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Barriers to Healthcare

0 Shared Subjects

The Barriers to Healthcare checklist was designed to assess healthcare accessibility among ASD (Autism Spectrum Disorder) and non-ASD individuals. It consists of both a short and a long-form version. The short form is part of the AASPIRE (Academic Autism Spectrum Partnership in Research and Education) Heath Integration Survey Instruments. https://doi.org/10.1177%2F1362361316661261
Clinical Assessments
Autism Spectrum Disorders; Communication; Disability; Discrimination; Interview; Life Events; Social Support; Victimization
02/22/2023
bth01
05/15/2023
View Change History
01
Definition
Submission Template
Query Element Name Data Type Size Required Description Value Range Notes Aliases
subjectkey GUID Required The NDAR Global Unique Identifier (GUID) for research subject NDAR*
src_subject_id String 20 Required Subject ID how it's defined in lab/project
interview_date Date Required Date on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYY
interview_age Integer Required Age in months at the time of the interview/test/sampling/imaging. 0::1440 Age is rounded to chronological month. If the research participant is 15-days-old at time of interview, the appropriate value would be 0 months. If the participant is 16-days-old, the value would be 1 month.
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported
bth_emotional1 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Fear or anxiety keeps me from getting primary care. 0;1 0= No; 1= Yes
bth_emotional2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Embarrassment keeps me from getting primary care. 0;1 0= No; 1= Yes
bth_emotional3 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) 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). 0;1 0= No; 1= Yes
bth_emotional4 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Frustration or anger keeps me from getting primary care. 0;1 0= No; 1= Yes
bth_emotional5 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Lack of confidence keeps me from getting primary care. 0;1 0= No; 1= Yes
bth_emotional6 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Fatigue or pain keeps me from getting primary care. 0;1 0= No; 1= Yes
aut_prebarrier_receive10 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I have trouble following up on care (for example, going to pharmacy, taking prescribed drugs at the right time, or making a follow-up appointment).) 0;1 0= no; 1= yes bth_executive1, bth_short2
bth_executive2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I often miss appointments due to memory problems. 0;1 0= No; 1= Yes
bth_executive3 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I have trouble following medical instructions in the way they are presented to me. 0;1 0= No; 1= Yes
aut_prebarrier_receive11 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I have difficulty understanding how to translate medical information into concrete steps that I can take to improve my health.) 0;1 0= no; 1= yes bth_executive4, bth_short3
aut_prebarrier_receive8 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I don't understand the healthcare system or I find it too hard to work through (e.g. managed care, billing system).) 0;1 0= no; 1= yes bth_navigation1, bth_short4
aut_prebarrier_receive2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (It is too difficult to make appointments / I find it too hard to seek primary care or follow-up with primary care.) 0;1 0= no; 1= yes bth_navigation2, bth_short5
aut_prebarrier_receive3 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I have problems filling out paperwork.) 0;1 0= no; 1= yes bth_navigation3, bth_short6
aut_prebarrier_receive15 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (My behaviors are misinterpreted by my provider or the staff.) 0;1 0= no; 1= yes bth_provider1, bth_short7
bth_provider2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) 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. 0;1 0= No; 1= Yes
aut_prebarrier_receive16 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (My providers or the staff do not take my communications seriously.) 0;1 0= no; 1= yes bth_provider3, bth_short8
bth_provider4 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) 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). 0;1 0= No; 1= Yes
aut_prebarrier_receive6 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I cannot find a healthcare provider who will accommodate my needs.) 0;1 0= no; 1= yes bth_provider5, bth_short9
aut_prebarrier_receive14 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (My providers or the staff do not include me in discussions about my health) 0;1 0= no; 1= yes bth_provider6, bth_short10
bth_communication1 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I cannot process information fast enough to participate in real-time discussions about healthcare. 0;1 0= No; 1= Yes
bth_communication2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I have difficulty communicating with my doctors or the staff. 0;1 0= No; 1= Yes
bth_communication3 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I have trouble following spoken directions. 0;1 0= No; 1= Yes
bth_communication4 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Appointments are too short to accommodate my communication needs. 0;1 0= No; 1= Yes
bth_communication5 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I have difficulty moving or communicating effectively when in crisis. 0;1 0= No; 1= Yes
aut_prebarrier_receive12 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (When I experience pain and/or other physical symptoms, I have difficulties identifying them and reporting them to my healthcare provider.) 0;1 0= no; 1= yes bth_communication6, bth_short12
bth_sensory1 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Healthcare facilities cause me sensory discomfort (e.g. the lights, smells, or sounds make visits uncomfortable). 0;1 0= No; 1= Yes
bth_sensory2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Sensory issues (e.g. sensitivity to light, sounds, or smells) make it difficult for me to communicate well in healthcare settings. 0;1 0= No; 1= Yes
bth_sensory3 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Sensory issues (e.g. sensitivity to light, sounds, or smells) make tests, screenings and medical exams difficult or impossible. 0;1 0= No; 1= Yes
bth_socioeconomic1 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Concern about the cost of care keeps me from getting primary care. 0;1 0= No; 1= Yes
bth_socioeconomic2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I don''t have insurance coverage. 0;1 0= No; 1= Yes
bth_socioeconomic3 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) My insurance coverage does not cover medications or the co-payments are too high. 0;1 0= No; 1= Yes
bth_socioeconomic4 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) My insurance coverage does not cover care coordination services. 0;1 0= No; 1= Yes
bth_socioeconomic5 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I have trouble getting reimbursements for atypical treatments (e.g. pool therapy). 0;1 0= No; 1= Yes
bth_socioeconomic6 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Transportation costs too much. 0;1 0= No; 1= Yes
bth_socioeconomic7 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I live in rural area or the doctor''s office is too far away. 0;1 0= No; 1= Yes
bth_support1 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I am socially isolated. 0;1 0= No; 1= Yes
aut_prebarrier_receive7 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I have inadequate social, family, or caregiver support.) 0;1 0= no; 1= yes bth_short16, bth_support2
bth_support3 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) I have difficulty getting personal assistance. 0;1 0= No; 1= Yes
aut_prebarrier_receive4 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I find it hard to handle the waiting room.) 0;1 0= no; 1= yes bth_short17, bth_waiting1
bth_waiting2 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) The wait in the healthcare office is too long for me. 0;1 0= No; 1= Yes
aut_prebarrier_receive9 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (Fear, anxiety, embarrassment, or frustration keeps me from getting primary care.) 0;1 0= no; 1= yes bth_short1
aut_prebarrier_receive13 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (Communication with my healthcare provider or the staff is too difficult.) 0;1 0= no; 1= yes bth_short11
aut_prebarrier_receive5 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (Sensory discomforts (for example, the lights, smells or sounds) get in the way of my healthcare.) 0;1 0= no; 1= yes bth_short13
bth_short14 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) Concerns about cost or insurance coverage keep me from getting primary care. 0;1 0= No; 1= Yes
aut_prebarrier_receive1 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (I do not have a way to get to my doctor's office.) 0;1 0= no; 1= yes bth_short15
aut_prebarrier_receive17 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (Other [other]) 0;1 0= no; 1= yes
aut_prebarrier_receive98 Integer Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (None of the above) 0; 1 0 = No; 1 = Yes
aut_prebarrier_receive99 String 255 Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (Do not wish to say) 0;1 0 = No;1 = Yes
bth_short1_true Integer Recommended Does fear, anxiety, embarrassment, or frustration keep you from getting primary care? 1::5 1= Not true; 5= Very true bth_1
bth_short2_true Integer Recommended Do you have trouble following up on care (for example, going to pharmacy, taking prescribed drugs at the right time, or making a follow-up appointment)? 1::5 1= Not true; 5= Very true bth_2
bth_short3_true Integer Recommended Do you have difficulty understanding how to translate medical information into concrete steps that you can take to improve your health? 1::5 1= Not true; 5= Very true bth_3
bth_short4_true Integer Recommended Do you understand the healthcare system? 1::5 1= Not true; 5= Very true bth_4
bth_short5_true Integer Recommended Is it too difficult for you to make appointments? 1::5 1= Not true; 5= Very true bth_5
bth_short6_true Integer Recommended Do you have problems filling out paperwork? 1::5 1= Not true; 5= Very true bth_6
bth_short7_true Integer Recommended Are your behaviors misinterpreted by the provider or the staff? 1::5 1= Not true; 5= Very true bth_7
bth_short8_true Integer Recommended Do the providers or the staff take your communications seriously? 1::5 1= Not true; 5= Very true bth_8
bth_short9_true Integer Recommended Can you find a provider who will accommodate your needs? 1::5 1= Not true; 5= Very true bth_9
bth_short10_true Integer Recommended Does your providers or the staff include you in discussions about your health? 1::5 1= Not true; 5= Very true bth_10
bth_short11_true Integer Recommended Are the communications with your healthcare provider or the staff too difficult? 1::5 1= Not true; 5= Very true bth_11
bth_short12_true Integer Recommended When you experience pain and/or other physical symptoms, do you have difficulties identifying them and reporting them to your healthcare provider? 1::5 1= Not true; 5= Very true bth_12
bth_short13_true Integer Recommended Do sensory discomforts (for example, sensitivity to light, sounds, or smells) get in the way of your healthcare? 1::5 1= Not true; 5= Very true bth_13
bth_short14_true Integer Recommended Do concerns about the cost or insurance coverage keep you from getting healthcare? 1::5;9 1= Not true; 5= Very true; 9= Does not apply to me bth_14
bth_short15_true Integer Recommended Does transportation keep you from getting healthcare? 1::5 1= Not true; 5= Very true bth_15
bth_short16_true Integer Recommended Do you have the support you need from others to get healthcare? 1::5 1= Not true; 5= Very true bth_16
bth_short17_true Integer Recommended Do you find it hard to handle the waiting room? 1::5 1= Not true; 5= Very true bth_17
comments_misc String 4,000 Recommended Miscellaneous comments on study, interview, methodology relevant to this form data bth_comments
barriers2_language Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Language problems 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_time Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Lack of time for services 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_transport Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Transportation 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_eligiblew Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) [youth_first_name] not being eligible for the service 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_information Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Lack of information about services 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_other Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Other 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_other_sp String 200 Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Other, please provide details
barriers2_none Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) N/A. Have not experienced any of the above 0;1;999 0= No; 1= Yes; 999= Missing
timepoint_label String 50 Recommended Timepoint/visit label
barriers1 Integer Recommended Overall, do you think that your son/daughter is getting enough services? 0::2;999 0= No; 1= Yes; 2= Not getting services and does not need them at this time; 999= Missing
barriers2_cost Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Cost of services 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_where Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Where services are provided 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_available Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Services not being available 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_accessibility Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Physical accessibility of services 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_quality Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Poor service quality 0;1;999 0= No; 1= Yes; 999= Missing
barriers2_scheduling Integer Recommended Thinking about the past year, have any of the following been a problem in getting or dealing with services? (Choose all that apply) Scheduling conflicts 0;1;999 0= No; 1= Yes; 999= Missing
Data Structure

This page displays the data structure defined for the measure identified in the title and structure short name. The table below displays a list of data elements in this structure (also called variables) and the following information:

  • Element Name: This is the standard element name
  • Data Type: Which type of data this element is, e.g. String, Float, File location.
  • Size: If applicable, the character limit of this element
  • Required: This column displays whether the element is Required for valid submissions, Recommended for valid submissions, Conditional on other elements, or Optional
  • Description: A basic description
  • Value Range: Which values can appear validly in this element (case sensitive for strings)
  • Notes: Expanded description or notes on coding of values
  • Aliases: A list of currently supported Aliases (alternate element names)
  • For valid elements with shared data, on the far left is a Filter button you can use to view a summary of shared data for that element and apply a query filter to your Cart based on selected value ranges

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