Questionnaire Screenings: A Guide for Patients

What is a Questionnaire?

A questionnaire is a form with questions that healthcare professionals use to ask you about your health. Someone from your healthcare team may ask you questions out loud, and other times they ask you to write down your answers. Questionnaire screenings can help them find out if you need more support for health problems that may be difficult to talk about, like

• Feeling worried or sad,
• Using drugs or alcohol,
• Someone hurting you, and
• Sexual activity.

These are sensitive topics. Sensitive topics are private and personal. Talking about them can bring up strong feelings, like sadness, worry, anger, or embarrassment. It is important that your healthcare team respects your needs and choices about what kinds of questions you are comfortable answering.

You have the choice:

• To ask for more information
• To say no to a questionnaire or a specific question
• To do the questionnaire later
• To ask for accommodations

Open Path Collective is a nonprofit that connects people with therapists offering reduced-fee, sliding-scale sessions, both online and in person. Visit openpathcollective.org to learn more. You can also search online for telehealth therapy services, or search “therapist near me” plus your city to find someone to see in person.

Finding Mental Health Treatment

Your doctor can refer you to a therapist (a professional who can talk to you and help you cope with difficult emotions) or to a psychiatrist (a doctor who can prescribe medication for mental health conditions). You can also look for a therapist on your own. You do not have to wait for a referral.

Common Questionnaires

You can ask your healthcare team to show you a questionnaire before you fill it out, or you can follow the links below to find these questionnaires online before your appointment. Knowing what to expect can help you feel ready.

Some questionnaires are written at a reading level that is too high for many adults. You have the right to ask for help understanding them.

Some questionnaires have special versions made for people with Intellectual and Developmental Disabilities (IDD) that your healthcare provider may not know about. You can share this information with them.

Depression

Depression is more than feeling sad. It means feeling down, hopeless, or losing interest in things you usually enjoy, most of the day, for two weeks or more.

Standard questionnaires that check for depression:

• The PHQ-9 (Patient Health Questionnaire) has 9 questions and asks how often, in the past two weeks, you have felt down, sad, or hopeless, or had little interest in things you enjoy.
• The PHQ-2 is a shorter version that just asks you the first two questions of the PHQ-9.

You can read the PHQ-9 by visiting tinyurl.com/phq-9d.

Questionnaires made for people with IDD:

• For an adapted version of the PHQ-9 made for and tested with people with intellectual and developmental disabilities, visit tinyurl.com/er-phq-gad. Note that you will need to create a free account on the Easy Health website to access the PDF.
• The GDS-LD (Glasgow Depression Scale for people with a Learning Disability) was made for and tested with people with IDD. To read it, visit tinyurl.com/gds-ld. The questionnaire opens as a PDF.

Anxiety

Anxiety is when worry, fear, or nervousness is very strong, happens most days, and makes daily life harder. Everyone feels nervous sometimes. Anxiety is when those feelings do not go away, even when nothing is wrong.

Standard questionnaires that check for anxiety:

• The GAD-7 stands for Generalized Anxiety Disorder questionnaire. It asks how often, in the past two weeks, you have felt nervous, worried, or on edge. It has 7 questions.
• The GAD-2 is a shorter version. It is the first 2 questions of the GAD-7. Your healthcare team may start with the GAD-2 and only give you the GAD-7 if needed.

To read the GAD-7, visit tinyurl.com/anx-gad. The questionnaire will open as a PDF.

Questionnaires made for people with IDD:

• For an adapted version of the GAD-7 made for and tested with people with intellectual and developmental disabilities, visit tinyurl.com/er-phq-gad. Note that you will need to create a free account on the Easy Health website to access the PDF.
• The GAS-ID (Glasgow Anxiety Scale for people with an Intellectual Disability) was made for and tested with people with IDD. To read it, visit tinyurl.com/gas-id. The questionnaire will open as a PDF.

Alcohol Use Disorder

Alcohol Use Disorder is when drinking alcohol harms your health, safety, relationships, or daily life. Healthcare providers often call this “unhealthy alcohol use.”

Standard questionnaires that check for Alcohol Use Disorder:

• The AUDIT-C stands for Alcohol Use Disorders Identification Test - Concise. It asks how often you drink alcohol, how many drinks you have on a typical day, and how often you have 6 or more drinks at one time. It has 3 questions.
• If you screen positive on the AUDIT-C, your healthcare team may ask you to complete the full AUDIT. It has 10 questions.

To read the full AUDIT, visit tinyurl.com/full-aud. The AUDIT-C just asks the questions #1–3 on this list.

Drug Abuse

Drug abuse is when using drugs harms your health, safety, or daily life. This includes street drugs and also prescription medicines used in a way your provider did not prescribe.

Standard questionnaires that check for drug abuse:

• The TAPS-1 stands for Tobacco, Alcohol, Prescription medication, and other Substance use. It asks how often, in the past 12 months, you used tobacco, had four or more (for women) or five or more (for men) alcoholic drinks in one day, used a prescription medicine in a way that was not prescribed, or used any other drugs. It has 4 questions.
• If you screen positive on the TAPS-1, your healthcare team may ask you to complete the TAPS-2. It asks a few more questions about only the substances you said yes to. It has up to 9 more questions.

To read the TAPS-1 and TAPS-2, visit nida.nih.gov/taps2. The tool will open on the National Institute on Drug Abuse (NIDA) website.

Intimate Partner Violence

Intimate partner violence is when a partner — like a spouse, boyfriend, girlfriend, or someone you date — hurts, scares, controls, or threatens you. Abuse can be physical, sexual, or emotional, or about money. It is never your fault.

Healthcare providers screen women of reproductive age for intimate partner violence at routine visits. Reproductive age for women means age 15-44 — the age most women are able to have children. If you are asked, it is because everyone your age is asked, not because of anything about you.

Many people with disabilities who are being hurt say that no healthcare provider ever asked them about it. You do not have to wait to be asked. You can bring it up yourself at any visit.

Standard questionnaires that check for intimate partner violence:

• The HITS questionnaire (Hurt, Insult, Threaten, Scream) asks how often a partner does each of those things. It has 4 questions.
• The HARK questionnaire (Humiliation, Afraid, Rape, Kick) asks yes-or-no questions about the past year. It has 4 questions.

To read the HITS questionnaire, visit tinyurl.com/hits-ipv. The questionnaire will open as a PDF.

To read the HARK questionnaire, visit tinyurl.com/ipv-hark. The link will open a website.

Questionnaires made for people with disabilities:

The AAS-D (Abuse Assessment Screen – Disability) was made for women with disabilities. It adds questions about being hurt or controlled by caregivers or healthcare providers, for example, someone withholding your equipment or refusing to help you with a physical need. To read the questions, visit tinyurl.com/aas-dq. They are published inside a journal article, which will open as a PDF. The questionnaire is on page 4.

Questions about Your Sexual Activity

Your healthcare provider may occasionally ask you questions about your sexual activity. This is called a sexual history. There is no standard questionnaire that healthcare providers use for this. These questions usually come up as part of a conversation during your appointment. Your answers help your healthcare provider decide if you should be tested for sexually transmitted infections (STIs).

STIs are infections that can pass from one person to another during sex or close sexual contact. Many STIs cause no symptoms, so testing is the only way to know for sure. Most STI tests use a urine sample or a blood test.

Your provider may ask questions like:

• “Have you ever had sex? Are you having sex now?”
• “Are your sexual partners men, women, or both?”
• “What kinds of sex do you have — oral, vaginal, or anal?” This matters because different kinds of sex need different tests.
• “Do you use condoms or other protection?”
• “Have you had an STI before?”
• “Could you become pregnant? Do you want to?”

What you should know about these questions:

• Healthcare providers ask everyone these questions, no matter their age or disability. If you are asked, it is not because of anything about you.
• They should explain why they are asking and use words you understand. You can say: “Please explain what that means.” Unlike the questionnaires above, these questions have no official wording. Your healthcare provider can put them in different words for you.
• They should explain what they mean by words like “sex” or “sexually active.” You can ask them to be specific.
• You can ask to talk privately. You can ask a support person or family member to step out, or to stay. It is your choice.
• You can skip a question or say no. But honest answers help your healthcare provider order the right tests.

Accommodations for Questionnaires

Accommodations are changes or supports that help you complete a questionnaire. Reasonable accommodations must be provided at no cost to you.

You have the right to ask for communication support that works for you. Three laws protect this right: the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. To read more about the laws that protect these accommodations, see the Sources section of this document.

When you ask for a specific accommodation, the law is on your side. Healthcare providers must seriously consider what you asked for. They cannot just offer whatever is easiest for them.

Here are some accommodations you can ask for when doing a questionnaire screening:

General Accommodations

• Extra time, or breaks between questions
• A quiet or private room
• A support person with you
• Taking the questionnaire home and finishing it later

Accommodations For Reading and Understanding Questions

• Large print, braille, or an electronic copy
• Someone to read the questions out loud
• Help understanding what a question means

Accommodations for Answering Questions

• Answering in writing instead of out loud
• Cards or pictures that show the answer choices, so you can point to your answer
• A practice question first, so you can see how the answers work before you start
• A simpler set of answer choices (for example, “yes / sometimes / no” instead of a longer rating scale.)
• Writing ‘N/A’ (does not apply) for questions that do not fit you

What to Do If You Cannot Understand a Question

Healthcare providers try to keep the official wording of a question, because the questions were tested with those exact words.

You can ask what a word means. Some questionnaires even tell providers to explain certain words.

If a question is still confusing, your healthcare provider can put it into simpler words for you. Experts recommend this when someone does not understand a question. If a question about time is confusing (like “in the past two weeks”), you can ask them to connect it to something in your life instead — for example, “since your birthday” or “around a holiday.” When your provider changes the wording, they should write down what they changed and use your answers as part of a conversation about what you meant.

If you have an intellectual or developmental disability, you can ask, “Is there a version of this questionnaire for people with IDD?”

Scripts to Ask for Accommodations, Support, or to Talk Differently

If you need a different format that works better for you, you can say…

“I need a different format to complete this. What accommodations are available?”

For example, you might ask for:

• Larger print
• More time or breaks between questions
• Braille
• Read out loud
• Electronic or paper copy

If you want an adapted version made for people with IDD, you can ask…

“Is there a version of this made for people with IDD?”

If you want someone to support you, you can ask…

“Some of these questions are difficult for me. May my supporter stay with me during the questionnaire?”

If you want more privacy, you can ask…

“Some of these questions are difficult for me. May I have a more private space to finish the questionnaire?”

“May we talk privately? I would like [person] to step out.”

If you need more time, you can say…

“I need more time to complete this.”

“I need to take breaks between questions.”

If you want to do the questionnaire later, you can ask…

“May I take this home and finish it before my next visit?”

“May I wait to do the questionnaire at my next visit?”

If you would rather share in your own words, you can say…

“I do not feel comfortable answering these questions in a form. May I discuss these with [my healthcare provider] instead?”

What Happens With Your Answers

What Happens to the Information You Share

By law, your health information is private. A federal law called HIPAA protects it. HIPAA stands for the Health Insurance Portability and Accountability Act, and it sets rules about who can see your health information and how it can be shared. Here is what you should know:

• Your answers, including those about drugs, alcohol, and mental health, go into your medical record. Any other healthcare providers who treat you later may see them. It is okay to share only what you feel comfortable sharing.
• If you have Medicaid, some screening information may be shared with state health agencies.
• Your healthcare provider can share your information with people who help with your care or billing, like a therapist they refer you to, or your insurance company, without asking you first.
• Your healthcare provider needs your written permission for sharing your information with anyone else.

You can learn more about your health privacy rights by visiting tinyurl.com/hipaa-i.

Mandatory Reporting Laws: Safety Concerns Healthcare Professionals Must Report

Healthcare professionals might be required to share your private information if they have a strong reason to believe someone — including you — might get seriously hurt, or if someone is being abused or neglected. The law requires them to report serious situations like this to the police or state protection agencies. This is called mandatory reporting. Here are some situations where they might report what you share with them:

Immediate danger

If your healthcare professional thinks you are in immediate danger, meaning you might hurt yourself or someone else, they may report it. In some states, this can lead to a safety check or an emergency mental health evaluation, and sometimes police are involved.

• A safety check (sometimes called a wellness check) is when police or other responders are sent to your home to check that you are safe.
• An emergency mental health evaluation is when a professional checks whether you need help right away to stay safe. In some states, this can include being taken to a hospital, even if you do not agree. This does not happen to most people, but it is real, and you deserve to know about it before you answer.

Intimate partner violence

Depending on where you live, healthcare professionals may have to report it to the police, especially if there are serious injuries (like from a gun or a knife).

Child abuse

If children are being hurt, it may be reported to the police or state child protection agency.

Elder abuse

Elder abuse is when someone is hurting, neglecting, or taking advantage of an older adult (usually age 60 or older). It also includes taking their money. Healthcare professionals may report suspected elder abuse to Adult Protective Services.

You Should Know

When something is reported, it can become part of medical, state, or court records. Some records can stay with you for the rest of your life.

Before you answer any question, you can ask: “Could my answers lead to a report or a follow-up?” or “How do you handle it when someone shares thoughts of hurting themselves?”

These are the rules, but no system is perfect. If a data leak happens or a healthcare provider does not follow the rules, it is still possible others could see your information.

You deserve support if you are struggling. The goal of this guide is to keep you informed, not to make you afraid to ask for help. Knowing these rules before you answer helps you decide what to share and stay in control.

A Note About Healthcare Providers’ Use of Artificial Intelligence (AI)

Some healthcare offices use artificial intelligence (AI) tools that may record your conversation during a visit. These tools can add privacy risks, like data leaks.

You can ask: “Do you use AI tools during visits or with my forms? How is my information protected?” You can say no to an AI tool recording your visit.

Scripts to Ask What Happens With Your Answers

If you want to know who will see your answers, you can say…

“I need to know who this form could be shared with before I would be comfortable answering these questions.”

If you want to know how the office keeps your information private, you can ask…

“What does your office do to keep my information private?”

If you want to know how the office handles safety concerns and mandatory reporting, you can ask…

“Before I answer questions about [drugs/abuse], can you tell me

• what stays private,
• what is shared for my care and billing, and
• what you would have to report?”

“How do you handle it when someone shares thoughts of hurting themselves?”

If you want to know what could happen because of an answer, you can ask…

“Could any of my answers lead to a report or a follow-up? What happens then?”

If you want to know what goes in your records, and how to see them, you can ask…

“What will be written down?”

“Who will see my answers?”

“How can I see my own records?”

If you are referred to a new healthcare professional, you can say…

“What information will you send them? Please only share what is needed.”

If you want to know whether AI tools record your visit, you can ask…

“Do you use AI tools during visits or with my forms?”

“I do not want an AI tool to record my visit.”

When Healthcare Professionals Do Questionnaires Correctly

If your healthcare team is prepared to work with you and provide any accommodations you need, these kinds of screenings should help you feel supported.

Here is what a good questionnaire screening should look like, and what actions you can take to make this screening work for you.

Before the Questionnaire Begins

Your healthcare provider explains:

• The purpose of the questionnaire
• What they will do with the results
• What stays private and what may have to be reported

Then they:

• Ask for your consent to do the questionnaire. Informed consent means saying yes because you understand and agree, not because you feel forced. Saying no is just as okay as saying yes.
• They allow you to ask questions about the questionnaire. This is also part of informed consent.
• They tell you what topics they must report, if you talk about them.
• Offer you the option to not do the questionnaire. They respect your choice if you say no.
• Ask if there are any accommodations you need to complete the questionnaire. They provide the questionnaire in a format that works for you.

To read the American Medical Association’s rule on informed consent, visit tinyurl.com/in-consent. It will open as a webpage.

During the Questionnaire

• Your healthcare provider lets you communicate in your own way. You can use your own words, a device, pictures, or a support person. There is no one ‘right’ way to communicate.
• They use plain, non-judgmental language and check for understanding.
• They remind you there are no right or wrong answers, and they do not push you to change an answer (for example, by asking “Are you sure?”).
• They give you enough time and do not rush you.
• They repeat back what they heard to make sure they understood you, and you can correct them if they got it wrong.
• They talk to you directly, not only to your support person or interpreter.
• They know that it is okay to say ‘I do not know.’ Saying, ‘I do not know’ helps your healthcare provider more than trying to pick an answer that does not fit.

After the Questionnaire

• Your healthcare provider goes over the results with you in plain, non-judgmental language and explains what happens next.
• Together, you develop a follow-up plan based on the results if needed. Your healthcare provider might refer you to a new specialist or organization for more support. You can ask, “Do they have experience working with people with disabilities?”
• Accommodations apply after the questionnaire too. You can ask for your results explained in plain language, written down to take home, or shared in the format that works best for you.
• A questionnaire result is not a diagnosis. It is a signal that helps you and your provider decide what to talk about next. If someone suggests a new medicine based only on a score, you can ask for a fuller conversation or evaluation first.

Scripts You Can Use

Before You Begin Answering the Questionnaire

Stop and communicate if…

• You have any questions about how your information will be used.
• You realize no one has explained what the screening is for.
• Your healthcare provider pressures you to complete a questionnaire when you have already said no.
• You did the same screening recently and do not wish to answer it again.
• You need the questionnaire in a different format (some examples: large print, written, spoken). By law, your healthcare provider cannot bill you for requesting a questionnaire in an accessible format.

Before You Answer Sensitive Questions, Ask…

You may want to ask questions about what will happen with a questionnaire before you begin answering it. You can start by saying:

“Before I fill out this questionnaire, I have some questions.”

Here are some other questions you might choose to ask. You do not have to ask all of them. Pick the ones that are most important to you.

Scripts to Ask About the Questions

If you want to know what a questionnaire (or a specific question) is for, you can say…

“I do not understand why I am being asked this. How will my information be used?”

“Why are you asking me this?”

If you do not understand a word, you can say…

“Please explain what [that word] means.”

Scripts to Ask About Your Results

If you want to understand what your results mean, you can ask…

Before a screening:

“After I am done, can we talk about what the results mean and what support is available?”

“What happens with my results?”

After a screening:

“I want to talk about my past screening results. What did they show and what was done because of them?”

If you want to know why you are being screened again, you can ask…

“I did this screening recently, so why do I need to do it again?”

If you want help understanding your results afterward, you can say…

“Please explain my results in plain language. Can you write down the main points for me?”

If you are given a referral to a new healthcare professional, you can ask…

“Does that specialist have experience working with disabled people?”

You Can Always Say No

It is okay to say no. You can say no to some questions and answer others. You can skip a question or leave it blank. You can stop partway through, even if someone is asking the questions out loud. And you can say no to the whole questionnaire. Saying no should not change the quality of your care.

If someone treats you unfairly because you said no, see When Healthcare Professionals Do Not Respect Your Rights near the end of this guide.

Scripts for Saying No

If you are already getting support for this, you can say…

“I am already receiving support for this from a [therapist / counselor / advocate / psychiatrist]. Why are you asking me to take the questionnaire?”

If you do not want to do a questionnaire, for any reason, you can say…

“I have decided not to complete this screening today.”

If you are told it is required or are pressured, you can say…

“I understand you ask everyone. It is my choice. I do not want to do this one today.”

If they keep asking, you can say…

“You have asked more than once. My answer is still no.”

If you want to skip one question or stop partway, you can say…

“I will skip this question.”

“I want to stop here.”

When Healthcare Professionals Do Not Respect Your Rights

If a healthcare professional ignores your “no,” refuses an accommodation, or treats you unfairly, here is what you can do:

• Write down what happened, the date, time, staff names, and location.
• If you feel comfortable doing so, ask to speak with a supervisor or patient advocate during the visit, or contact patient relations at the healthcare facility after the visit.

State Protection and Advocacy (P&A) agencies can offer legal support and help advocate for your rights. Find your state or territory’s protection and advocacy (P&A) agency by visiting tinyurl.com/findndrn.

If you feel that you have been discriminated against (treated unfairly due to your disability), you can also file a complaint. For healthcare, you can file with either or both:

• The U.S. Department of Health and Human Services, Office for Civil Rights (OCR), which handles disability discrimination by healthcare providers under Section 504 and Section 1557. Visit hhs.gov/ocr complaints.
• The U.S. Department of Justice, under the Americans with Disabilities Act (ADA). Visit ada.gov/file-a-complaint.

If your health information was shared in a way it should not have been, you can file a complaint with: The Office of Civil Rights (OCR). Visit tinyurl.com/ocr-priv for more information.

Want to learn more about your rights? To learn more about your rights under Section 504 and the ADA, including your right to communication support at no cost, visit tinyurl.com/kyr504 for a plain-language fact sheet from the OCR. The link opens as a PDF.

Summary: What You Can Do

• You can ask questions before deciding to do the questionnaire.
• You can ask for accommodations for your disability.
• You can ask what information stays private and what may be reported.
• You can say no to answering questions on any screening questionnaire.
• You can say no to answering an entire screening questionnaire.
• You can stop a screening at any time for any reason.
• You should get explanations about the purpose and results.

Things to Remember

• Finding problems early helps. Mental health conditions, substance use problems, unsafe relationships, and infections are all easier to treat or support when they are found early.
• Your healthcare, your choice. You decide what information to share.
• Past negative experiences may influence how comfortable you feel sharing sensitive information, and that is understandable. Your healthcare provider is responsible for earning your trust. You can ask them questions, and you can wait to share sensitive information until you feel more comfortable.
• Healthcare professionals should respect your questions and work with you.
• You deserve compassionate care that treats you as a whole person, not a bunch of symptoms to treat. You are capable of making decisions about your own health. Healthcare professionals should respect those decisions.

Language Note

In this guide, we use both “people with disabilities” (person-first language) and “disabled people” (identity-first language). We use both because people have different preferences, and both are respectful.

Laws and Regulations

Americans with Disabilities Act (ADA): 42 U.S.C. § 12101 et seq. Effective-communication rules: 28 C.F.R. § 36.303 (private healthcare providers) and 28 C.F.R. § 35.160 (government-run providers). Read a plain-language overview.

Section 504 of the Rehabilitation Act of 1973: 29 U.S.C. § 794. Read the Overview.

Section 1557 of the Affordable Care Act: 42 U.S.C. § 18116; regulations at 45 C.F.R. Part 92 (effective communication, § 92.202).

Health Insurance Portability and Accountability Act (HIPAA): Privacy Rule, 45 C.F.R. Parts 160 and 164.

American Medical Association, Code of Medical Ethics Opinion 2.1.1: Informed Consent (professional ethics guidance).

Quick Scripts

Here are some short scripts for communicating quickly in difficult moments. You can say a phrase out loud, point to it on this page, or show it on your device.

If you have questions or need more information, you can say…

“I have questions first.”

If you need accommodations, you can say…

“I need [accommodation].”

For example, you might ask for:

• Larger print
• More time or breaks between questions
• Braille
• Read out loud
• Electronic or paper copy

If you need to do the questionnaire later, you can say…

“I need to do this at home.”

“I need to do this next time.”

If you do not want to do a questionnaire, you can say…

“I have decided not to do this.”

If you need a moment to think or decide, you can say…

“I need a moment.”

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