As a long-standing supporter of World Kidney Cancer Day, led by the International Kidney Cancer Coalition (IKCC), we believe disease awareness days are a crucial point in time to raise awareness of key topics for patient communities. While it’s important that industry supports these milestones, it’s critical that industry partners collaborate with patient organizations, championing topics throughout the year to bring about meaningful change for patients.

World Kidney Cancer Day is taking place on 15 June and this year, the theme is ‘We need to talk about living with kidney cancer’, focusing on providing practical help for patients and caregivers around the world. Given the rapidly evolving treatment landscape - targeted therapies and multiple novel combinations – survival rates are improving. These advances reinforce the importance of the work the IKCC, providing practical advice to support patients as they navigate their health management decisions. 

Everyone has different preferences and priorities when it comes to how they want to live while managing their disease. Each year, the IKCC’s patient survey highlights the disparities patients are experiencing in their care journey. This includes the level of involvement patients have in their health management decisions, with many stating that their own wishes or values are not always fully accounted for when care decisions are made.

From personally speaking with both patients and healthcare professionals, it is clear how important open and productive conversations are to selecting a treatment plan that reflects the values, beliefs and perspectives of the person living with kidney cancer.

Shared decision making still includes healthcare providers as experts to help inform, educate and make sense of the complex management of the disease. However, people living with kidney cancer are experts on their own bodies and disease experiences – and shared decision making allows for this.

Patient priorities may depend on a variety of personal and individual factors, such as their professional and family lives, and their own quality of life before diagnosis. Unless the patient is given the encouragement and platform to express their preferences, there is a chance that these are not being accounted for in their care plans which can have a negative impact on their health outcomes.

The evidence shows a number of benefits of shared decision making: less decisional regret,[1] higher rates of treatment compliance,[2] higher levels of satisfaction with treatment,[3] people are more involved and better informed and patients’ goals are achieved. You also see a decrease in the number of surgical interventions,[4] practice variation is going down[5] and there is a reduction in overall cost.[6] 

Most importantly, though, choosing their own options lets people living with kidney cancer decide how they wish to live their life during treatment.

At Ipsen, we launched our Together for Kidney Cancer campaign on World Kidney Cancer Day 2022, which aims to advocate for better implementation of shared decision making. This year, we will continue to not only raise awareness of the importance of shared decision making in kidney cancer, but also to help make this a reality for as many people as possible.

[1] Chichua, Mariam et al. Shared decision‑making and the lessons learned about decision regret in cancer patients. Supportive Care in Cancer, 30. 2022. 4587–4590. doi:10.1007/s00520-021-06725-5

[2] Fiorillo, A. et al. The role of shared decision‑making in improving adherence to pharmacological treatments in patients with schizophrenia: a clinical review. Annals of General Psychiatry, (19)43. 2020. doi:10.1186/s12991-020-00293-4

[3] Paduca, A. et al. Shared decision making and patients satisfaction with strabismus care—a pilot study. BMC Medical Informatics and Decision Making, (21)109. 2021. doi:10.1186/s12911-021-01469-y

[4] Niburski, K. et al. Shared decision making in surgery: A scoping review of the literature. Health Expectations, (23). 2020. 1241–1249. doi:10.1111/hex.13105

[5] NHS England. Why is shared decision making important? 2022. Date accessed April 2023. Available at: https://www.england.nhs.uk/personalisedcare/shared-decision-making/why-is-shared-decision-making-important/

[6] Coulter, A. & Collins, A. Making Shared Decision-Making a Reality: No decision about me, without me. The Kings Fund, 2011. Date accessed April 2023. Available at: https://www.kingsfund.org.uk/sites/default/files/Making-shared-decision-making-a-reality-paper-Angela-Coulter-Alf-Collins-July-2011_0.pdf