Table 3.

Provider interactions regarding the VTE event

CharacteristicAll participants
(N = 1058)
Source of information regarding first blood clot diagnosis   
Doctor, physician assistant, or nurse practitioner 989 (93.5) 
Nurse 133 (12.6) 
Friend or family member 64 (6.0) 
Patient advocate 7 (0.7) 
Social worker 3 (0.3) 
Other 70 (6.6) 
Time spent with provider when told about the first blood clot diagnosis  
≤5 minutes 257 (24.3) 
6-10 minutes 343 (37.0) 
11-20 minutes 160 (17.3) 
21-30 minutes 90 (9.7) 
31-60 minutes 32 (3.5) 
>60 minutes 45 (4.9) 
Alone at the time of diagnosis 507 (48.1) 
Did you understand your diagnosis when it was first told to you?  
Yes, completely 188 (17.9) 
Yes, for the most part 332 (31.5) 
Some of it made sense and some of it did not 213 (20.2) 
Not entirely 193 (18.3) 
I was completely lost 127 (12.1) 
Visits needed for correct diagnosis  
740 (70.4) 
127 (12.1) 
89 (8.5) 
44 (4.2) 
≥5 50 (4.8) 
Felt signs and symptoms were taken seriously at first presentation  
Yes 756 (72.1) 
No 293 (27.9) 
Reasons why signs and symptoms not taken seriously (n = 293)   
Young age 126 (43.0) 
Gender or sex 56 (19.1) 
Advanced age 11 (3.8) 
Race/ethnicity 9 (3.1) 
Lack of health insurance 8 (2.7) 
Race/ethnicity differed from that of health care provider 6 (2.0) 
Member of the LGBTQ+ community 2 (0.7) 
Other 175 (59.7) 
Offered printed or electronic information at the time of first diagnosis  
Yes 166 (15.7) 
No 695 (65.8) 
Do not recall 195 (18.5) 
Type of information provided at the time of first diagnosis (n = 166)   
Pamphlets/written material 135 (81.3) 
Website 14 (8.4) 
Electronic, such as a video 4 (2.4) 
Other 9 (5.4) 
Do not recall 22 (13.3) 
Topics of information provided at the time of first diagnosis (n = 166)   
Follow-up recommendations 107 (64.5) 
Treatment options 91 (54.8) 
Causes 81 (48.8) 
Risk of death or disability 53 (31.9) 
Incidence 30 (18.1) 
Other 7 (4.2) 
Do not recall 21 (12.7) 
Appropriateness of information provided at first diagnosis (n = 166)  
Helpful and adequate in helping understand diagnosis 80 (48.8) 
Too basic, provided little knowledge 62 (37.8) 
Too complex and difficult to understand 4 (2.4) 
Do not recall 18 (11.0) 
CharacteristicAll participants
(N = 1058)
Source of information regarding first blood clot diagnosis   
Doctor, physician assistant, or nurse practitioner 989 (93.5) 
Nurse 133 (12.6) 
Friend or family member 64 (6.0) 
Patient advocate 7 (0.7) 
Social worker 3 (0.3) 
Other 70 (6.6) 
Time spent with provider when told about the first blood clot diagnosis  
≤5 minutes 257 (24.3) 
6-10 minutes 343 (37.0) 
11-20 minutes 160 (17.3) 
21-30 minutes 90 (9.7) 
31-60 minutes 32 (3.5) 
>60 minutes 45 (4.9) 
Alone at the time of diagnosis 507 (48.1) 
Did you understand your diagnosis when it was first told to you?  
Yes, completely 188 (17.9) 
Yes, for the most part 332 (31.5) 
Some of it made sense and some of it did not 213 (20.2) 
Not entirely 193 (18.3) 
I was completely lost 127 (12.1) 
Visits needed for correct diagnosis  
740 (70.4) 
127 (12.1) 
89 (8.5) 
44 (4.2) 
≥5 50 (4.8) 
Felt signs and symptoms were taken seriously at first presentation  
Yes 756 (72.1) 
No 293 (27.9) 
Reasons why signs and symptoms not taken seriously (n = 293)   
Young age 126 (43.0) 
Gender or sex 56 (19.1) 
Advanced age 11 (3.8) 
Race/ethnicity 9 (3.1) 
Lack of health insurance 8 (2.7) 
Race/ethnicity differed from that of health care provider 6 (2.0) 
Member of the LGBTQ+ community 2 (0.7) 
Other 175 (59.7) 
Offered printed or electronic information at the time of first diagnosis  
Yes 166 (15.7) 
No 695 (65.8) 
Do not recall 195 (18.5) 
Type of information provided at the time of first diagnosis (n = 166)   
Pamphlets/written material 135 (81.3) 
Website 14 (8.4) 
Electronic, such as a video 4 (2.4) 
Other 9 (5.4) 
Do not recall 22 (13.3) 
Topics of information provided at the time of first diagnosis (n = 166)   
Follow-up recommendations 107 (64.5) 
Treatment options 91 (54.8) 
Causes 81 (48.8) 
Risk of death or disability 53 (31.9) 
Incidence 30 (18.1) 
Other 7 (4.2) 
Do not recall 21 (12.7) 
Appropriateness of information provided at first diagnosis (n = 166)  
Helpful and adequate in helping understand diagnosis 80 (48.8) 
Too basic, provided little knowledge 62 (37.8) 
Too complex and difficult to understand 4 (2.4) 
Do not recall 18 (11.0) 

Data are shown as n (%). Data are missing for the time spent with provider (n = 131), alone at diagnosis (n = 4), understanding of diagnosis (n = 5), visits needed for correct diagnosis (n = 7), symptoms taken seriously (n = 9), satisfaction with explanation (n = 10), offered information (n = 2), and appropriateness of information (n = 2). LGBTQ+, Lesbian, Gay, Bisexual, Transgender, Queer/Questioning, and Others.

Respondents could select >1 response option, and thus totals may sum to >100%.

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