COVID-19 IMD Community Survey Follow Up Thank you for taking the time to respond to this follow-up survey. We are working hard to learn how the pandemic continues to affect the IMD community, and your input is vital. The link we sent you had a unique identifier in it we use to make sure there are no duplicate entries and we can correlate this survey response with your previous one. Please return to your email and click on the link again. Let's Recap - Have these things changed?This first set of questions are similar to those in our initial survey. We want to see if your responses have changed since you last responded.Is your medical FORMULA or FOOD coverage secured through an employer-provided plan?* Yes No I don't have medical nutrition coverage I don't require medical nutrition If yes, are you at risk of being laid off or furloughed and losing your medical nutrition coverage?* Yes, I’ve already been laid off or furloughed and lost coverage Yes, I’m at risk of being laid off or furloughed and losing coverage No Have you had any of the following issues starting after March 14th, 2020 that may be related to the pandemic? Delays in obtaining approval from clinic for formula, low-protein modified food, or supplements Delays in insurance approval of formula, low-protein modified food, or supplements Delays in processing or shipping of formula, low-protein modified food, or supplements Delays in turnaround time for regularly-scheduled blood tests to monitor levels Difficulty finding low-protein grocery staples Delays or difficulting in obtaining medications to treat IMD Delays in research studies or clinical trials that you were participating in/were preparing to participate in Loss of Employment Reduction of Employment Loss of Childcare Details on barriers to careIf you checked any of the boxes above, please provide additional details on the delays or barriers you have faced. Has your clinic changed procedures or modified appointments in any of these ways? Asked that you do blood draws at local centers & send in rather than come into clinic Switched to dry blood spot (DBS) testing from home, rather than in-clinic blood draws Offered telemedicine appointments Have you received guidance from your metabolic clinic specific to your disorder & COVID-19? If yes, please explain.How have you consulted with your metabolic team since mid-March 2020?Please select all that apply In-Person Visit Telemedicine Visit Electronic Communication Have you or anyone in your immediate family been diagnosed with COVID-19*Please include only those who live in the same residence with you. Yes No Prefer not to answer Was this diagnosis confirm by laboratory testing?* Yes No I don't know What's New: How Have Things Changed in the Last 2 Months?This next set of questions looks specifically at how your access to care has changed in the last two (2) months (since mid-April 2020).How is your household's employment and/or financial situation relative to how it was in mid-April 2020?*This refers to whether you or members of your household have lost employment, had your hours reduced, or other professional setbacks.How is your household's access to medical care for IMD relative to how it was in mid-April 2020?*This refers to the ability to attend appointments, engage in clinical trials, etc. How is your household's access to medical treatment for IMD relative to how it was in mid-April 2020?*Treatment refers to medical formula, food, or medication to treat IMD.What are the biggest obstacles to adequate care for your/your family member's IMD in the current situation?Social & Emotional Effects of the Pandemic on IMD HouseholdsHaving a rare disease can be isolating; the current situation can make that worse, but some have been finding connection and support within their rare communities. Please share your experience. What effect has the pandemic had on your personal feelings of isolation, or those in your household?*Has the pandemic affected your engagement with your rare disease community?*Many IMD organizations are providing virtual and online support. Has this been helpful to you? Yes, it has been helpful It might be, but I haven't had a chance to take advantage No, it has not been helpful I'm not interested in virtual support I'm not aware of such support options Do you feel like you're getting adequate support from your rare disease community?* No, I need more support Yes, I'm getting adequate support Please share any specific comments on the above.
