Understanding the needs of kidney cancer patients, globally

Developing a survey to provide actionable insights across different countries

The International Kidney Cancer Coalition (IKCC) is an independent international network of patient organisations that focus on kidney cancer. Its mission is to empower and represent the kidney cancer community through advocacy, awareness, information, and research with a vision to reduce the global burden of kidney cancer.

The organisation was created from a strong desire among national kidney cancer patient groups to network, cooperate and share materials, knowledge and experiences from around the world.

Every year, an estimated 431,000 people worldwide are diagnosed with kidney cancer, and this number is on the rise globally. Therapies have improved, but little is known about the variances in patient experience from country to country, including unmet needs and best practices in patient education, quality of life and involvement in clinical trials and registries.

The IKCC launched a successful survey of their members in 2018, with the intention to run it every two years. This survey cycle allows them to identify best practices whilst monitoring trends and exploring topics of particular interest to affiliate organisations.
Picker was appointed in 2020 to administer the program, including updating the patient questionnaire, to further explore and benchmark worldwide patient experience.

Challenges

The IKCC represents smaller organisations spread across the world, which specialise in different types of cancers and where treatment protocols differ between countries. Working with a diverse community created several challenges, the survey needed to:

• balance the needs of multiple stakeholders, each with different aims that could conflict;
• be accessible in 13 languages;
• provide actionable insights, enabling local organisations to improve patients’ lives; and
• the question wording needed to work globally, whilst being relevant and understandable in each country.

The IKCC also wanted to collect global data to improve collective understanding of patient experiences worldwide and look for best practices to share.

Actions

Before launch, the readability and serviceability of the questionnaire were tested by IKCC local affiliates in each country. This involved testing the questions with the patient population to check that language and queries were recognisable and relevant.

We updated the patient questionnaire to further explore patient experience, this included understanding:

• Patient knowledge – expectations of treatment and shared decision making.
• Clinical trials – research awareness and sources of information.
• Quality of life and overall health status of respondents.

The 2020 survey also included special areas of inquiry such as:

• Biopsy practice – experience and willingness to repeat in the future.
• Physical activity – to what extent do patients undertake physical activity as part of their overall survivorship.
• Patient Health Engagement Scale – to what extent do patients make sense of their health status and their perceived role in the healthcare journey?

The 2020 IKCC global patient survey explored experience at three key touchpoints: diagnosis, treatment planning; and overall care and treatment. It was published in 13 languages and promoted through IKCC affiliates and partners, as well as via the IKCC social media and web pages. To improve accessibility, paper versions of the survey were also distributed by local affiliates.

Impact

The results will be shared with the global kidney cancer medical communities for planning and sharing of best practice. Patient organisations and medical professionals will be able to use the insights as a conversation point between global kidney communities. Furthermore, individual countries can use their reports to advance their understanding of patient experiences and to drive improvements in care provision locally. They can also access more detailed analysis using the dashboards which include disease stage, for example, enabling comparison between localised and advanced disease.

The insights will provide a better understanding of patients’ state of mind and the need for psychological support, regardless of the stage of the disease.

Going Forward

There will be a post-project review to understand any issues that arose for any of the IKCC member organisations. Each of the survey questions will be reviewed to understand if patients correctly interpreted them, and any showing high drop-out rates or missing data will be amended or removed. The next iteration of the survey will be sent out to patients in 2022.

“Picker showed us the importance of getting the questions right initially, to be able to generate the data needed for analysis.”

Julia Black, Operations Manager, International Kidney Cancer Coalition.