How Did COVID-19 Affect ADPKD Care?

The COVID-19 pandemic has had a profound impact on healthcare systems worldwide, disrupting routine care and exacerbating existing health disparities. Autosomal dominant polycystic kidney disease (ADPKD) is a genetic disorder that can lead to kidney enlargement, pain, and eventually kidney failure.¹ Individuals with chronic conditions, such as ADPKD, may be particularly vulnerable to the effects of the pandemic.²

However, “[t]he degree to which care was disrupted for ADPKD patients because of the COVID-19 pandemic has not been studied,” wrote the authors of a recent study. “We aimed to investigate how the COVID-19 pandemic impacted self-reported disease management and healthcare-seeking behaviors, including avoidance and telehealth utilization, in a cohort of adult ADPKD patients,” Shetty and colleagues noted in their report recently published in BMC Nephrology.¹

Patient characteristics and study design

Researchers surveyed adult participants with ADPKD as part of an ongoing longitudinal study at the University of Maryland School of Medicine, with particular focus on the impact of the COVID-19 pandemic on patients who had not developed end-stage kidney disease (ESKD). Participants were excluded if they were on dialysis, had a prior kidney transplant, or had an eGFR <15 ml/min/1.73m².²

Of the 239 patients active study participants, 194 were invited to participate in the COVID-19 survey, 69 accepted and 3 of these were excluded, resulting in a total 66 respondents included in the analysis. Among responders, mean (SD) age was 46.1 (13.3) years, 51% were female, 91% self-reported as White race/ethnicity, and mean (SD) eGFR was 75.2 (32.2) ml/min/1.73m², with 25 (37.9%) having an eGFR >60 ml/min/1.73m². The 44-item survey was conducted over the phone from July 2022 to November 2022 and covered topics related to concern about contracting COVID-19, healthcare access, perception of disease management during the pandemic.²

No significant difference existed in demographic factors, ADPKD severity, or healthcare behaviors between participants with high and low levels of concern for contracting COVID-19. The two groups also did not differ significantly with respect to frequency of COVID-19 infection, telehealth use, or use of non-prescription medication to prevent COVID-19 infection. At the time of the survey, 93.4% of participants reported they were fully vaccinated. Nonetheless, the study found that 51.5% of participants with ADPKD tested positive for COVID-19 during the pandemic. While 14.7% had multiple infections, only 2 required hospitalization.²

Extent of healthcare avoidance 

As noted, the COVID-19 pandemic led to disruptions and modifications in healthcare access worldwide, including an increase in telehealth use. In this study about a quarter of the participants (n=17; 25.8%) reported new healthcare avoidance because of the pandemic. Compared to patients who continued medical care during the pandemic, participants who avoided healthcare were more likely to have contracted COVID-19 [76.5% vs 42.9% (P=.02)], used non-prescribed medications for COVID-19 [35.3% vs 8.2% (P=.01)], and used telehealth more frequently [88.2% vs 42.9% (P=.002)]. However, despite avoiding healthcare, their level of concern about contracting COVID-19 was similar to those who did not avoid healthcare.²

How patients perceived management of their ADPKD

Among those who reported at least “very good” disease management prior to the pandemic (n=53; 80.3%), 89% (n=47) reported no significant change in self-management after the pandemic began. The authors attributed this to the fact that patients had good access to telehealth services, and patients reported an average of 4.39 telehealth appointments during the pandemic. The authors noted that “[t]his may have enabled them to continue regular disease surveillance and management despite not being able to access in-person care, especially during the early phase of the pandemic.”²

In addition, patients who had lower self-reported disease management prior to the pandemic did not express increased concern about contracting COVID-19. Those who did express any increased concern attributed more of that concern to their ADPKD diagnosis.²

Study limitations and implications for clinical practice

The findings of this study have important implications for clinical practice, but some challenges remain to be addressed²: 

• The ordinal response system used in the questionnaire was subject to recall bias and varying interpretations. 
• Most participants were white, college-educated, and high-income, limiting the representation of diverse patient populations. 
• The questionnaire was modified from a general population survey and had not been validated for patients with ADPKD. 
• The time gap between clinical characterization and the COVID-19 questionnaire might have led to misclassification of ADPKD severity. 
• The small sample size and limited geographic diversity also constrained the generalizability of the findings.

The findings of this study highlight the importance of addressing the unique challenges faced by individuals with ADPKD during and after the pandemic. Although patients in this study did not experience significant negative short-term effects during the pandemic, the authors noted that long-term disease prognosis is unknown. Also, future studies should consider the potential for disruptions in healthcare access for patients in more diverse populations.²

Published: November 13, 2024