How Has COVID-19 Impacted Patients with Rare Conditions?
Over 600,000 Inspire members are affected by rare conditions. As a vital partner to 40 rare disease non-profit advocacy organizations, Inspire’s rare disease patient and caregiver members represent over 3,000 rare conditions. Serving as a common point across these diverse conditions, Inspire was uniquely positioned to learn how rare disease communities were being affected by COVID-19.
First, we noticed a surge of COVID-19 posts across all of Inspire through the month of March. Inspire’s research team began by reviewing some of these member communications to identify themes.
Themes in the data included concerns about healthcare rationing, distress about clinical trials being suspended, worry about the risks of using immunosuppressant medications, and discussions around social distancing — including posts about how having a chronic condition prepared many individuals for self-isolation or the sense of feeling trapped and closed in.
These insights were collected into four newsletters sent out to blog subscribers in March and April. One insight shared was the concern that “elective procedures” (e.g. X-rays, scans, fluoroscopy) were being postponed. For patients with cancer, postponing scans are of particular concern since a lack of monitoring could allow recurring tumors to grow. One caregiver shared her concerns about clinical trials:
My sister has been waiting patiently to get in a clinical trial, but now the major cancer centers have stopped accepting new patients because of the Coronavirus. For many with rare cancers or advanced cancer, a clinical trial is the only hope. This is so distressing. Is anyone experiencing this? What can we do? Cancer patients’ lives are important too — two, three or more months to wait until we can control the Coronavirus? Cancer patients cannot wait that long.” – Inspire member
Using this preliminary data, Inspire developed and sent a survey to patients and caregivers in early May across communities of members living with autoimmune, rare, oncological and respiratory conditions. Over 1,000 members of Inspire participated in this research. In July, a webinar, “How has the COVID-19 Pandemic Impacted Chronically Ill Patients? Patient Reported Outcomes from Social Distancing and COVID-19,” shared a preliminary analysis of these findings.
In addition to the survey, Inspire’s qualitative research team analyzed unstructured data about the pandemic’s impact on members dealing with rare conditions. This qualitative analysis complemented the quantitative data gained in the survey. The team obtained a sample of 8,020 posts through natural language processing (NLP) semantic tagging using keywords and phrases associated with the pandemic. From these, analysis using grounded theory identified recurring themes within a subset of 1,638 posts from more than 20 rare disease communities.
Meanwhile, further analysis conducted on the survey data focused specifically on members with rare disease. Some of the combined survey and real-world voice analyses findings revealed that rare disease patients and caregivers:
– Face barriers to medical care, including canceled or delayed appointments, procedures, transplants, and second opinions
– Experience the need for social and emotional support, with common emotions including fear and anxiety
– Share concerns about increased risk of complications and death from COVID-19 due to underlying rare diseases and rare disease treatments such as immunosuppressants
– Emphasize self-advocacy and persistence for achieving better care and outcomes
The results from these two analyses were presented at NORD’s Rare Disease and Orphan Products Breakthrough Summit held October 8-9 2020. For more details on our findings, download a copy of the poster today.
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