[This document is a preview of the full interview guide] Patient

[This document is a preview of the full interview guide]

Patient experience mapping toolbox

interview guide

A note to researchers

This interview guide is a collection of questions aimed at capturing patients’

experiences with [a chronic health condition]. The questions cover a patient’s

experiences from pre-diagnosis, through diagnosis and treatment, up to the

present day.

What is the purpose of this interview guide?

The purpose of this guide is to help researchers engage patients to learn more

about their experiences from before they got a diagnosis through their

experiences living with and treating a health condition. You can use the data

collected during these interviews to better gain a better understanding into

patients’ lived experiences, including, but not limited to their experiences with the

health care system.

How do I use this interview guide?

Use the template questions provided in this interview guide to create a

customized interview guide that fits the specific purpose of your study. You can

tailor the questions to the individual participant, participant group, and health

condition you are studying.

This interview guide is intended to be used with a visual aid “Map My

Experience.” The visual aid is used throughout interviews to help participants

follow along and describe their experience.

Here’s what you should know:

• Instructions for you to follow during interviews, such as prompts to point to the

patient experience map, are in blue font

• You can pick and choose from the questions in this guide to fit your study

objective

• Questions every researcher should ask are marked in bold font. Optional

questions are not bolded.

[This document is a preview of the full interview guide]

Table of Contents

A NOTE TO RESEARCHERS ...................................................................................................................... 1

START THE INTERVIEW ............................................................................................................................. 4

Get to know the participant and help them feel comfortable talking ......................................................... 7

Introduce the “Map My Experience” tool .............................................................................................. 8

Ask about their experiences before getting a diagnosis ......................................................................... 12

Symptoms ........................................................................................................................................... 13

Questions & Information Gathering ...................................................... Error! Bookmark not defined.

Emotional Health & Personal Goals ..................................................... Error! Bookmark not defined.

Life Factors ........................................................................................... Error! Bookmark not defined.

Seeking care ......................................................................................... Error! Bookmark not defined.

Genetic testing ...................................................................................... Error! Bookmark not defined.

Closing before getting a diagnosis ....................................................... Error! Bookmark not defined.

Ask about their experiences getting a diagnosis ...................................... Error! Bookmark not defined.

Transition to getting a diagnosis ........................................................... Error! Bookmark not defined.

Follow-Up Care ..................................................................................... Error! Bookmark not defined.

Changed Diagnosis/Misdiagnosis ........................................................ Error! Bookmark not defined.

Treatments ........................................................................................... Error! Bookmark not defined.

Symptoms ............................................................................................. Error! Bookmark not defined.

Questions & Information Gathering ...................................................... Error! Bookmark not defined.

Emotional Health & Personal Goals ..................................................... Error! Bookmark not defined.

Life Factors ........................................................................................... Error! Bookmark not defined.

Closing before living with a diagnosis .................................................. Error! Bookmark not defined.

Diagnosis prior to or at birth, or as a young child ................................. Error! Bookmark not defined.

Ask about their experiences living with a diagnosis ................................. Error! Bookmark not defined.

Transition to living with a diagnosis ...................................................... Error! Bookmark not defined.

Living with a diagnosis ......................................................................... Error! Bookmark not defined.

Treatment they are currently getting .................................................... Error! Bookmark not defined.

Treatment they have tried but stopped................................................. Error! Bookmark not defined.

Ideal Treatment .................................................................................... Error! Bookmark not defined.

Surgeries and Procedures .................................................................... Error! Bookmark not defined.

Hospitalizations/Urgent Care Visits ...................................................... Error! Bookmark not defined.

Life Factors (Hospitalizations/Urgent Care Visits) ................................ Error! Bookmark not defined.

Clinical Trial Participation ..................................................................... Error! Bookmark not defined.

Life Factors ........................................................................................... Error! Bookmark not defined.

[This document is a preview of the full interview guide]

Care Coordination & Multiple Chronic Conditions ................................ Error! Bookmark not defined.

Wellbeing and burden of disease ......................................................... Error! Bookmark not defined.

Quality Measurement ........................................................................... Error! Bookmark not defined.

Genetic testing ...................................................................................... Error! Bookmark not defined.

Desired Outcomes and Life Aspirations ............................................... Error! Bookmark not defined.

Closing .................................................................................................. Error! Bookmark not defined.

Feedback on Tools ............................................................................... Error! Bookmark not defined.

Conclusion & Post-Interview Logistics ................................................. Error! Bookmark not defined.

[This document is a preview of the full interview guide]

Start the interview

Introduce yourself and explain the interview’s purpose

Hello, my name is [Interviewer]. Thank you for speaking with me today. I am

conducting this interview for [organization name]. This interview will take

about [x time] to complete.

The purpose of this interview is to learn about your experience with

[condition] from the time before you got a diagnosis up until today. I also

will ask for your feedback on the “Map My Experience” picture and on the

questions I’ve asked you during the interview. We will use your feedback

to make the map and the interview questions better for future interviews.

We plan to make the map and the interview questions available to other

researchers so they can understand what it is like to be a patient. As

researchers and health care providers better understand your and other

patients’ experiences, they can develop better treatments and improve the

quality of health care.

• To get started, we will go through the privacy disclosures and I’ll get your

consent to participate. Then, I’ll ask some general questions about you.

After that, I will introduce the “Map My Experience” tool that will help guide

the interview. Lastly, I’ll be asking you a wide range of questions about

your condition. We are interested in your thoughts and opinions. There are

no right or wrong answers. You do not have to answer any questions that

make you feel uncomfortable. Just tell me when there is a question you

prefer to not answer and I will skip to the next question.

This work is funded by [funder]. You will receive payment for your time

participating in this interview. You should expect payment in [XX] days.

[This document is a preview of the full interview guide]

Give privacy disclosures

(Adjust text to fit your study specifics)

Before we start our discussion, let’s talk about privacy of everything you tell us

during this interview.

We will be careful to protect your privacy in these ways:

• All the information you provide will be used for the purpose of this

research project only.

• With your permission, I will be audio-recording this interview. Please

speak loudly and clearly so that all your comments will be captured on the

audio-recording.

• The recording will be kept private. We will use the recording to create a

written version of our discussion to be reviewed later and to take complete

notes.

• Recordings will be stored until the written version has been created and

analyzed.

• We will not associate your name with any of your comments. Instead, you

will be identified with an ID number to protect your identity and

confidentiality.

• When we present study results, we will combine the data from all patients

and present it as group data, not individual responses.

• In some cases, we might want to highlight or quote a statement you made

because it conveys an important point. However, we would never use your

name with any statement.

[This document is a preview of the full interview guide]

Get consent

Before we start, what questions do you have for me?

Answer any questions they have.

Do you agree to take part in this interview?

Wait for response.

If ‘No’:

Okay, I understand you have decided not to take part. What could we

do next time to make it easier for you to take part in an interview?

Write the reason, try to clarify any questions so they might agree to take

part. Thank them for taking the time to speak with you today.

If ‘Yes’:

Thank you for agreeing to take part and be recorded. Also, I wanted

to let you know I may be taking notes throughout the interview as

you will be providing a lot of beneficial information. As a result,

there may be times that I am silent. Please don’t think I am not

listening if that happens.

Ok, I will start recording now. You can skip (or not answer) any

questions you do not feel comfortable answering, and you can stop

the interview at any time.

Start recording.

Check recording is in progress.

[This document is a preview of the full interview guide]

This is participant [ID] and today’s date is [date]. Could you please confirm

once more for me that you agree to be recorded?

Wait for response.

Thank you.

Get to know the participant and help them feel comfortable

talking

To start off, could you please tell me a little about yourself? For example,

do you have any hobbies, do you work, volunteer, or go to school?

Do you have family members that you rely on? Do they live close by? How

about friends or caregivers?

• What part of the country do you live in?

 Could you please describe where you live in a little detail, for

example, do you live in the city, suburbs, a small town, or in a rural

area?

 How convenient is it for you to get to and from [work, grocery store,

school, etc.]?

Choose 1 of the following:

• What other kinds of activities are you or your family members involved in?

• Do you have a set routine or does your schedule vary?

• What takes up most of your time on an average day?

• What is a typical day for you?

• What is a good day for you? What is a bad day for you?

• Variation: What is a perfect day for you?

Capture additional demographic information here as needed.

Great, thank you. Next, I am going to show you and explain a tool that will

help with our interview.

[This document is a preview of the full interview guide]

Introduce the “Map My Experience” tool

For virtual interviews, pull up the “Map My Experience” tool on your

screen.

For in-person interviews, hand a paper copy to the participant.

If virtual:

Let’s look at the screen now. Can you see it okay?

Wait for response.

This is called the “Map My Experience” tool. It’s a tool to help guide

discussions with patients about their experiences to make sure we don’t

forget to talk about important parts of a patient’s journey.

Keep in mind, the purpose of the map is just to help guide our discussion.

We will note the things that you have experienced and be sure to focus on

those during our conversation. As we go through these items, if you have a

question or if something does not make sense, please let me know and we

can talk more to be sure it is clear.

Let’s begin on the left side of the map with a general overview. As you can

see, the map has three islands and has two starting points on the first

island. From there, you can follow two different paths going from island to

island to help you talk about your own patient experience.

I will now be taking a closer look at symbols and icons on each island.

Point to the red icon, “Life Before Getting a Diagnosis”.

The to the left island that is called, “Life Before Getting a Diagnosis,” is

meant to represent your experiences before you got your diagnosis, the

time before a doctor telling you that you have a health condition.

Point to the purple section, “Getting a diagnosis”.

The purple icon on the middle island shows experiences getting a

diagnosis, and

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Point to green section, “Living with a Diagnosis.”

The green icon on the island to right represents your life after your

condition was diagnosed.

Every patient has different experiences, so you might not have experienced

everything on this map. That’s OK. For example, some people get a

diagnosis in 10 minutes, and for others it might take years and many

doctor visits.

Let’s take an in-depth look at the items and symbols on each island.

Point to the lifestyle changes on island 1; then to yogis on islands 2 & 3

The farm stand, no smoking sign, and person doing yoga — are a place to

think about any lifestyle changes you may have made. For example,

perhaps you worked to improve your diet, increased your physical activity,

tried to reduce stress levels, or changed your alcohol habits. Throughout

the interview, I’d like to hear about those changes.

Point to the information booths on each island

The information booths on each island represent getting information —

these booths are a place to think about where you went to get information

about your symptoms, [condition], or side effects from treatments. It could

be from a person, website, online forum, patient community, book, or any

other source of information.

Point to the health care buildings on each island

There are also health care buildings on each island, including those

buildings with the red cross on them that say “clinic” as well as the

pharmacy on the third island. These buildings represent any interaction

you may have had with any health care professional—whether that be at a

hospital, clinic, rehabilitation center, pharmacy, acupuncturist, or another

place you go to for care.

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Point to the dark blue section, “Desired outcomes and life aspirations”.

You can see blue boxes on every island that say “personal goals,” These

correspond to any personal goals you may have or may have had. The dark

blue box at the end of the path that says, “desired outcomes and life

aspirations,” is a place to think about your everyday goals and hopes. This

could include being able to do a hobby, being able to attend an event, or

being able to spend more time with friends and family.

Point to each of the white loops and mountains that diverge from the

main path

The mountains and the loop on the second island represent having a

difficult and/or lengthy time trying to receive a diagnosis. The loop on the

third island represents any bad experiences or outcomes that might have

happened with your treatment or condition. These might help you think

about times in your patient experience when things have been more

difficult. We can talk about those times later during the interview, if you are

comfortable with it.

Point to each of the brown bridges

You will also notice 2 brown colored bridges on the map. These bridges

allow you to go back to the previous island if needed to allow for

any setbacks (for example, a change in diagnosis or if you stopped seeking

a diagnosis).

Specifically, the brown bridge that connects the second and third island

represents a misdiagnosis, a diagnosis that a doctor later changed, and it

put you back on the second island.

Point to “life factors” at the top.

One more thing about the map: At the top of this map, we have a row called

“life factors.” They include:

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• Family and support system

• Work or student life

• Geography, housing, and transportation

• Health care

• Insurance and access to health care

• Mental health and other health conditions

• Finances and other costs

• Ethnicity, age, or gender

As we go through the interview, I’ll ask you about how these life factors are

intertwined with your experience as a person with [condition]. For example,

how your family or support system may be impacted by your condition, but

also how they help you managing [condition].

Does that make sense?

If ‘No,’ give example:

For example, your personal finances might affect your decision to go see a

doctor because a visit can be expensive. It might also affect whether you decide

to start a treatment or not. The same may be true for your family or support

system – they might encourage you to seek care from a certain type of health

care provider or get a certain treatment. This could affect your experiences after

you get a diagnosis. Does this make sense to you?

If ‘No’, give further examples until meaning is clear.

Do you have any questions before we continue?

Answer any questions they have.

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Ask about their experiences before getting a diagnosis

To begin, I’d like to spend a little time learning about your life before you

were diagnosed with [condition]. This may have been a difficult time for

you, and I know it can be hard to share private information. Please share

only what you feel comfortable sharing and let me know if you need to take

a break or stop at any time.

Point to the two starting points on the map.

You’ll notice the map shows 2 possible experiences for starting a patient

journey:

Point to “I or someone close to me noticed something was different or I

didn’t feel right”

Starting Point: Some patients might notice something is wrong, or even

just different, on their own. For example, they notice symptoms and start

doing research at home or make a doctor’s appointment. Additionally,

someone close to them, such as a spouse, a family friend, or maybe an

acquaintance, may have noticed something. It’s also possible you were

diagnosed before or at birth, or as a young child and found out from

someone at some point in your life.*

Point to Path 2, “A health care provider found a problem”

Starting Point: Other patients might have found out about their

condition from a doctor or other health care professional during a visit, or

after lab work or completing a test.

Which of these starting points best fits the beginning of your journey?

If 1

starting point, go to: “I or someone close to me noticed something was

different or I didn’t feel right” section below.

If 2

starting point, go to: “A health care provider found a problem” on page 17.

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*If the participant was diagnosed before or at birth, or as a young child, go to

“Diagnosis prior to or at birth, or as a young child” on page 22.

Symptoms

If Starting

Point 1, start

here

You said you (or someone close to you) noticed something

was different and didn’t feel right. Could you please tell

me more about that?

• What did you notice? What did it feel like?

• How long did the [symptoms] last? How often did they

occur?

• Did the symptoms happen at certain times of the day?

• What were your symptoms like on a good day? Bad day?

Does this affect your daily life on those days? Of all the

symptoms that you experience because of your condition,

which 1-3 symptoms have the most significant impact on

your life? Why is that?

• Did you notice anything “triggered” the symptoms?

o For example: caffeine or sleep loss

• What made the [symptoms] better? What made the

[symptoms] worse?

How did you try to manage your [symptoms]?

• Did you try making any lifestyle changes to help with

symptoms? Could you please describe them for me?

• Did you try any over-the-counter products such as a pain

reliever, herbals, vitamins, or supplements?

• How long did you try to manage your symptoms before

going to see a health care provider?

[This document is a preview of the full interview guide]