In spring 2020, Parent Project Muscular Dystrophy (PPMD) released a survey to better understand the patient experience with care, trials, and access to approved therapies during the COVID-19 pandemic.
Thank you to everyone who contributed data to this survey! PPMD has been creating resources and developing strategies based on the learnings from the data. Key learnings from the data are outlined below, and a full Community Report is available (download).
In the coming weeks, PPMD plans to release a follow-on survey where we will dive into specific issues based on our learnings from this first survey. We appreciate the community’s willingness to provide this information in order to help us develop better support materials and resources for everyone impacted by Duchenne and Becker.
Key learnings from the data include:
- A majority of respondents (72%) did not have their annual clinic appointment cancelled or rescheduled at the time of taking the survey. Survey responses were entered between April 2020 and June 2020.
- 32% of respondents reported concern about accessing physical therapy. PPMD recently produced a series of home PT videos, we were able to release the videos during the pandemic. parentprojectmd.org/physicaltherapy
- 77% of those who answered this question reported some kind of financial impact due to the COVID-19 pandemic.
- 62% of respondents were unsure of whether or not telemedicine was available at their neuromuscular clinic. In response to what we learned from this question, PPMD produced a webinar on telehealth to inform community members about the process and how to make the most out of telehealth visits. parentprojectmd.org/telehealth
- Of those reporting they were currently enrolled in a clinical trial, 46% indicated changes had occurred to the normal schedule and protocols. Of those reporting changes, 65% reported they had delayed testing for efficacy and that the delay was attributed to the clinic making the decision.
- The highest reported concerns related to the COVID-19 pandemic were concerns over impact on mental health (29%), followed by worry over a family member or person with Duchenne or Becker getting COVID-19 (23%), and fear of going back into society (16%). In response to this data, PPMD has organized several webinars and Family Friday discussions about coping with stress and re-entry with school, and we developed care related resources specific to COVID-19. Webinars: parentprojectmd.org/covid19webinars
- Physical Therapy Video Series
- Making the Most of Your Telehealth Appointments
- PPMD COVID-19 (Coronavirus) Information Center
- COVID-19 Webinar Series