cooling for the hair follicle. Dermatologists can also provide valuable guidance and support – such as sharing images of potential outcomes as experienced by previous patient. This can be a powerful tool to moderate expectations and to show the long-term benefits of scalp cooling with rates of post-treatment regrowth. 

Fully integrated multidisciplinary approaches allow everyone to focus on what they know best, provide a spectrum of support, and ultimately provide the patient with truly patient-centered care.

The era of living with the scars of what happens to patients as a result of chemotherapy side effects is over. Patients shouldn’t feel guilty about not wanting to have to live with constant reminders of their diagnosis, and to be able to look in the mirror and recognize themselves. A gold standard of care should always include survivorship programs, to assist oncologists with providing patients the key information on side effect management and long-term recovery.

McGarvey EL, et al. Psychological sequelae and alopecia among women with cancer. Cancer Pract. 2001 Nov-Dec;9(6):283-9.

Peterson LL, et al. Integration of Physician and Nursing Professional Efforts to Deliver Supportive Scalp Cooling Care to Oncology Patients at Risk for Alopecia. Oncol Ther. 2020 Dec;8(2):325-332.

Silva GB, Ciccolini K, Donati A, Hurk C. Scalp cooling to prevent chemotherapy-induced alopecia. An Bras Dermatol. 2020.

Martín M, et al. Persistent major alopecia following adjuvant docetaxel for breast cancer: incidence, characteristics, and prevention with scalp cooling. Breast Cancer Res Treat. 2018 Oct;171(3):627-634.