Table 3.
Comparison Barriers to Healthcare Checklist (Long Form).
| Potential barrier | Autistic group N = 209 |
Disability group N = 55 |
p autistic/disability | NAND group N = 173 |
p autistic/NAND |
|---|---|---|---|---|---|
| 1. Emotional | |||||
| Fear or anxiety keeps me from getting primary care | 74 (35%) | 10 (18%)* | 0.015 | 17 (10%)* | <0.001 |
| Embarrassment keeps me from getting primary care | 54 (26%) | 7 (13%)* | 0.041 | 10 (6%)* | <0.001 |
| I worry that the stress of interacting with the healthcare system will cause me to lose control of myself (e.g. melt down, shut down, freak out) | 53 (26%) | 3 (6%)* | 0.001 | 4 (2%)* | <0.001 |
| Frustration or anger keeps me from getting primary care | 49 (23%) | 5 (9%)* | 0.019 | 6 (4%)* | <0.001 |
| Lack of confidence keeps me from getting primary care | 48 (23%) | 5 (9%)* | 0.023 | 7 (4%)* | <0.001 |
| Fatigue or pain keeps me from getting primary care | 22 (11%) | 9 (17%) | 0.227 | 2 (1%)* | <0.001 |
| 2. Executive function | |||||
| I have trouble following up on care (e.g. going to pharmacy, taking prescribed drugs at the right time, or making a follow-up appointment) | 48 (23%) | 7 (13%) | 0.098 | 6 (4%)* | <0.001 |
| I often miss appointments due to memory problems | 24 (12%) | 6 (11%) | 0.912 | 1 (1%)* | <0.001 |
| I have trouble following medical instructions in the way they are presented to me | 31 (15%) | 0 (0%)* | 0.002 | 0 (0%)* | <0.001 |
| I have difficulty understanding how to translate medical information into concrete steps that I can take to improve my health | 25 (12%) | 4 (7%) | 0.326 | 0 (0%)* | <0.001 |
| 3. Healthcare navigation | |||||
| I don’t understand the healthcare system or I find it too hard to work through (e.g. managed care, billing system) | 56 (27%) | 4 (7%)* | 0.002 | 13 (7%)* | <0.001 |
| I find it too hard to seek primary care or follow-up with primary care | 44 (21%) | 5 (9%)* | 0.043 | 7 (4%)* | <0.001 |
| I have problems filling out paperwork | 25 (12%) | 2 (4%) | 0.07 | 0 (0%)* | <0.001 |
| 4. Provider attitudes | |||||
| My behaviors are misinterpreted by my provider or the staff | 42 (20%) | 3 (6%)* | 0.01 | 2 (1%)* | <0.001 |
| My providers or the staff do not believe me when I tell them that new symptoms I experience are not related to an existing condition or disability | 23 (19%) | 9 (16%) | 0.627 | 4 (2%)* | <0.001 |
| My providers or the staff do not take my communications seriously | 31 (15%) | 4 (7%) | 0.138 | 3 (2%)* | <0.001 |
| My providers or the staff are unwilling to communicate with me in the mode I’ve specified (e.g. writing down instructions instead of saying them out loud) | 20 (10%) | 1 (2%) | 0.058 | 0 (0%)* | <0.001 |
| I cannot find a provider who will accommodate my needs | 16 (8%) | 8 (15%) | 0.114 | 0 (0%)* | <0.001 |
| 5. Patient-provider communication | |||||
| I cannot process information fast enough to participate in real-time discussions about healthcare | 67 (32%) | 4 (7%)* | <0.001 | 1 (1%)* | <0.001 |
| I have difficulty communicating with my doctors or the staff | 61 (29%) | 5 (9%)* | 0.002 | 4 (2%)* | <0.001 |
| I have trouble following spoken directions | 49 (24%) | 3 (6%)* | 0.003 | 1 (1%)* | <0.001 |
| Appointments are too short to accommodate my communication needs | 43 (21%) | 7 (13%) | 0.182 | 7 (4%)* | <0.001 |
| I have difficulty moving or communicating effectively when in crisis | 42 (20%) | 3 (6%)* | 0.01 | 1 (1%)* | <0.001 |
| When I experience pain and/or other physical symptoms, I have difficulties identifying them and reporting them to my healthcare provider | 48 (23%) | 3 (6%)* | 0.003 | 3 (2%)* | <0.001 |
| 6. Sensory | |||||
| Healthcare facilities cause me sensory discomfort (e.g. the lights, smells or sounds make visits uncomfortable) | 62 (30%) | 5 (9%)* | 0.002 | 2 (1%)* | <0.001 |
| Sensory issues (e.g. sensitivity to light, sounds, or smells) make it difficult for me to communicate well in healthcare settings | 55 (26%) | 2 (4%)* | <0.001 | 2 (1%)* | <0.001 |
| Sensory issues (e.g. sensitivity to light, sounds, or smells) make tests, screenings and medical exams difficult or impossible | 49 (24%) | 3 (6%)* | 0.003 | 2 (1%)* | <0.001 |
| 7. Socio-economic | |||||
| Concern about the cost of care keeps me from getting primary care | 62 (30%) | 15 (28%) | 0.74 | 29 (16%)* | 0.003 |
| I don’t have insurance coverage | 27 (13%) | 2 (4%) | 0.055 | 13 (7%) | 0.087 |
| My insurance coverage does not cover medications or the co-payments are too high | 25 (12%) | 9 (17%) | 0.408 | 11 (6%)* | 0.046 |
| My insurance coverage does not cover care coordination services | 21 (10%) | 5 (10%) | 0.87 | 0 (0%)* | <0.001 |
| I have trouble getting reimbursements for atypical treatments (e.g. pool therapy) | 20 (10%) | 9 (17%) | 0.134 | 3 (2%)* | 0.001 |
| Transportation costs too much | 34 (17%) | 5 (9%) | 0.171 | 2 (1%)* | <0.001 |
| I live in rural areas or the doctor’s office is too far away | 25 (12%) | 2 (4%) | 0.066 | 3 (2%)* | <0.001 |
| Co-payment is too high | 15 (07%) | 6 (11%) | 0.337 | 7 (04%) | 0.193 |
| Waiting for insurance plan approval | 13 (06%) | 7 (13%) | 0.093 | 5 (03%) | 0.128 |
| 8. Support | |||||
| I am socially isolated | 56 (26%) | 10 (18%) | 0.184 | 2 (1%)* | <0.001 |
| I have inadequate social, family, or caregiver support | 44 (21%) | 10 (18%) | 0.627 | 2 (1%)* | <0.001 |
| I have difficulty getting personal assistance | 28 (14%) | 5 (10%) | 0.384 | 1 (1%)* | <0.001 |
| 9. Waiting | |||||
| I find it hard to handle the waiting room | 43 (21%) | 4 (7%)* | 0.022 | 6 (4%)* | <0.001 |
| The wait in the healthcare office is too long for me | 38 (18%) | 7 (13%) | 0.338 | 11 (7%)* | 0.001 |
Bold indicates a statistically significant result.