Women and Kidney Disease: A Twitter Conversation for One and All.

Social media are gaining prominence as a platform for nephrologists to highlight new research findings, share clinically relevant cases, and encourage communication with colleagues. Kidney International Reports (KI Reports) recently created a Twitter account (@KIReports) to further expand our social presence, engage current readers, and expand readership by posting recent articles and important findings.

In support of 2018 World Kidney Day (WKD), KI Reports published several review articles related to the chosen theme for this year, “Kidneys & Women’s Health”: Acute Kidney Injury in Pregnancy: The Changing Landscape for the 21st Century, by Rao et al., and Glomerular Disease in Women, by Wiles et al.2, 3 The KI Reports editorial team also participated in the WKD Twitter chat, moderated by the WKD team (via Twitter handle @worldkidneyday), which is a joint venture of the International Society of Nephrology (ISN) and The International Federation of Kidney Foundations (IFKF) (Figure 1).

Figure 1

2018 World Kidney Day Twitter Chat logo.

On March 7, 2018, a total of 145 individuals from around the globe logged onto their Twitter accounts and joined the conversation by using hashtag #WKDchat in their posts, or “tweets.” The real-time, 1-hour online discussion provided an even playing field for a diverse group of advocates to express the need for improved awareness, support, treatment, and outcomes in women with kidney disease and related conditions. Participants included physicians, patients, editors, medical societies, policy directors, and nutritional scientists, both men and women, from more than 30 countries, predominantly in the Americas, Europe, and Asia.

The discussion included the topics of pregnancy and fertility, raising awareness, unique challenges for women, preventive behaviors, and challenges/worries. The participants’ tweets were seen by nearly 200,000 users, reaching a grand total of 1.4 million Twitter feeds. Some hashtags used during the chat aimed to bring attention to related conditions and comorbidities, and included #lupus, #CKD (chronic kidney disease), #pregnancy, and #FSGS (focal segmental glomerulosclerosis).

Clinicians voiced challenges to treating women with kidney disease, including:

Preeclampsia and pregnancy-related complications

Diagnosis and treatment of CKD impacts on contraception, pregnancy, and the fetus, including premature birth/low birth weight in newborns

Urinary tract infections due to poor access to clean conditions in rural India

Little attention paid to women’s health in some developing regions

Patients with kidney disease expressed the challenges they face, including:

Stigma associated with kidney disease that can cause poor self-image (Figure 2)

Figure 2

Patient Holly Loughton tweets about the impact of kidney disease diagnosis on self-image. FSGS, focal segmental glomerulosclerosis.

Fear of rejection after kidney transplantation

Fear of health risks during pregnancy

Infertility

KI Reports tweeted several relevant articles from the current issue to bring attention to recent publications focused on preeclampsia, diagnosis of CKD in women, acute kidney injury in pregnancy, and glomerular disease in women.

Clinicians suggested the following resources to improve prognosis, diagnosis, and treatment:

Early screening and diagnosis of CKD

Early conversations with physician and partner (Figure 3)

Figure 3

Liz Lightstone, MD, advocating for support of women with kidney disease who have pregnancy-related complications.

Improved health care systems and finances

More recent clinical studies

Disease registry

Peer-to-peer support

Patient-to-patient support

Participants agreed that the medical community should continue to raise awareness of these very important problems specific to women with kidney disease. In the next Twitter discussion and those in years to come, the ISN looks not only to increase participation by patients and clinicians, but to attract involvement of health care administrators and policy makers as well—the goal being to improve kidney disease prevention and treatment in women by bringing further awareness to the institutions that govern health care access.

As for KI Reports, we will continue to look for meaningful ways on social media to engage with the nephrology community, both nephrologists and patients.