Characterizing the Impact of the Covid-19 Pandemic on Adults with Autosomal Dominant Polycystic Kidney Disease: A Cross-Sectional Study

TL;DR

This study examines how the Covid-19 pandemic affected adults with Autosomal Dominant Polycystic Kidney Disease, finding that most managed their condition well but some avoided medical care.

Contribution

The study is the first to investigate the impact of the pandemic on adults with ADPKD, focusing on healthcare behaviors and telehealth use.

Findings

Most participants reported well-managed ADPKD before the pandemic and no significant decline during it.

About 25% of participants avoided medical care, using more telehealth and non-prescribed medications.

Those who avoided care were more likely to contract Covid-19.

Abstract

The Covid-19 pandemic greatly affected those with chronic diseases, impacting healthcare access and healthcare seeking behaviors. The impact of the pandemic on adults with Autosomal Dominant Polycystic Kidney Disease (ADPKD) has not been investigated.

Participants were recruited from a cohort of 239 ADPKD patients enrolled in a longitudinal study at the University of Maryland. Patients on renal replacement therapy were excluded. N = 66 patients participated in a phone questionnaire from June 2022-December 2022 about ADPKD-related complications, concern about contracting Covid-19, healthcare-seeking behaviors, and telehealth utilization before and after March 2020.

N = 34 (51.5%) of participants reported a positive Covid-19 test result and N = 29 (44%) expressed high concern of contracting Covid-19. Those who avoided medical care at least once (N = 17, 25.8%) had similar demographics and ADPKD severity to those who did not, but reported greater telehealth utilization (88.2% vs. 42.9%, p = 0.002), greater use of non-prescribed medication for Covid-19 treatment or prevention (35.3% vs. 8.2%, p = 0.01), and were more likely to contract Covid-19 (76.5% vs. 42.9%, p = 0.02). Among the N = 53 who reported very good or excellent ADPKD disease management pre-pandemic, N = 47(89%) reported no significant change during the pandemic.

In this highly educated, high-income cohort with a mean age of 46.1 years, most people reported well-managed ADPKD prior to the pandemic. This may explain why less than half of participants expressed high concern for contracting Covid-19. Overall, there was no significant pandemic-related decline in self-reported ADPKD management, like due to excellent access to, and uptake of, telehealth services. Notably, 1 in 4 participants reported healthcare avoidant behavior, the effect of which may only be seen years from now. Future studies should investigate potential impacts of avoidant behaviors, as well as expand investigation to a more diverse cohort whose care may not have been as easily transitioned to telehealth.

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