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The Filter Cart provides a way to query and access data for which you may be interested.  There are multiple places to go query and Add to Filter Cart (Sometimes called Download).  

A few points related to the filter cart are important to understand with the NDA Query/Filter implementation: 

First, the filter cart is populated asyncronously.  So, when you add subjects, sometimes it may take a few minutes to populate.  You can continue to do other things during this time. 

When you are adding your first filter, all data associated with your query will be added to the filter cart (whether it be a collection, a concept, a study, a data structure/elment or subjects). Not all data available for the subjects selected will necessarily be displayed.  For example, if you select the NDA imaging structure image03, and further restrict that query to scan_type fMRI, only fMRI images will appear and only the image03 structure will be available.  However, if you want to see all of the clinical and phenotype, then select, "Find All Subject Data" to see all the data avaialble for those subjects.  

when a secord or third filter is applied, an AND condition is used to determine the subjects that are exist in all filters.  If the subject does not appear in any filter, that subjects data will be excluded from your filter cart. Given the sparcity of data in the NDA, it is possible for no subjects to appear across filters.  If that happens, clear your filter cart, and start over.  

The NDA is looking to enhance query/filtering.  Until additional tools become available, it is best to package more data than you need and then package and download the data and use other tools to further restrict and analyze the data.  If you have any questions on data access, are interested in using avaialble web services or need help accessing data, please contact us for assistance.  

Frequently Asked Questions

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The filters you have selected from various query interfaces will be stored here, in the 'Filter Cart'. The database will be queried using filters added to your 'Filter Cart', when multiple filters are defined, each will be executed using 'AND' logic, so with each filter that is applied the result set gets smaller.

From the 'Filter Cart' you can inspect each of the filters that have been defined, and you also have the option to remove filters. The 'Filter Cart' itself will display the number of filters applied along with the number of subjects that are identified by the combination of those filters. For example a GUID filter with two subjects, followed by a GUID filter for just one of those subjects would return only data for the subject that is in both GUID filters.

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AASPIRE Health Integration

aaspire

01

AASPIRE Health Integration

Download Definition as
Download Submission Template as
Element NameData TypeSizeRequiredDescriptionValue RangeNotesAliases
subjectkeyGUIDRequiredThe NDAR Global Unique Identifier (GUID) for research subjectNDAR*
src_subject_idString20RequiredSubject ID how it's defined in lab/projectuid
interview_dateDateRequiredDate on which the interview/genetic test/sampling/imaging/biospecimen was completed. MM/DD/YYYYRequired field
interview_ageIntegerRequiredAge in months at the time of the interview/test/sampling/imaging.0 :: 1260Age 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
genderString20RequiredSex of the subjectM;FM = Male; F = Femaleaut_pre_sex, sup_prepers_sex, suppre_gender
elapsed_minsIntegerRecommendedElapsed Minutes
machine_idString100RecommendedMachine ID
grade_highedString50RecommendedGrade/Highest education1 = Less than 6th grade; 2 = Some high school; 3 = High school diploma or GED; 4 = Some college, no degree; 5 = Associate's degree; 6 = Bachelor's degree; 7 = Some graduate school; 8 = Master's degree and above; 9=Some post-graduate training, no degree; 10=Completed 8th grade, no high school; 99=Information not available; 11= High schoo;l 12= College or University; 13= Graduate school; 14= Other; 15 = Less than high schoolaut_prebasic_highestf, aut_prebasic_highschool, sup_prepers_college, sup_prepers_highschool
raceString30RecommendedRace of study subjectAmerican Indian/Alaska Native; Asian; Hawaiian or Pacific Islander; Black or African American; White; More than one race; Unknown or not reportedaut_prebasic_racef, sup_prepers_racef, suppre_racef
ethnicityString30RecommendedEthnicity of participantHispanic or Latino; Not Hispanic or Latino; Unknownaut_prebasic_latino, suppre_latin
aut_prebasic_careIntegerRecommendedDo you need assistance from someone to get medical or dental care?0::30 = Always or often; 1 = Sometimes; 2 = Rarely or never; 3 = Do not know / Do not wish to say
aut_prebasic_commIntegerRecommendedThink 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::30 = 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.; 3 = Do not wish to say.
aut_prebasic_helpIntegerRecommendedThink about your office visits. How much help do you get from your supporters to communicate with providers?0::30 = I mostly communicate with providers myself.
aut_prebasic_healthIntegerRecommendedIn general, how would you rate your health?0::50 = Excellent; 1 = Very good; 2 = Good; 3 = Fair; 4 = Poor; 5 = Do not wish to saysup_prepers_rate
aut_prebasic_chronicIntegerRecommendedHave 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;10 = No;1 = Yes
aut_prebasic_mhealthIntegerRecommendedHave 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;10 = No;1 = Yes
aut_prebasic_insure99String255RecommendedWhat type(s) of health insurance do you have?sup_prepers_insurance99
aut_presatis_askIntegerRecommendedMy primary care provider gave me the chance to ask all the health related questions I had.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_ask
aut_presatis_emoIntegerRecommendedMy primary care provider gave the attention I needed to my feelings and emotions.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_emo
aut_presatis_decisionsIntegerRecommendedMy primary care provider involved me in decisions about my healthcare as much as I wanted.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_decisions
aut_presatis_understoodIntegerRecommendedMy primary care provider made sure I understood the things I needed to do to take care of my health.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_understood
aut_presatis_uncertainIntegerRecommendedMy primary care provider helped me deal with feelings of uncertainty about my health or healthcare.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_uncertain
aut_presatis_commIntegerRecommendedMy primary care provider understood what I was trying to communicate.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_comm
aut_presatis_pcpcommIntegerRecommendedMy primary care provider communicated in a way that I could understand.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_understand
aut_presatis_trustIntegerRecommendedI felt I could trust my primary care provider to take care of my healthcare needs.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaut_postsatis_needs
aut_presatis_qualityIntegerRecommendedOverall, how would you rate the quality of healthcare you received from your primary care provider?0::50 = Excellent; 1 = Very good; 2 = Good; 3 = Fair; 4 = Poor; 5 = Do not wish to sayaut_postsatis_quality
aut_prebarrier_receive99String255RecommendedWhich of the following barriers keep you from receiving good healthcare? (Select all that apply)aut_postbarriers_receive99
aut_prehuse_noreceive99String255RecommendedDuring 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.
aut_prehuse_timesIntegerRecommendedDuring 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::40 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to say
doctor_visitIntegerRecommendedDuring 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::40 = 0 timeshealthcare_use3
aut_prehuse_pelvicIntegerRecommendedWithin the past 3 years, have you had a pelvic exam and/or pap smear?0;10 = No;1 = Yes
aut_prehuse_bpressureIntegerRecommendedWithin the past 2 years, have you had your blood pressure checked?0;10 = No;1 = Yeshealthcare_use5
aut_prehuse_tetnusIntegerRecommendedWithin the past 10 years, have you had a tetanus vaccine?0;10 = No;1 = Yeshealthcare_use6
aut_preconf_appointIntegerRecommendedHow confident are you that you can make an appointment with your healthcare provider when needed?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_appointment
aut_preconf_scheduledIntegerRecommendedHow confident are you that you can make it to a scheduled healthcare appointment?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_keepapp
aut_preconf_bringIntegerRecommendedHow confident are you that you can bring what is needed to a healthcare visit?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_needed
aut_preconf_preparedIntegerRecommendedHow confident are you that you can feel prepared at a healthcare visit?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_prepared
aut_preconf_accomIntegerRecommendedHow confident are you that you can get the accommodations you need for a successful healthcare visit?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_accom
aut_preconf_describeIntegerRecommendedHow confident are you that you can describe your symptoms or healthcare concerns to your provider?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_describe
aut_preconf_answerIntegerRecommendedHow confident are you that you can answer your healthcare provider's questions?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_answer
aut_preconf_understandIntegerRecommendedHow confident are you that you can understand what your healthcare provider tells you about your health?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confident
communicate_effectivelyIntegerRecommendedHow confident are you that you can communicate effectively with your healthcare provider?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_openly
aut_preconf_openIntegerRecommendedHow confident are you that you can be open with your healthcare provider about your feelings or concerns?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidenthealthcare_conf_post10
aut_preconf_handleIntegerRecommendedHow confident are you that you can handle (physically and/or emotionally) physical examinations, medical tests, or procedures?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_handle
aut_preconf_takepartIntegerRecommendedHow confident are you that you can take part in healthcare decisions?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_decisions
aut_preconf_makeitthruIntegerRecommendedHow confident are you that you can make it through a healthcare visit without a melt-down, shut-down, or severe anxiety?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_makeitthru
aut_preconf_medicationsIntegerRecommendedHow confident are you that you can take medications the way you are supposed to take them?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_medication
aut_preconf_followupIntegerRecommendedHow 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)?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_followup
aut_preconf_healthyIntegerRecommendedHow 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.0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confident
aut_preconf_healthconIntegerRecommendedHow confident are you that you can do what is needed to take care of your health conditions (if you have any)?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_healthcons
aut_preconf_uproleIntegerRecommendedHow confident are you that your provider will understand the role you want your supporter to play in your healthcare, if applicable?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confident
aut_preconf_changeIntegerRecommendedHow confident are you that you can change healthcare providers if you want to?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_change
aut_preconf_privateIntegerRecommendedHow confident are you that you can advocate or speak up for yourself?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_reliable
aut_preconf_reliableinfoIntegerRecommendedHow confident are you that you can find reliable sources of information about your health and health conditions?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentaut_postconf_private
bring_to_appointmentIntegerRecommendedI brought everything I needed with me to the appointment, including anything that I was asked to bring or wanted to bring.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
important_topicsIntegerRecommendedI came prepared with a list of the most important topics I wanted to discuss.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayvisit_preparedness2
describe_symptomsIntegerRecommendedI was ready to describe my symptoms or concerns.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayvisit_preparedness3
answer_questionsIntegerRecommendedI was prepared to answer my primary care provider's questions.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayvisit_preparedness4
expect_appointmentIntegerRecommendedI knew what to expect from my appointment.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayvisit_preparedness5
expect_providerIntegerRecommendedI knew what to expect from my primary care provider.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayvisit_preparedness6
acc_aptIntegerRecommendedMy clinic makes the accommodations I need to set and keep appointments.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
acc_waitIntegerRecommendedMy clinic makes the accommodations I need to handle the waiting room.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
acc_calmIntegerRecommendedMy providers and their staff make the accommodations I need to stay calm and comfortable during a visit.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
acc_comIntegerRecommendedMy providers and their staff make the accommodations I need to communicate what I wish to say.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaccommodations4, supacc_com
acc_understandIntegerRecommendedMy providers and their staff make the accommodations I need to understand what they are saying.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaccommodations5, supacc_understand
acc_examsIntegerRecommendedMy providers and their staff make the accommodations I need to handle examinations or procedures.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to saysupacc_exam
acc_decisionIntegerRecommendedMy providers and their staff make the accommodations I need to take part in my own healthcare decisions.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaccommodations7, supacc_decide
acc_fuIntegerRecommendedMy providers and their staff make the accommodations I need to follow their recommendations and plans.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaccommodations8, supacc_fu
acc_getString255RecommendedWhat healthcare accommodations, if any, do you get?accommodations9, supacc_get
acc_needString255RecommendedWhat additional healthcare accommodations, if any, would you like to get in the future (that you don't get now)?accommodations10, supacc_need
pr_knowhop5String100RecommendedIs there anything else that you would like to tell us?c_tell_researchers
used_tkIntegerRecommendedHave you ever used the AASPIRE Healthcare Toolkit?0;10= No; 1= Yessup_usedtk, toolkit_control1, toolkit_use_control1
basic_information0IntegerRecommendedHave you seen your primary care provider since you started this study? (about 6 months ago)?0::40 = Yes; 1 = No, but I scheduled a visit to go see my primary care provider; 2 = No, and I have not scheduled a visit; 3 = I do not know; 4 = I do not wish to say
basic_information1IntegerRecommendedHave you changed primary care providers since you started this study (about 6 months ago)?0::30 = Yes; 1 = No; 2 = Do not know; 3 = Do not wish to say
basic_information2IntegerRecommendedHave you switched to a different primary care clinic since you started this study (about 6 months ago)?0::30 = Yes; 1 = No; 2 = Do not know; 3 = Do not wish to say
healthcare_use199String255RecommendedDuring 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.
vis2IntegerRecommendedIn the past 6 months, how many different visits have you made to a hospital emergency room or an urgent care facility?healthcare_use2
healthcare_use4IntegerRecommendedWithin the past 3 years, have you had a pelvic exam and/or Pap smear?0;10= No; 1= Yes
healthcare_conf_post8IntegerRecommendedHow confident are you that you can understand what your healthcare provider says about your health?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confident
aut_postconf_healthyIntegerRecommendedHow 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.0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confident
healthcare_conf_post18IntegerRecommendedHow confident are you that you can get your provider to understand the role you want your supporter to play in your healthcare, if applicable?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confident
visit_preparedness1IntegerRecommendedI brought everything I needed with me to the appointment.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
aut_posteval_deviceIntegerRecommendedWhen you used the Healthcare Toolkit, which type of device did you use most?0::30 = 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_posteval_devicefString255RecommendedWhen you used the Healthcare Toolkit, which type of device did you use most? Other, Specify
aut_posteval_browserIntegerRecommendedWhen you used the Healthcare Toolkit, which web browser did you use most?0::60 = Chrome; 1 = FireFox; 2 = Internet Explorer version 9 or higher; 3 = Internet Explorer version 8 or lower; 4 = Safari; 5 = Opera; 6 = Other
aut_posteval_browserfString255RecommendedWhen you used the Healthcare Toolkit, which web browser did you use most? Other, Specify
aut_posteval_easyIntegerRecommendedHow easy was it to use the Healthcare Toolkit web site (with help if needed)?0::40 = Very easy; 1 = Somewhat easy; 2 = Somewhat hard; 3 = Very hard; 4 = Do not wish to say
toolkit_eval_post4IntegerRecommendedHow much of the information in the Healthcare Toolkit was easy to understand (with help if needed)?0::40 = Less than half; 1 = About half; 2 = Most; 3 = All or almost all; 4 = Do not wish to say
toolkit_eval_post5IntegerRecommendedHow important is the information in the Healthcare Toolkit?0::30 = Not important; 1 = Kind of important; 2 = Very important; 3 = Do not wish to say
toolkit_eval_post6IntegerRecommendedHow useful was the information in the Healthcare Toolkit?0::30 = Very useful; 1 = Somewhat useful; 2 = Not useful; 3 = Do not wish to say
toolkit_eval_post7IntegerRecommendedWould you recommend the Healthcare Toolkit to a friend?0;10= No; 1= Yes
toolkit_eval_post8IntegerRecommendedWould you recommend the Healthcare Toolkit to healthcare providers?0;10= No; 1= Yes
aut_posteval_likebestString255RecommendedWhat did you like best about the Healthcare Toolkit?
aut_posteval_likeleastString255RecommendedWhat did you like least about the Healthcare Toolkit?
aut_posteval_mostusefulString255RecommendedWhat did you find most useful about the Healthcare Toolkit?
toolkit_eval_post12String255RecommendedDo you have any suggestions for how we can improve the Healthcare Toolkit?
aut_posteval_howuseString255RecommendedHow did you use the Healthcare Toolkit materials or strategies when you saw your healthcare provider?
how_visit_wentString255RecommendedHow 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_posteval_permissionIntegerRecommendedDid 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;10= No; 1= Yes
aut_posteval_gooverIntegerRecommendedDid you go over the accommodations report with your healthcare provider?0;10= No; 1= Yes
aut_posteval_effectIntegerRecommendedWhat 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_posteval_makechangesString255RecommendedDo 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_posteval_howimproveString255RecommendedDo you have any suggestions for how we can improve the accommodations report?
end_post0IntegerRecommendedHow 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::30 = None; 1 = Someone helped me a little bit.; 2 = Someone helped me a lot.; 3 = Do not wish to say.end0
end_post10String255RecommendedWhat kind of help, if any, did you get while you were taking part in this study? (Check all that apply).
comments_miscString4,000RecommendedMiscellaneous comments on study, interview, methodology relevant to this form data
suppre_suptype5String255RecommendedWhich of the following describes your relationship to the patient you are supporting? (Check all)
sup_prepers_assistIntegerRecommendedDo they need assistance from someone to get medical or dental care?0::30 = Always or often; 1 = Sometimes; 2 = Rarely or never; 3 = Do not know / Do not wish to say
sup_prepers_commIntegerRecommendedThink about the patient's office visits with doctors, nurses, or other healthcare professionals. Do they usually talk with the healthcare providers or do they usually communicate in other ways? For example, do they usually sign, use pictures, use an interpreter, or use a speech device to communicate with them?0::30 = Talk; 1 = Something else; 2 = N/A (For example, they don't communicate with healthcare providers at all); 3 = Do not wish to say
sup_prepers_officeIntegerRecommendedThink about the patient's office visits. How much help do they get from their supporters to communicate with providers?0::30 = They mostly communicate with providers themselves; 1 = They mostly communicate with providers theymselves, but someone helps them some of the time; 2 = Someone else does most or all of the communication; 3 = Do not wish to say
sup_prepers_chronicIntegerRecommendedHave they been told by a doctor or other health professional that they 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;10= No; 1= Yes
sup_prepers_mentalhealthIntegerRecommendedHave they been told by a doctor or other health professional that they have a mental health condition (not including Autism Spectrum Disorders). Some examples are depression, anxiety, or post-traumatic stress disorder (PTSD), schizophrenia, and bipolar disorder.0;10= No; 1= Yes
supsat_askIntegerRecommendedThe patient's primary care provider gave us the chance to ask all the health related questions we had.0::30 = Always or often; 1 = Sometimes; 2 = Rarely or never; 3 = Do not know / Do not wish to say
supsat_uncertainIntegerRecommendedThe patient's primary care provider helped us deal with feelings of uncertainty about the patient's health or healthcare.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
supsat_trustIntegerRecommendedWe felt that we could trust the patient's primary care provider to take care of the patient's healthcare needs.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
sup_prebarrier_goodhc99String255RecommendedWhich of the following barriers keep the patient from receiving good healthcare? Please only mark barriers that actually get in the way of getting health care. (Select all that apply.)
sup_huse_noreceive99String255RecommendedDuring the past 6 months, was there a time when you or the patient felt that they needed one or more following types of healthcare, but did not receive it? Check all the types of healthcare you felt they needed but did not get.
sup_huse_erIntegerRecommendedDuring the past 6 months, how many times did they go to a hospital emergency room about their own health? (This includes emergency room visits that did or did not result in a hospital admission.)0::40 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to say
sup_huse_drofficeIntegerRecommendedDuring the past 6 months, how many times did the patient see a doctor or other healthcare professional about their own health at a doctor's office, a clinic, or some other place?0::40 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to saysup_post_huse3
sup_huse_pelvicIntegerRecommendedWithin the past 3 years, has the patient had a pelvic exam and/or pap smear?0::40 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to saysup_post_huse4
sup_huse_bpressureIntegerRecommendedWithin the past 2 years, has the patient had their blood pressure checked?0::40 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to say
sup_huse_tetanusIntegerRecommendedWithin the past 10 years, has the patient a tetanus vaccine?0::40 = 0 times; 1 = 1 time; 2 = 2-3 times; 3 = 4 or more times; 4 = Do not wish to say
sup_preconf_appIntegerRecommendedHow confident are you that you can make an appointment for the patient with their healthcare provider when needed?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_app
sup_preconf_scheduleIntegerRecommendedHow confident are you that they can make it to a scheduled healthcare appointment?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_schedule
sup_preconf_needIntegerRecommendedHow confident are you that you or the patient can bring what is needed to a healthcare visit?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_need
sup_preconf_prepIntegerRecommendedHow confident are you that you and the patient can feel prepared at a healthcare visit?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_prep
sup_preconf_accomIntegerRecommendedHow confident are you that you can get the accommodations the patient needs for a successful healthcare visit?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_accom
sup_preconf_symptomIntegerRecommendedHow confident are you that you or the patient can describe their symptoms or healthcare concerns to the provider?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_symptom
sup_preconf_answerIntegerRecommendedHow confident are you that you or the patient can answer the healthcare provider's questions?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_answer
sup_preconf_understandIntegerRecommendedHow confident are you that you or the patient can understand what the healthcare provider says about the patient's health?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_understand
sup_preconf_commIntegerRecommendedHow confident are you that you and the patient can communicate effectively with the healthcare provider?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_comm
sup_preconf_openIntegerRecommendedHow confident are you that you or the patient can be open with the healthcare provider about your feelings or concerns?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_open
sup_preconf_physexamIntegerRecommendedHow confident are you that the patient can handle (physically and/or emotionally) physical examinations, medical tests, or procedures?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_physexam
sup_preconf_includedIntegerRecommendedHow confident are you that the patient is being included in healthcare decisions as much as possible?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_included
sup_preconf_takepartIntegerRecommendedHow confident are you that you can take part in healthcare decisions about the patient?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_takepart
sup_preconf_meltdownIntegerRecommendedHow confident are you that the patient can make it through a healthcare visit without a melt-down, shut-down, or severe anxiety?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_meltdown
sup_preconf_medsIntegerRecommendedHow confident are you that the patient can take medications the way they are prescribed?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_meds
sup_preconf_fllwupIntegerRecommendedHow confident are you that you or the patient 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)?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_fllwup
sup_preconf_healthyposIntegerRecommendedHow confident are you that the patient can do what is needed to be as healthy as possible? For example, eat a healthy diet, exercise, relax, or brush their teeth.0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_healthypos
sup_pre_confidence18IntegerRecommendedHow confident are you that you or the patient can do what is needed to take care of their health conditions (if they have any)?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confident
sup_preconf_roleplayIntegerRecommendedHow confident are you that the provider will understand the role you play in the healthcare of the patient you support?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_roleplay
sup_preconf_changeprovIntegerRecommendedHow confident are you that the patient can change healthcare providers if wanted?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_changeprov
sup_preconf_privateIntegerRecommendedHow confident are you that you and the patient can advocate or speak up for yourselves?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_private
sup_preconf_infoIntegerRecommendedHow confident are you that you and the patient can find reliable sources of information about their health and health conditions?0::90 = 1 Not at all confident; 2 = 3; 3 = 4; 4 = 5; 5 = 6; 6 = 7; 7 = 8; 8 = 9; 9 = 10 Totally confidentsup_postconf_info
supprep_broughtIntegerRecommendedWe brought everything we needed with us to the appointment.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
supprep_topicsIntegerRecommendedWe came prepared with a list of the most important topics we wanted to discuss.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
supprep_symptomsIntegerRecommendedWe were ready to describe their symptoms or concerns.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
supprep_answerIntegerRecommendedWe were prepared to answer their primary care provider's questions.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
supprep_expectapptIntegerRecommendedWe knew what to expect from their appointment.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
supprep_expectpvIntegerRecommendedWe knew what to expect from their primary care provider.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
supacc_apptIntegerRecommendedThe patient's clinic makes the accommodations the patient needs to make and keep appointments.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaccommodations1
supacc_waitIntegerRecommendedThe patient's clinic makes the accommodations the patient needs to tolerate the waiting room.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaccommodations2
supacc_calmIntegerRecommendedThe patient's providers and their staff make the accommodations the patient needs to stay calm and comfortable during a visit.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to sayaccommodations3
sup_pronounIntegerRecommendedThe 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::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
satisfaction1IntegerRecommendedThe patient's primary care provider gave us the chance to ask all the health related questions you had.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
satisfaction2IntegerRecommendedThe patient's primary care provider gave us the attention the patient needed to their feelings and emotions.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to saysupsat_feel
satisfaction3IntegerRecommendedThe patient's primary care provider involved us in decisions about the patient's healthcare as much as we wanted.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to saysupsat_decide
satisfaction4IntegerRecommendedThe patient's primary care provider made sure we understood the things we needed to do to take care of the patient's health.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to saysupsat_understand
satisfaction5IntegerRecommendedThe patient's primary care provider helped us deal with feelings of uncertainty about the patient's health or healthcare.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
satisfaction6IntegerRecommendedThe patient's primary care provider understood what we were trying to communicate.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to saysupsat_com
satisfaction7IntegerRecommendedThe patient's primary care provider communicated in a way that we could understand.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to saysupsat_compv
satisfaction8IntegerRecommendedWe felt we could trust the patient's primary care provider to take care of the patient's healthcare needs.0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to say
satisfaction9IntegerRecommendedOverall, how would you rate the quality of healthcare the patient received from their primary care provider?0::50 = Strongly Agree; 1 = Agree; 2 = Neither Agree Nor Disagree; 3 = Disagree; 4 = Strongly Disagree; 5 = Do not wish to saysupsat_rate
version_formString100RecommendedForm used/assessment name
Data Structure

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Distribution for DataStructure: aaspire01 and Element:
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