Themes captured in open-ended questions and representative quotes
| General positive experiences | |
| “Providers that listened and took my symptoms seriously have saved my life twice (and my son's life as I was in the first trimester when I got my first blood clot).” [Respondent 617] “Radiologists and pharmacists are fantastic and are a massively under recognized when it comes to patient care. Without exception, in my interactions they have always been incredibly helpful, reassuring, calming and knowledgeable.” [Respondent 423] “I had an excellent hospital doctor. He sat with me every day and talked about the different types of clots I had.” [Respondent 769] | |
| Areas for improvement | |
| Health care delivery | |
| Validation of symptoms/lack of empathy | “I will take a blood thinner for the rest of my life. At diagnosis it was life threatening. Now doctors act like it’s no big deal.” [Respondent 64] |
| Delay in diagnosis | “I wish the maternity departments we're more educated on blood clots because maybe I would have been treated more appropriately and quickly.” [Respondent 836] |
| Access to health care/insurance | “I was in between insurance and was not directed to get follow-up care from the hospital had to find it myself.” [Respondent 192] |
| Coordination of care | “It caused me a lot of stress not knowing who to turn to. My nurse practitioner said it wasn't her. One of the other pcp docs wouldn't help either. I felt lost and frustrated.” [Respondent 729] |
| Awareness of disease/symptoms | |
| Pain/cramping | “I was unable to walk due to the pain in my groin and leg.” [Respondent 228] |
| Shortness of breath | “That often they don't know why this happened or how long I might be hospitalized. Most importantly, that I may never completely recover my breathing and might experience shortness of breath for the rest of my life.” [Respondent 274] |
| Fatigue | “I had to ask for ADA at work to help support my fatigue, brain fog, and stamina problems. I was on O2 for months afterwards.” [Respondent 512] |
| Advocate for self | “Pay attention to things that feel odd/not normal. Ask for information if you don’t understand something.” [Respondent 112] |
| Support groups | “There are groups like the NBCA who are available to support you and to hear it from real live people. Reach out to groups that can help you.” [Respondent 149] |
| Impact on long-term health | |
| Mental health | “The mental impact of DVT/PE post incident is real and life altering.” [Respondent 5] |
| Reproductive health | “I wish that the risks of contraception were talked about more, and the numbers were shown more clearly.” [Respondent 211] |
| Access to information | |
| Etiology and thrombophilia testing | “I wanted the genetic test to see if I had anything I have factor V Leiden. Now I wish I didn't know because it's a preexisting condition and excludes me from several things that actually could benefit me.” [Respondent 100] |
| Management | “My primary doctor had no clue how to monitor my INR while on Coumadin and had to find my own team.” [Respondent 8] |
| Recurrence and long-term expectations | “Nobody told me how long I’d feel this way. Nobody prepared me for what to expect longer term.” [Respondent 109] |
| Other not specified | “The meanings of terms like ‘unprovoked,’ ‘bilateral,’ ‘right heart strain,’ and what exactly those things meant. A glossary of common diagnosis terms for the lay person would be great because I spent time searching each word when I got home.” [Respondent 350] |
| General positive experiences | |
| “Providers that listened and took my symptoms seriously have saved my life twice (and my son's life as I was in the first trimester when I got my first blood clot).” [Respondent 617] “Radiologists and pharmacists are fantastic and are a massively under recognized when it comes to patient care. Without exception, in my interactions they have always been incredibly helpful, reassuring, calming and knowledgeable.” [Respondent 423] “I had an excellent hospital doctor. He sat with me every day and talked about the different types of clots I had.” [Respondent 769] | |
| Areas for improvement | |
| Health care delivery | |
| Validation of symptoms/lack of empathy | “I will take a blood thinner for the rest of my life. At diagnosis it was life threatening. Now doctors act like it’s no big deal.” [Respondent 64] |
| Delay in diagnosis | “I wish the maternity departments we're more educated on blood clots because maybe I would have been treated more appropriately and quickly.” [Respondent 836] |
| Access to health care/insurance | “I was in between insurance and was not directed to get follow-up care from the hospital had to find it myself.” [Respondent 192] |
| Coordination of care | “It caused me a lot of stress not knowing who to turn to. My nurse practitioner said it wasn't her. One of the other pcp docs wouldn't help either. I felt lost and frustrated.” [Respondent 729] |
| Awareness of disease/symptoms | |
| Pain/cramping | “I was unable to walk due to the pain in my groin and leg.” [Respondent 228] |
| Shortness of breath | “That often they don't know why this happened or how long I might be hospitalized. Most importantly, that I may never completely recover my breathing and might experience shortness of breath for the rest of my life.” [Respondent 274] |
| Fatigue | “I had to ask for ADA at work to help support my fatigue, brain fog, and stamina problems. I was on O2 for months afterwards.” [Respondent 512] |
| Advocate for self | “Pay attention to things that feel odd/not normal. Ask for information if you don’t understand something.” [Respondent 112] |
| Support groups | “There are groups like the NBCA who are available to support you and to hear it from real live people. Reach out to groups that can help you.” [Respondent 149] |
| Impact on long-term health | |
| Mental health | “The mental impact of DVT/PE post incident is real and life altering.” [Respondent 5] |
| Reproductive health | “I wish that the risks of contraception were talked about more, and the numbers were shown more clearly.” [Respondent 211] |
| Access to information | |
| Etiology and thrombophilia testing | “I wanted the genetic test to see if I had anything I have factor V Leiden. Now I wish I didn't know because it's a preexisting condition and excludes me from several things that actually could benefit me.” [Respondent 100] |
| Management | “My primary doctor had no clue how to monitor my INR while on Coumadin and had to find my own team.” [Respondent 8] |
| Recurrence and long-term expectations | “Nobody told me how long I’d feel this way. Nobody prepared me for what to expect longer term.” [Respondent 109] |
| Other not specified | “The meanings of terms like ‘unprovoked,’ ‘bilateral,’ ‘right heart strain,’ and what exactly those things meant. A glossary of common diagnosis terms for the lay person would be great because I spent time searching each word when I got home.” [Respondent 350] |
ADA, Americans with Disabilities Act; INR, International normalized ratio.