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NIMH Data Archive
NDA ABCD CCF OAI NIAAADA AMP SCZ HEAL

AASPIRE Health Integration

268 Shared Subjects

Survey to assess healthcare disparity in autistic adults including the following measures: AASPIRE Patient-Provider Communication Scale (PPCS-8) AASPIRE Health and Healthcare Self-Efficacy Scale (HHSES-21) AASPIRE Visit Preparedness Scale (VPS-6) AASPIRE Healthcare Accommodations Scale (HAS-8) Barriers to Healthcare Checklist - Short Form Unmet Healthcare Needs Checklist Nicolaidis et al., 2020 https://doi.org/10.1177%2F1362361320967178 Nicolaidis et al., 2016 https://doi.org/10.1007%2Fs11606-016-3763-6 Raymaker et al., 2016 https://doi.org/10.1177%2F1362361316661261 Nicolaidis et al., 2013 https://doi.org/10.1007%2Fs11606-012-2262-7
Clinical Assessments
Questionnaire
12/15/2017
aaspire01
03/02/2023
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 uid
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. preaut_age, sup_pre_born, suppre_age
sex String 20 Required Sex of subject at birth M;F; O; NR M = Male; F = Female; O=Other; NR = Not reported aut_pre_sex, gender, sup_prepers_sex, suppre_gender
elapsed_mins Integer Recommended Elapsed Minutes
machine_id String 100 Recommended Machine ID
grade_highed String 50 Recommended Grade/Highest education 1= Less than 6th grade; 2= Some high school; 3= High school diploma or GED; 4= Some college, no degree; 5= Associates degree; 6= Bachelors degree; 7= Some graduate school; 8= Masters degree and above; 9= Some post-graduate training, no degree; 10= Completed 8th grade, no high school; 11= High school; 12= College or University; 13= Graduate school; 14= Other; 15= Less than high school; 99= Information not available aut_prebasic_highschool, participant_highestdegree, sup_prepers_college, sup_prepers_highschool
race String 30 Recommended Race of study subject American Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reported; Other Non-White; Other aut_prebasic_racef, participant_race, sup_prepers_racef, suppre_racef
ethnicity String 30 Recommended Ethnicity of participant
Hispanic or Latino; Not Hispanic or Latino; Unknown
aut_prebasic_latino, participant_latinohisp, suppre_latin
aut_prebasic_care Integer Recommended Do you need assistance from someone to get medical or dental care? 0::3 0 = Always or often; 1 = Sometimes; 2 = Rarely or never; 3 = Do not know / Do not wish to say
aut_prebasic_comm Integer Recommended Think about your office visits with doctors, nurses, or other healthcare professionals. Do you usually talk with the healthcare providers or do you usually communicate in other ways? For example, do you usually sign, use pictures, use an interpreter, or use a speech device to communicate with them? 0::2 0= Talk; 1= Something else; 2= NA
aut_prebasic_help Integer Recommended Think about your office visits. How much help do you get from your supporters to communicate with providers? 0::2 0 = I mostly communicate with providers myself. 1 = I mostly communicate with providers myself, but someone helps me some of the time. 2 = Someone besides me does most or all of the communication.
aut_prebasic_health Integer Recommended In general, how would you rate your health? 1::5 1= Poor; 2 = Fair; 3 = Good; 4 = Very good; 5 = Excellent sup_prepers_rate
aut_prebasic_chronic Integer Recommended Have you been told by a doctor or other health professional that you have a chronic physical health condition? Some examples are high blood pressure, diabetes, congestive heart failure, epilepsy or seizures, emphysema, asthma, chronic bowel problems, and chronic pain. 0;1 0 = No;1 = Yes
aut_prebasic_mhealth Integer Recommended Have you been told by a doctor or other health professional that you have a mental health condition (not including Autism Spectrum Disorders). Some examples are depression, anxiety, post-traumatic stress disorder (PTSD), schizophrenia, and bipolar disorder. 0;1 0 = No;1 = Yes
aut_prebasic_insure99 String 255 Recommended What type(s) of health insurance do you have? sup_prepers_insurance99
aut_presatis_ask Integer Recommended My primary care provider gave me the chance to ask all the health related questions I had. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_ask, faut_presatis_askquestions
aut_presatis_emo Integer Recommended My primary care provider gave the attention I needed to my feelings and emotions. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_emo, faut_presatis_emotion
aut_presatis_decisions Integer Recommended My primary care provider involved me in decisions about my healthcare as much as I wanted. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_decisions, faut_presatis_decisions
aut_presatis_understood Integer Recommended My primary care provider made sure I understood the things I needed to do to take care of my health. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_understood, faut_presatis_understood
aut_presatis_uncertain Integer Recommended My primary care provider helped me deal with feelings of uncertainty about my health or healthcare. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_uncertain, faut_presatis_uncertain
aut_presatis_comm Integer Recommended My primary care provider understood what I was trying to communicate. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_comm, faut_presatis_comm
aut_presatis_pcpcomm Integer Recommended My primary care provider communicated in a way that I could understand. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_understand, faut_presatis_pcpcomm
aut_presatis_trust Integer Recommended I felt I could trust my primary care provider to take care of my healthcare needs. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree aut_postsatis_needs, faut_presatis_trust
aut_presatis_quality Integer Recommended Overall, how would you rate the quality of healthcare you received from your primary care provider? 1::5 1 = Poor; 2= Fair; 3= Good; 4= Very good; 5=Excellent aut_postsatis_quality, faut_postsatis_quality, faut_presatis_quality
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 aut_postbarriers_receive99
aut_prehuse_noreceive99 String 255 Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Do not wish to say) 0;1 0 = No;1 = Yes aut_prehuse_norecieve7f
aut_prehuse_times Integer Recommended During the past 6 months, how many times did you go to a hospital emergency room about your own health? (This includes emergency room visits that did or did not result in a hospital admission.) 0::4 0 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to say ftimeshospaut_prehuse_times, timeshospaut_prehuse_times
doctor_visit Integer Recommended During the past 6 months, how many times did you see a doctor or other healthcare professional about your own health at a doctor's office, a clinic, or some other place? 0::4 0 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to say ftimesdoctor_visit, healthcare_use3, timesdoctor_visit
aut_prehuse_pelvic Integer Recommended Within the past 3 years, have you had a pelvic exam and/or pap smear? 0::3 0 = No;1 = Yes; 2= NA; 3= Don’t Know fpelvicpapaut_prehuse_pelvic, pelvicpapaut_prehuse_pelvic
aut_prehuse_bpressure Integer Recommended Within the past 2 years, have you had your blood pressure checked? 0::2 0 = No; 1 =Yes; 2 = Don't Know bloodpressureaut_prehuse_bpres, fbloodpressureaut_prehuse_bpres, healthcare_use5
aut_prehuse_tetnus Integer Recommended Within the past 10 years, have you had a tetanus vaccine? 0::2 0 = No; 1 =Yes; 2 = Don't Know ftetanusaut_prehuse_tetanus, healthcare_use6, tetanusaut_prehuse_tetanus
aut_preconf_appoint Integer Recommended How confident are you that you can make an appointment with your healthcare provider when needed? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_appointment, faut_preconf_appoint
aut_preconf_scheduled Integer Recommended How confident are you that you can make it to a scheduled healthcare appointment? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_keepapp, faut_preconf_scheduled
aut_preconf_bring Integer Recommended How confident are you that you can bring what is needed to a healthcare visit? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_needed, faut_preconf_bring
aut_preconf_prepared Integer Recommended How confident are you that you can feel prepared at a healthcare visit? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_prepared, faut_preconf_prepared
aut_preconf_accom Integer Recommended How confident are you that you can get the accommodations you need for a successful healthcare visit? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_accom, faut_preconf_accom
aut_preconf_describe Integer Recommended How confident are you that you can describe your symptoms or healthcare concerns to your provider? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_describe, faut_preconf_describe
aut_preconf_answer Integer Recommended How confident are you that you can answer your healthcare provider's questions? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_answer, faut_preconf_answer
aut_preconf_understand Integer Recommended How confident are you that you can understand what your healthcare provider tells you about your health? 1::10 1= Not at all confident; 10= Totally confident faut_preconf_understand
communicate_effectively Integer Recommended How confident are you that you can communicate effectively with your healthcare provider? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_openly, fcommunicate_effectively
aut_preconf_open Integer Recommended How confident are you that you can be open with your healthcare provider about your feelings or concerns? 1::10 1= Not at all confident; 10= Totally confident faut_preconf_open, healthcare_conf_post10
aut_preconf_handle Integer Recommended How confident are you that you can handle (physically and/or emotionally) physical examinations, medical tests, or procedures? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_handle, fhandleexamaut_preconf_handle, handleexamaut_preconf_handle
aut_preconf_takepart Integer Recommended How confident are you that you can take part in healthcare decisions? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_decisions, faut_preconf_takepart, fsup_preconf_included
aut_preconf_makeitthru Integer Recommended How confident are you that you can make it through a healthcare visit without a melt-down, shut-down, or severe anxiety? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_makeitthru, faut_preconf_makeitthru
aut_preconf_medications Integer Recommended How confident are you that you can take medications the way you are supposed to take them? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_medication, faut_preconf_medications
aut_preconf_followup Integer Recommended How confident are you that you can do what is needed to follow-up after a visit (for example, make another appointment, get tests done, see a specialist, go to the pharmacy)? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_followup, faut_preconf_followup
aut_preconf_healthy Integer Recommended How confident are you that you can do what is needed to be as healthy as possible? For example, eat a healthy diet, exercise, relax, or brush your teeth. 1::10 1= Not at all confident; 10= Totally confident faut_preconf_healthy
aut_preconf_healthcon Integer Recommended How confident are you that you can do what is needed to take care of your health conditions (if you have any)? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_healthcons, faut_preconf_healthcon
aut_preconf_uprole Integer Recommended How confident are you that your provider will understand the role you want your supporter to play in your healthcare, if applicable? 1::10 1= Not at all confident; 10= Totally confident faut_preconf_uprole
aut_preconf_change Integer Recommended How confident are you that you can change healthcare providers if you want to? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_change, faut_preconf_change
aut_preconf_private Integer Recommended How confident are you that you can advocate or speak up for yourself? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_reliable, faut_preconf_private
aut_preconf_reliableinfo Integer Recommended How confident are you that you can find reliable sources of information about your health and health conditions? 1::10 1= Not at all confident; 10= Totally confident aut_postconf_private, faut_preconf_reliableinfo
bring_to_appointment Integer Recommended I brought everything I needed with me to the appointment, including anything that I was asked to bring or wanted to bring. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree fbring_to_appointment
important_topics Integer Recommended I came prepared with a list of the most important topics I wanted to discuss. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree fimportant_topics, visit_preparedness2
describe_symptoms Integer Recommended I was ready to describe my symptoms or concerns. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree fdescribe_symptoms, visit_preparedness3
answer_questions Integer Recommended I was prepared to answer my primary care provider's questions. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree fanswer_questions, visit_preparedness4
expect_appointment Integer Recommended I knew what to expect from my appointment. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree fexpect_appointment, visit_preparedness5
expect_provider Integer Recommended I knew what to expect from my primary care provider. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree fexpect_provider, visit_preparedness6
acc_apt Integer Recommended My clinic makes the accommodations I need to set and keep appointments. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree accomacc_apt, faccomacc_apt
acc_wait Integer Recommended My clinic makes the accommodations I need to handle the waiting room. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree facc_wait
acc_calm Integer Recommended My providers and their staff make the accommodations I need to stay calm and comfortable during a visit. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree facc_calm
acc_com Integer Recommended My providers and their staff make the accommodations I need to communicate what I wish to say. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree accommodations4, facc_com, supacc_com
acc_understand Integer Recommended My providers and their staff make the accommodations I need to understand what they are saying. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree accommodations5, facc_understand, supacc_understand
acc_exams Integer Recommended My providers and their staff make the accommodations I need to handle examinations or procedures. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree facc_exams, supacc_exam
acc_decision Integer Recommended My providers and their staff make the accommodations I need to take part in my own healthcare decisions. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree accommodations7, facc_decision, supacc_decide
acc_fu Integer Recommended My providers and their staff make the accommodations I need to follow their recommendations and plans. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree accommodations8, facc_fu, supacc_fu
acc_get String 255 Recommended What healthcare accommodations, if any, do you get? acc_getsupacc_get, accommodations9, facc_getsupacc_get, supacc_get
acc_need String 255 Recommended What additional healthcare accommodations, if any, would you like to get in the future (that you don't get now)? acc_needsupacc_need, accommodations10, facc_needsupacc_need, supacc_need
pr_knowhop5 String 150 Recommended Is there anything else that you would like to tell us? c_tell_researchers, ftell_researchers, tell_researchers
used_tk Integer Recommended Have you ever used the AASPIRE Healthcare Toolkit? 0;1 0= No; 1= Yes; 2= Dont Know fused_tk, sup_usedtk, toolkit_control1, toolkit_use_control1
basic_information0 Integer Recommended Have you seen your primary care provider since you started this study? (about 6 months ago)? 0::4 0 = Yes; 1 = No, but scheduled; 2 = No, not scheduled; 3 = I do not know; 4 = I do not wish to say f_seenpcp, seenpcp
basic_information1 Integer Recommended Have you changed primary care providers since you started this study (about 6 months ago)? 0::3 0 = No; 1 = Yes; 2 = Do not know; 3 = Do not wish to say aut_change_provider, faut_change_provider
basic_information2 Integer Recommended Have you switched to a different primary care clinic since you started this study (about 6 months ago)? 0::3 0 = No; 1 = Yes; 2 = Do not know; 3 = Do not wish to say
healthcare_use199 String 255 Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get.
vis2 Integer Recommended In the past 6 months, how many different visits have you made to a hospital emergency room or an urgent care facility? healthcare_use2
healthcare_use4 Integer Recommended Within the past 3 years, have you had a pelvic exam and/or Pap smear? 0;1 0= No; 1= Yes
healthcare_conf_post8 Integer Recommended How confident are you that you can understand what your healthcare provider says about your health? 1::10 1= Not at all confident; 10= Totally confident
aut_postconf_healthy Integer Recommended How confident are you that you can do what is needed to keep yourself as healthy as possible? For example, eat a healthy diet, exercise, relax, or brush your teeth. 1::10 1= Not at all confident; 10= Totally confident
healthcare_conf_post18 Integer Recommended How confident are you that you can get your provider to understand the role you want your supporter to play in your healthcare, if applicable? 1::10 1= Not at all confident; 10= Totally confident
visit_preparedness1 Integer Recommended I brought everything I needed with me to the appointment. 0::5 5 = Strongly Agree; 4 = Agree; 3 = Neither Agree Nor Disagree; 2 = Disagree; 1 = Strongly Disagree
aut_posteval_device Integer Recommended When you used the Healthcare Toolkit, which type of device did you use most? 0::3 0 = Regular computer (for example, desktop, laptop, notebook, etc.); 1 = Tablet (for example, iPad, Kindle Fire, Google Nexus, etc.); 2 = Smart phone or personal data assistant (PDA); 3 = Other aut_tool_device, faut_tool_device
aut_posteval_devicef String 255 Recommended When you used the Healthcare Toolkit, which type of device did you use most? Other, Specify aut_tool_devicef, faut_tool_devicef
aut_posteval_browser Integer Recommended When you used the Healthcare Toolkit, which web browser did you use most? 0::6 0 = Chrome; 1 = FireFox; 2 = Internet Explorer version 9 or higher; 3 = Internet Explorer version 8 or lower; 4 = Safari; 5 = Opera; 6 = Other aut_tool_browser, faut_tool_browser
aut_posteval_browserf String 255 Recommended When you used the Healthcare Toolkit, which web browser did you use most? Other, Specify aut_tool_browserf, faut_tool_browserf
aut_posteval_easy Integer Recommended How easy was it to use the Healthcare Toolkit web site (with help if needed)? 0::4 0 = Very easy; 1 = Somewhat easy; 2 = Somewhat hard; 3 = Very hard; 4 = Do not wish to say aut_easy_site, faut_easy_site
toolkit_eval_post4 Integer Recommended How much of the information in the Healthcare Toolkit was easy to understand (with help if needed)? 0::4 0 = Less than half; 1 = About half; 2 = Most; 3 = All or almost all; 4 = Do not wish to say aut_tool_easy, faut_tool_easy
toolkit_eval_post5 Integer Recommended How important is the information in the Healthcare Toolkit? 0::3 0 = Not important; 1 = Kind of important; 2 = Very important; 3 = Do not wish to say aut_toolkit_imp, faut_toolkit_imp
toolkit_eval_post6 Integer Recommended How useful was the information in the Healthcare Toolkit? 0::3 0 = Very useful; 1 = Somewhat useful; 2 = Not useful; 3 = Do not wish to say aut_tool_useful, faut_tool_useful
toolkit_eval_post7 Integer Recommended Would you recommend the Healthcare Toolkit to a friend? 0;1 0= No; 1= Yes aut_tool_recommend, faut_tool_recommend
toolkit_eval_post8 Integer Recommended Would you recommend the Healthcare Toolkit to healthcare providers? 0;1 0= No; 1= Yes aut_tool_provider, faut_tool_provider
aut_posteval_likebest String 255 Recommended What did you like best about the Healthcare Toolkit? aut_best_int, faut_best_int
aut_posteval_likeleast String 255 Recommended What did you like least about the Healthcare Toolkit? aut_least_int, faut_least_int
aut_posteval_mostuseful String 255 Recommended What did you find most useful about the Healthcare Toolkit? aut_tool_usefulint, faut_tool_usefulint
toolkit_eval_post12 String 255 Recommended Do you have any suggestions for how we can improve the Healthcare Toolkit? toolkit_evaluation12
aut_posteval_howuse String 255 Recommended How did you use the Healthcare Toolkit materials or strategies when you saw your healthcare provider? aut_tool_use, faut_tool_use
how_visit_went String 255 Recommended How did your visit with your healthcare provider go? Do you think what you learned from the Healthcare Toolkit made a difference in how the visit went? aut_tool_learn, faut_tool_learn
aut_posteval_permission Integer Recommended Did you give permission for us to send the customized accommodations report to your healthcare provider? (Though the AASPIRE researchers know your answer, the survey program doesn't :-) 0;1 0= No; 1= Yes aut_accom_provider, faut_accom_provider
aut_posteval_goover Integer Recommended Did you go over the accommodations report with your healthcare provider? 0;1 0= No; 1= Yes aut_suggest_int, faut_suggest_int
aut_posteval_effect Integer Recommended What effect, if any, do you think the report had on your relationship with your healthcare provider? 0 = It made things a lot worse; 1 = It made things a little worse; 2 = It didn't make a difference; 3 = It made things a little better; 4 = It made things a lot better aut_report_relationship, faut_report_relationship
aut_posteval_makechanges String 255 Recommended Do you think your healthcare provider (or his or her team) will make any changes because of the accommodations report? Include anything they have promised or already done, as well as things you think they are likely to do. aut_provider_change, faut_provider_change
aut_posteval_howimprove String 255 Recommended Do you have any suggestions for how we can improve the accommodations report?
end_post0 Integer Recommended How much help, if any, did you get to take part in this study? (Note: it is OK if you got help. We just want to know how many people got help). 0::3 0 = None; 1 = Someone helped me a little bit.; 2 = Someone helped me a lot.; 3 = Do not wish to say. end0, fhowmuch_help, howmuch_help
comments_misc String 4,000 Recommended Miscellaneous comments on study, interview, methodology relevant to this form data
suppre_suptype5 String 255 Recommended Which of the following describes your relationship to the patient you are supporting? (Other) 0;1 0=no; 1=yes
sup_preconf_included Integer Recommended How confident are you that the patient is being included in healthcare decisions as much as possible? 1::10 1= Not at all confident; 10= Totally confident sup_postconf_included
sup_pronoun Integer Recommended The personalized report for the patient's doctor will need to refer to the patient using a pronoun. The options available right now are "he" and "she" We apologize that we cannot offer additional options at this time. Which pronoun does the patient wish to use? 0; 1 0= she/her/hers; 1= he/him/his
version_form String 121 Recommended Form used/assessment name
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 faut_prebarrier_receive1
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 faut_prebarrier_receive2
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 faut_prebarrier_receive3
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 faut_prebarrier_receive4
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 faut_prebarrier_receive5
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 faut_prebarrier_receive6
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 faut_prebarrier_receive7
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 faut_prebarrier_receive8
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 faut_prebarrier_receive9
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 faut_prebarrier_receive10
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 faut_prebarrier_receive11
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 faut_prebarrier_receive12
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 faut_prebarrier_receive13
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 faut_prebarrier_receive14
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 faut_prebarrier_receive15
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 faut_prebarrier_receive16
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 faut_prebarrier_receive17
aut_prehuse_noreceive1 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Medical care for a physical health problem) 0;1 0= no; 1= yes faut_prehuse_norecieve1
aut_prehuse_noreceive2 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Preventive healthcare (including routine physical examinations)) 0;1 0= no; 1= yes faut_prehuse_norecieve2
aut_prehuse_noreceive3 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Mental healthcare or counseling) 0;1 0= no; 1= yes faut_prehuse_norecieve3
aut_prehuse_noreceive4 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Dental care (including dental checkups)) 0;1 0= no; 1= yes faut_prehuse_norecieve4
aut_prehuse_noreceive5 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Prescription medicines) 0;1 0= no; 1= yes faut_prehuse_norecieve5
aut_prehuse_noreceive6 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Eyeglasses or contact lenses) 0;1 0= no; 1= yes faut_prehuse_norecieve6
aut_prehuse_noreceive7 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Other [other]) 0;1 0= no; 1= yes faut_prehuse_norecieve7
fkindof_help0 Integer Recommended What kind of help, if any, did you get while you were taking part in this study? (Check all that apply). Someone helped me use the computer 0;1 0= no; 1= yes
fkindof_help1 Integer Recommended What kind of help, if any, did you get while you were taking part in this study? (Check all that apply). Someone helped me read the questions in the survey 0;1 0= no; 1= yes
fkindof_help2 Integer Recommended What kind of help, if any, did you get while you were taking part in this study? (Check all that apply). Someone helped me understand what the questions on the survey meant 0;1 0= no; 1= yes
fkindof_help3 Integer Recommended What kind of help, if any, did you get while you were taking part in this study? (Check all that apply). Someone helped me answer the questions on the survey 0;1 0= no; 1= yes
fkindof_help4 Integer Recommended What kind of help, if any, did you get while you were taking part in this study? (Check all that apply). I did not get any help on the survey 0;1 0= no; 1= yes
fkindof_help5 Integer Recommended What kind of help, if any, did you get while you were taking part in this study? (Check all that apply). Do not wish to say 0;1 0= no; 1= yes
fsup_input_survey Integer Recommended How much input did you get from the patient when answering the survey questions? 0::2 0=I answered questions on patient's behalf, no direct input from them; 1=I answered the questions on patient's behalf, fair amount of input from them; 2= I provided assistance so patient could mostly answer the questions for themselves
participant_insurance_1 Integer Recommended What types of health insurance do they have? Check all that apply. Private Insurance 0;1 0= no; 1= yes
participant_insurance_2 Integer Recommended What types of health insurance do they have? Check all that apply. Medicare 0;1 0= no; 1= yes
participant_insurance_3 Integer Recommended What types of health insurance do they have? Check all that apply. Medicaid 0;1 0= no; 1= yes
participant_insurance_4 Integer Recommended What types of health insurance do they have? Check all that apply. Other government insurance 0;1 0= no; 1= yes
participant_insurance_5 Integer Recommended What types of health insurance do they have? Check all that apply. He/she has insurance, but I am not sure what type 0;1 0= no; 1= yes
participant_insurance_6 Integer Recommended What types of health insurance do they have? Check all that apply. Other [other] 0;1 0= no; 1= yes
suppre_suptype1 Integer Recommended Which of the following describes your relationship to the patient you are supporting? Check all. Family member 0;1 0= no; 1= yes
suppre_suptype2 Integer Recommended Which of the following describes your relationship to the patient you are supporting? Check all. Foster parent 0;1 0= no; 1= yes
suppre_suptype3 Integer Recommended Which of the following describes your relationship to the patient you are supporting? Check all. Direct support provider 0;1 0= no; 1= yes
suppre_suptype4 Integer Recommended Which of the following describes your relationship to the patient you are supporting? Check all. Friend 0;1 0= no; 1= yes
respondent_other_specify String 50 Recommended Respondent: Other (specify)
grad_high_school Integer Recommended Did you graduate high school? 0;1 0 = No; 1 = Yes aut_prebasic_highschool
aut_prebasic_diploma Integer Recommended Did you get a regular diploma or a modified diploma? 0;1 0= Regular; 1= Modified
aut_prebasic_college Integer Recommended Were you ever enrolled in college? 0;1 0 = No; 1 = Yes
es1b Integer Recommended Do you have College degree 0;1; 9 0=No; 1=Yes; 9=missing aut_prepost_degree
aut_prebasic_highestf String 255 Recommended What is the highest degree you got? (Other, Specify)
suppre_edu Integer Recommended What is your level of education? (Supporter) 0::6 0=Less than High School; 1= High School diploma or Equivalent; 2= Associates; 3= Bachelors; 4 = Masters/ Graduate Certificate; 5 = Doctorate; 6 = Other
aut_prebasic_live Integer Recommended Where do you live? 0::3 0= Place they own or rent; 1=With family; 2= Group Home/Foster Home; 3= Other
ethnic_group String 255 Recommended Ethnic group aut_prebasic_racef
participant_insurance_95 Integer Recommended What type(s) of health insurance do you have? (None) 0; 1 0 = No; 1 = Yes
participant_insurance_98 Integer Recommended What type(s) of health insurance do you have? (I do not know) 0;1 0 = No; 1 = Yes
participant_insurance_99 Integer Recommended What type(s) of health insurance do you have? (Do not wish to say) 0;1 0 = No; 1 = Yes
ffuture_contact Integer Recommended Is it OK for AASPIRE to contact you by email about our studies in the future? 0;1 0 = No; 1 = Yes
end_post10 Integer Recommended What kind of help, if any, did you get while you were taking part in this study? (Check all that apply). 0::5 0 = Someone helped me use the computer (for example, click on the links); 1 = Someone helped me read the questions in the survey.; 2 = Someone helped me understand what the questions on the survey meant.; 3 = Someone helped me answer the questions on the survey.; 4 = I did not get any help to take part in the study.; 5 = Do not wish to say
aut_prebarrier_receive17f String 255 Recommended Which of the following barriers keep you from receiving good healthcare? (Select all that apply) (Other, Specify) faut_prebarrier_receive17f
aut_prehuse_noreceive7f String 255 Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (Other, Specify) faut_prehuse_norecieve7f
participant_insurance_6f String 255 Recommended What type(s) of health insurance do you have? (Other, Specify)
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 faut_prebarrier_receive98
living_notes String 255 Recommended Living arrangements (specify) aut_prebasic_livef
aut_prehuse_noreceive95 Integer Recommended During the past 6 months, was there a time when you felt that you needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt you needed but did not get. (None of the above) 0; 1 0 = No; 1 = Yes faut_prehuse_noreceive95
groups Integer Recommended Group 0;1 0=Control; 1=Case group
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

At the top of this page you can also:

  • Use the search bar to filter the elements displayed. This will not filter on the Size of Required columns
  • Download a copy of this definition in CSV format
  • Download a blank CSV submission template prepopulated with the correct structure header rows ready to fill with subject records and upload

Please email the The NDA Help Desk with any questions.

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