Shared decision-making

The International Kidney Cancer Coalition (IKCC) has developed a series of guides to help people make decisions about their healthcare. These decision aids have been written for people diagnosed with metastatic or recurrent renal cell carcinoma (RCC) (cancer that has spread from where it started or come back after treatment) and people with small renal masses.

There are different types of treatment for people who have metastatic or recurrent RCC or small renal masses. You will probably have many appointments with your healthcare team and receive a lot of information about your treatment options.

You will be faced with new challenges, concerns and questions, and you will need to make some personal decisions about your treatment and living with your condition.

These decision aids aim to help guide you through your conversations with your healthcare team. They are also a tool to help you make treatment choices that will deliver the best quality of life for you according to your personal goals.

Having kidney cancer can be overwhelming. However, learning about the disease and treatment options can empower you to become an advocate in your own treatment and care. You are the most important and powerful person involved in your own healthcare. Only you understand the impact of choices on your life.

Decision aid resources for people with kidney cancer

1. Kidney Cancer Basics – an introduction to kidney cancer and a kidney cancer dictionary

2. My Treatment My Choice – a decision aid for people with small renal masses

3. My Treatment My Choice – a decision aid for people with metastatic kidney cancer

4. My Treatment My Choice – a decision aid for people with locally advanced kidney cancer

The principle that patients should be involved in all the decisions about their own healthcare has been talked about for many years. We call this principle “shared decision-making”.

Shared decision-making is a process which ensures patients are supported to make decisions about their care and treatment which are right for them. It is a collaborative process and it starts with a conversation between the patient who is receiving care and the healthcare professional delivering the care. The conversation develops into a process in which they work in partnership to make the best possible decisions; bringing together the clinician’s expertise, treatment options, evidence, risks and benefits, and the patient’s individual preferences, personal circumstances, goals, values and beliefs.

One of KCSN’s core beliefs is that patients and their families have an essential role to play in healthcare decisions that affect their lives. Together with the International Kidney Cancer Coalition (IKCC), we have written a series of shared decision aids for people with kidney cancer, their caregivers and families. The booklets are written by a team of patients, patient advocates and medical professionals who between them have supported thousands of kidney cancer patients worldwide.

We hope you will find theses booklets helpful as you and your healthcare team navigate the decisions that lay ahead of you. To download or to print out a pdf copy of an IKCC shared decision making booklet, please click the the title above. The booklets are available in A5 format. If you wish to print on A4 pages, please use the layout option “2 pages per sheet” in the print options of your printer.

Please do get in touch with us if you have any comments and would like to share your experience of using the booklet. You can email us at team@kcsn.org.uk.

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