Collectively common: the devastating impact of rare kidney diseases in the UK

Kidney Research UK asked me to design their new report about rare kidney diseases, working with their existing report style. The report would be published in both print and accessible PDF formats.

A person holding a copy of Kidney Research UK's Collectively common: the devastating impact of rare kidney diseases report tucked under their arm.

Project notes

The new report required some refinement and expansion of the existing typographic system.

I introduced a clearer heading hierarchy that better reflected the document’s structure and ensured that key headings stood out more effectively on the page. I also developed new styles to distinguish different types of content, such as case studies and testimonials.

I built and tagged the report to allow the content in the digital version to be repurposed. This is demonstrated in the final image, which shows the Key Findings page as seen in Acrobat’s Reflow view.

I remediated the PDF version to pass programmatic and human checks for conformance with PDF/UA and WCAG and tested the user experience in the NVDA screen reader.

Images copyright Kidney Research UK (opens in a new tab) where indicated.

What it sounds like

Listen to the Key Findings infographic (read by NVDA)

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Transcript

Heading Level 2

Key findings

List with 10 items

1. Rare kidney diseases include over 150 distinct diseases that, while individually uncommon, are estimated to collectively affect around 160,000 people in the UK.

2. We estimate that rare kidney diseases cause between 5% and 10% of all cases of CKD at the most advanced stages but disproportionately account for 25% of all dialysis and transplant patients.

3. The cost to the NHS of dialysis for rare kidney diseases is approximately 263 million pounds per year.

4. Rare kidney diseases disproportionately affect children, more than 60% of children with kidney failure have a rare kidney disease.

5. Children with rare kidney diseases are likely to be on dialysis or living with a kidney transplant by the time they reach adulthood.

6. Children on dialysis will on average miss more than 100 days of school per year, while one person interviewed for this report missed an entire year of school.

7. In addition to having worse health, people with rare kidney diseases are economically disadvantaged, the majority of people with a rare kidney disease have a 64% chance of being out of work by the time they reach kidney failure.

8. Despite the significant impact of rare kidney diseases on economic productivity, this is under researched in the UK, a global systematic review identified 33 productivity studies on the impact of kidney disease on patients' ability to work, but none covered the UK.

9 There are a limited number of new targeted therapies in development for several rare kidney diseases. However, of the 13 we reviewed, about 40 percent of trials did not include a UK centre, meaning UK patients do not get the opportunity to try new therapies soon enough, and a UK economy is missing out on R and D investment.

10. The impact on children is compounded as they are almost universally excluded from trials, as a result, treatment innovations for children lagged by up to 13 years behind those for adults.