Delia Sworm, skin cancer clinical nurse specialist at Royal Surrey County Hospital NHS Foundation Trust, offers her perspective on the importance of shared decision-making between clinicians and people with melanoma
I have worked as a skin cancer nurse for five years, supporting people from diagnosis to recovery. Through our regular interactions with people with melanoma and their carers, clinical nurse specialists (CNSs) are in a unique position to hear their concerns, answer their questions and personalise their care. We work with the multidisciplinary clinical team (MDT) to ensure they receive the treatment options best suited to their needs.
Looking back on Melanoma Awareness Month in May, it is worth noting that melanoma is now the UK’s fifth most common cancer,1 and it has the third fastest increasing incidence rates of the common cancers.2 With a number of preventable and unpreventable causes, new treatment options and the individuality of every person with melanoma, complex information needs to be tailored and communicated effectively. Decision-making needs to be shared so treatment can be better tailored to the individual and trustworthy patient-health professional relationship can be fostered.
According to the Melanoma Patients Matter report, nine in 10 people with melanoma feel they have been involved in discussions about their treatment and care, to somewhat varying extents, though have often wanted to be involved more than they have been. However, a third of people with melanoma do not feel they have been able to have conversations about their priorities and expectations for treatment with their health professionals.
To address this unmet need, tools and standards are needed that collaborative healthcare teams should all make use of and benefit from. The Melanoma Patients Matter report and Talking About Melanoma Matters tool have been developed to ensure that people with melanoma are put at the centre of their treatment decisions. The report and tool offer guidance that can be replicated across the country. They are evidence that collaboration between people with melanoma and their clinicians really works. Shared decision-making is possible.
What is shared decision-making and why is it important?
To put it simply, shared decision-making is when health professionals and patients work together.3 When people are put at the centre of their care decisions, their knowledge is improved, and anxiety reduced.4 It also helps us to assess risk and spot issues before they escalate.
At the Royal Surrey County Hospital, clinical nurse specialists attend meetings with patients alongside the oncologist and the surgeon. When surgical interventions are discussed, we sit in on the meeting and provide more information. During these meetings, our patients’ priorities and expectations for treatment are discussed in manageable detail, based upon the level of information they require. They are then given our contact numbers and encouraged to follow up if they have any concerns or questions. Crucially, they are given time to digest the information they are provided, allowing them to make informed decisions. It is about providing time and being available for patients when the time is right.
An empowered, confident patient can communicate more effectively with the MDT, which I believe leads to better outcomes.4 Of the 104 people with melanoma surveyed as part of the Melanoma Patients Matter report, only half felt they completely understood their diagnosis and the nature of their illness after it has been explained by their clinician or CNS. A diagnosis of melanoma can be emotionally overwhelming. Good communication is paramount to ensuring the best outcomes for our patients. A two-way dialogue is key: clinicians should understand their patients’ expectations, while patients have a role to play by sharing information and asking the most effective questions.
The pivotal role of CNSs as patient advocates
I see roughly 70 people with melanoma every week. They have the CNS’s direct number and email address and can contact them during working hours. Their needs and preoccupations are individual. They may be worried about the impact on their family, whether their condition will prevent them from working or being a financial burden, while some may want to know how treatments will affect their day-to-day or long-term quality of life.
It is my job to respond to the patient in front of me, meaning I must have a unique relationship with all of them. It is essential for truly understanding and developing care plans. This knowledge and responsibility means that CNSs have a pivotal role to play in the MDT. We are the patient advocate, ensuring that even when they are not present, their voices are heard.
CNSs can empower patients to make the best decisions for them. Everyone with melanoma should have access to one. We need to understand and communicate many complicated and challenging aspects of a patient’s experience, from their diagnosis, to their treatment options, to post-treatment next steps. It is important that there is someone who can relate to them and answer questions clearly, leaving no room for ambiguity.
Melanoma Patients Matter report
The report makes recommendations based on a survey of stage 3 and 4 melanoma patients across the UK. One of the recommendations is for people with melanoma to be introduced to the CNS – their advocate – at diagnosis. Despite the increasing prevalence of melanoma, the CNS workforce across the country is the fourth lowest of all the cancer specialities. The Melanoma Patients Matter report highlights the need to increase the number of melanoma CNSs and address geographical disparities that result in sub-optimal patient outcomes.
Although resources may be scarce and time limited, it is still vital that health professionals be able to have open and honest conversations with their patients so that informed, shared decisions can be made.
Talking About Melanoma Matters tool
To help foster these productive and meaningful conversations, the Talking About Melanoma Matters tool has been developed, as informed by the report. The structured framework provides guidance to help achieve best practice in melanoma consultations, from the first GP appointment to life beyond melanoma.
Armed with the Talking About Melanoma Matters tool, we can pre-empt our patients’ questions, engage with them meaningfully, and improve their experience of melanoma care. Patients are given some example questions for their clinicians and actions they should consider to ensure they are guided along the treatment pathway that is right for them. Alongside this information, we are given guidance on what people with melanoma want their clinicians to do at every stage. The tool will allow an increasingly busy clinical workforce to increase the value of time spent with patients.
1Cancer Research UK: Melanoma skin cancer incidence. www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/melanoma-skin-cancer#heading-Zero
2Cancer Research UK: Incidence trends over time for common cancers. www.cancerresearchuk.org/health-professional/cancer-statistics/incidence/common-cancers-compared#heading-Three
3National Institute for Health and Care Excellence: Shared decision making. www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/shared-decision-making
4NHS England: Shared decision making to improve health outcomes. www.england.nhs.uk/shared-decision-making/why-is-shared-decision-making-important/shared-decision-making-to-improve-health-outcomes
As part of Melanoma Awareness Month, Bristol-Myers Squibb initiated and funded the Melanoma Patients Matter report and Talking About Melanoma Matters shared decision-making tool. The British Association of Skin Cancer Specialist Nurses (BASCSN), Melanoma Action and Support Scotland (MASScot), Melanoma Focus and Melanoma UK provided their experience and expertise in shaping the project.
The Melanoma Patients Matter report makes recommendations based on a survey of stage 3 and 4 melanoma patients across the UK. The recommendations are bucketed into:
1. Information, support and shared decision-making
2. Treatment options
3. Clinical nurse specialists
4. Care plans
The Talking About Melanoma Matters tool sets out some guiding principles for communication between clinicians and people with melanoma, which have been largely informed by the experiences of over 100 people with melanoma who responded to the survey conducted for the Melanoma Patients Matter project.
Visit http://bascsn.com/wp-content/uploads/2019/05/Melanoma-Patients-Matter-web.pdf to download the report.
Visit http://bascsn.com/wp-content/uploads/2019/05/BMS-Talking-About-Melanoma-Matters-Discussion-Guide.pdf to download the tool.
Declaration of interest: This article was initiated and funded by BMS UK Ltd. The author, Delia Sworm was selected on the basis of her expertise in the field. BMS provided editorial input on the accuracy of the content
ONCUK1900597- 02/May 2019