Table 3.
Barriers to care and impacts on employment, education, and personal relationships due to SCD
| Patients with SCD (N = 303) | ||
|---|---|---|
| n | % | |
| Barriers patients have experienced to receiving healthcare for SCDa | ||
| Difficulty affording healthcare services | 89 | 29.4 |
| Limited or lack of health insurance | 80 | 26.4 |
| Difficulty obtaining transportation to receive healthcare services | 51 | 16.8 |
| Discrimination or stigmatization by healthcare professionals | 120 | 39.6 |
| Difficulty trusting healthcare professionals | 101 | 33.3 |
| Limited or lack of specialized SCD centers, acute care centers, or day clinics | 118 | 38.9 |
| Other | 16 | 5.3 |
| None of the above | 74 | 24.4 |
| Impact on employmenta | ||
| Yes, it has positively impacted my employment status | 31 | 10.2 |
| Yes, it has negatively impacted my employment status | 179 | 59.1 |
| No, it has not impacted my employment status | 76 | 25.1 |
| Not applicable | 25 | 8.3 |
| Type of negative employment impactsa,b | ||
| Lost a job because of SCD | 69 | 38.5 |
| Stopped working because of SCD | 105 | 58.7 |
| Changed jobs/professions because of SCD | 54 | 30.2 |
| Reduced work hours because of SCD | 89 | 49.7 |
| Took a leave of absence or unpaid time off because of SCD | 94 | 52.5 |
| Changed job responsibilities because of SCD | 52 | 29.1 |
| Have not sought a promotion, or been granted a promotion because of SCD | 39 | 21.8 |
| Other | 21 | 11.7 |
| Impact on educationa | ||
| Yes, it has positively impacted my level of education | 48 | 15.8 |
| Yes, it has negatively impacted my level of education | 128 | 42.2 |
| No, it has not impacted my level of education | 107 | 35.3 |
| I do not know / I am not sure | 30 | 9.9 |
| Type of negative education impactsa,c | ||
| Did not enter a post-secondary school program (e.g., college or technical school) because of SCD | 9 | 7.0 |
| Changed area of study because of SCD | 29 | 22.7 |
| Delayed beginning a school program because of SCD | 32 | 25.0 |
| Delayed finishing a school program because of SCD | 60 | 46.9 |
| Dropped out of a school program because of SCD | 56 | 43.8 |
| Other | 27 | 21.1 |
| Negative impact on personal relationships | ||
| Yes | 153 | 50.5 |
| No | 106 | 35.0 |
| I do not know/I am not sure | 35 | 11.6 |
| Not applicable | 9 | 3.0 |
SCD sickle cell disease
aMultiple response options allowed; frequency sums to > 100%
bItems administered only to patients who indicated experiencing a negative impact on employment (N = 179)
cItems administered only to patients who indicated experiencing a negative impact on education (N = 128)