|
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 :: 1260
|
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 |
|
|
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 |