With the recent outbreak of the novel coronavirus (COVID-19) in the US, InCrowd wanted to understand how patients with chronic conditions and those who are immunocompromised have been impacted by the virus, and how they anticipate ways in which their lives and disease management will be affected moving forward. Patients from Rare Patient Voice contributed to this important research.
Executive Summary
- Over a quarter of patients report that their disease management has been impacted by the COVID-19 crisis, with no notable difference in the level of impact between patients with mild-moderate and moderate-severe disease.
- Many patients relay that access to care has been directly affected, mainly due to the fact they are afraid to leave their homes for treatment, or that cancellations, delays, and shortages have left them unable to receive the treatments and medications they need.
- In most cases, impact on patient care has been moderate, with patients reporting that they are struggling to manage their diseases up to their usual standards. However, in some cases, interferences with medical care have been severe, with several patients reporting that they are currently without the critical treatments that they rely on to live.
- Only 38% of respondents feel prepared to manage their health during the COVID-19 outbreak, with 70% reporting that they feel more concerned for their health during this time than usual. Over half (58%) report worry that they will lose access to their essential treatments.
- Many patients report a high likelihood of adjusting their treatment approaches, with the majority predicting switching to telehealth appointments, requesting additional supplies of medications, and postponing in-person appointments.
- A majority of patients are reporting major shifts in work and home life, with 89% adhering to social distancing. 68% report suffering from the effects of isolation from friends and family, and over half report dealing with stresses of fearing for the safety of themselves and loved ones.
- In addition to questioning their own provisions, respondents are similarly skeptical of governmental and medical preparedness during this time, with those under the age of 55 reporting significantly more concern over lack of precautions than their older peers.
- Less than a quarter feel that the US federal government is prepared to prevent the spread of COVID-19, however, sentiments about local governments are slightly higher (39% finding precautions adequate).
- Similarly, less than a quarter feel confident that their local hospitals are prepared to manage COVID-19 patients. Even fewer (22%) believe their hospitals to have adequate equipment, with the same small amount believing that they have the capacity to test those with symptoms.
- Despite their distresses, patients report an overwhelming amount of positive actions they’ve observed during this crisis, focused predominantly on the many ways that people are now uniting and looking out for each other, mainly through general community support, sacrificing autonomy for the greater good, and donating and volunteering supplies and services.
- When asked, 95% said they wish to continue sharing via surveys during the COVID-19 crisis, with many citing that they hope their experiences will contribute to helping others. Several respondents write that in sharing their opinions, larger audiences may empathize with their major stresses during this time, and this may potentially provoke much-needed policy changes.
