TABLE 3.

Barriers to Sickle Cell Disease Care Checklist

Barriers CategoryFrequency
Barriers related to SCD
    I am in pain28
    I am tired26
    Frustration or anger22
    Worry or fear20
    No barriers11
    Lack of confidence10
    It is embarrassing7
    Concerned about the costs6
    Hard to be assertive6
Provider knowledge and attitudes
    No barriers23
    Not enough experiences with or knowledge about SCD19
    Not seen quickly enough when in pain16
    Don’t believe I am in genuine pain13
    Accused of drug seeking12
    Treated differently from other patients10
    Communication between me and provider is difficult9
    No appreciation of how knowledgeable I am about SCD3
Hydroxyurea use
    No barrier22
    I forget to take the medication10
    Other barrier8
    Don’t like thinking about SCD when I am well6
    Worried about the side effects6
    Don’t know enough about the medicine3
    It is hard to take the medicine at the right time3
    I tried it and it did not work3
    Heard some scary things about this medicine2
    I don’t like the frequent blood tests2
    I don’t like the frequent clinic visits2
    Not interested in taking another medicine2
    Doctor does not recommend it2
    There are other things going on in my life that are more important than taking this medicine1
Social, family, and caregiver support
    No barriers33
    I need help with daily chores/activities7
    The people who take care of me or give me support are burned out7
    I am socially isolated5
    There are other things in my family that are more important than my health care4
    I am burned from providing care to others4
    It is hard to make appointments because it is hard for me to find childcare during2
    I do not have enough support2
Access & accommodation within places you get health care
    No barriers31
    Wait in health care office is too long11
    Health care providers’ hours are not convenient for me7
    Places for me to go learn how to stay well are not close by or easy to get to7
    I could not get an appointment2
    The paperwork I have to fill out is too much2
Barriers for individuals
    No barriers35
    Staff is hard to talk to5
    I don’t understand the system or find it too hard to work through5
    Medical system is very confusing to me3
    Staff is hard to understand3
    I missed appointments because of my memory problems3
    Other health problems have higher priority2
    It is hard to follow up on care (e.g., by going to the pharmacy, taking medicines at the right time or making follow up appointments)2
    Don’t know what to do to stay healthy2
    I am not interested in getting SCD care1
    I don’t know enough about the SCD care that I need1
    Hard for staff to get a hold of me (e.g., I move a lot or don’t have a phone)0
    Medical instructions are hard to follow0
Insurance
    No barriers38
    My insurance will not cover needed services if I have to go to a different county3
    Getting reimbursement for some services is hard3
    Does not cover medicines or my copay are too high3
    Does not cover services that will keep me well3
    Doesn’t cover services I need3
    My insurance paperwork too hard to fill out2
    It takes too long to get approval for care2
    My insurance doesn’t allow me to go where I want for service2
    No insurance0
Transportation
    No barriers34
    I do not have a vehicle8
    Public transit is not easy to get to6
    Transportation costs too much for me3
    I can’t get transportation2
    I do not have access to a vehicle1
Access to service
    No barriers45
    I can’t get care because the health care provider’s office is too far away2
    I don’t know where to get care2
  • Note. Missing = participants who provided no response to the survey item.