How has the COVID-19 Pandemic Impacted Chronically Ill Patients? Patient Reported Outcomes

By Kathleen Hoffman, PhD, MSPH

Research in health and medicine has largely used quantitative methods. Using mixed methods, combining qualitative research with quantitative, is still relatively new. As the COVID-19 pandemic moved the world home and online, our team of qualitative researchers¹ (while respecting member privacy) observed and documented themes within the online communication of chronically ill patients on Inspire. Inspire fielded a quantitative survey to document the impact.

Telehealth Appointments

In May the team observed and documented comments about telehealth appointments. They found patients and caregivers – although appreciative that providers have migrated to telehealth so that they can connect with patients – believe telehealth has made it harder for doctors to evaluate their conditions and symptoms. Patients, in particular, remark that virtual visits do not seem as effective as in-person visits for physical symptoms. Patients and caregivers feel that when they need to be diagnosed or carefully examined, they overwhelmingly prefer an in-person appointment.

The qualitative team also observed patient reports of stopping medications because of COVID-19. Some write of their healthcare providers’ concern that their previous regimen might increase their susceptibility to COVID-19. Prednisone was one of the most commonly mentioned medications that patients reported tapering or stopping. Within a month, these patients began experiencing flares. They are now either restarting their treatments or beginning to look into new treatments.

Lack of Treatment Options

Caregivers are frustrated with the lack of treatment options for loved ones with advanced cancers. Because COVID-19 has stopped recruitment, caregivers ask others on Inspire which trials are still open and when trials will begin recruiting again.

Patients and caregivers describe how difficult the clinical trial application process is and feel it is even more challenging during the pandemic since many trials are not accepting applications.

As part of the process of deciding to participate in clinical trials, patients and caregivers post that it is important to talk to their healthcare providers and get a second opinion before joining. Patients wonder if the pandemic will make getting a second opinion harder.

Survey Development

This Thursday, June 25 at 2pm ET, we will present these themes and more findings from the survey at a free webinar – How has COVID-19 impacted chronically ill patients? Patient Reported Outcomes of Social Distancing and COVID-19. Please join us.