Discussion Guide

Before you begin:

● Refer to the Overview document for more details on how to use the discussion guide.
● Reflect on how much time you have for your interview/research session, and provide a timing
breakdown for each section of the guide to keep you on track and make sure you have enough time to
capture all the phases and lenses of the experience.
● Note that “Expert tips” have been added (in blue) throughout the discussion guide, including when
facilitation materials would be helpful to incorporate in the discussion.
○ Refer to the Overview document for more details on the facilitation materials and how to use them.

WARM UP (OPTIONAL)
Purpose: To ease any anxiety the participant may be feeling and to build rapport (to acknowledge
participants as individuals and not just ‘patients’).

Before we get started, can you tell us a bit about yourself?

Additional examples of prompts (best used for 1:1 interviews):

• What is your profession?

• Can you tell me a bit about you and your family?

• What activities or hobbies do you find joy in? (Sports? Food? Volunteering? etc.)

The following sections of the discussion guide go through each phase of the patient
experience.

If you are conducting a group interview, consider having a minute of heads down time for participants to reflect
on their own experience, followed by a short group discussion to identify commonalities and differences in
individual experiences, with a particular emphasis on common emotions, thoughts, and concerns.

An example of how you might facilitate this:

Please take a minute or two to reflect on your own experience. You may find it helpful to jot them down on a
piece of paper. We’ll open up for a group discussion and talk a little about how our experiences were similar or
different. We certainly recognize that everyone experienced this in a different way. Our objective here is to
explore those differences with you all.

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PRE-DIAGNOSIS
Purpose: To gain an understanding of patients’ experiences before receiving a firm diagnosis of [DISEASE].

Example of how to We’d now like to talk about your experience prior to receiving your diagnosis.
introduce this
phase During the discussion, participants may start talking about their experience with [DISEASE].
It is helpful to indicate that you are not diving into the actual diagnosis yet and you can gently
remind them that you will get there, but for now, you want to start by understanding key
moments that occurred prior to receiving their diagnosis of [DISEASE] by an HCP.

For some people, there might not be a lot to say about this phase and that’s okay (e.g., if
they were asymptomatic and found out due to a regular check-up).

MEDICAL LENS Q1a: Can you tell us what happened leading up to your diagnosis?
● Who did you speak with during this time (friends, family, HCPs)?
Facilitator can show participants the RELATIONSHIPS reference sheet as a helpful
prompt.
PHYSICAL LENS Q1b: Did any physical changes occur during this time? Did you experience any
symptoms? When did you start thinking that something wasn’t quite right?
Facilitator can show participants the SYMPTOM FOUR-POINT SCALE as a prompt to
initially capture the presence and severity of symptoms before prompting further discussion.
Note how their symptoms may be connected to what was described in the medical lens.

Q1c: What was your lifestyle prior to your diagnosis? Any hobbies? Did that change
leading up to your diagnosis?

EMOTIONAL LENS Q1d: What were you feeling at this time?

Facilitator can show participants the EMOTIONAL SEVEN-POINT SCALE to capture where
participants fall on the scale.

This can be accompanied by the EMOTION REFERENCE SHEET to further probe on what
negative/positive emotion was felt.

MENTAL LENS Q1e: What was going through your mind at this time? What were you thinking?
Try to capture verbatim quotes if possible.

Q1f. Were there any resources or tools that you used during this time to better
understand the situation or help you make a decision?
● What were they?
● How did you find out about them? Were they provided to you by HCPs?
● Were they helpful? Why or why not?
● What information did they provide?
Facilitator can show participants the TOOLS & RESOURCES reference sheet as a helpful
prompt.
BIG MOMENTS Q1g: What was your most negative moment during this phase?
What was your most positive moment during this phase?

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DIAGNOSIS
Purpose: To gain an understanding of patients’ experiences when they were diagnosed.

Example of how to Thank you for sharing your experience. We’re now going to ask you some questions
introduce this specifically around how you came to learn of the [DISEASE] diagnosis.
phase Keep discussion focused on the diagnosis itself. If participants start to discuss treatment
options, kindly inform them that you will get there, but for now the goal is to understand the
diagnosis experience.
MEDICAL LENS Q2a: Can you tell me more about when and how you were diagnosed?
● What led you to seek a medical opinion?
● How long did it take to get a [DISEASE] diagnosis (from moment at doctor to a
confirmed diagnosis)?

Q2b: Who did you speak with during this time (friends, family, HCPs)?
● In what ways did this individual impact your experience?
● (For HCPS) How would you describe the interactions that you have with the
doctor/specialist?
Facilitator can show participants the RELATIONSHIPS reference sheet as a helpful prompt.
Probe on why these relationships were important during this phase.

Ask participants to share anecdotes to illustrate their experiences, and request that other
participants reflect on how similar or different their relationships are.
PHYSICAL LENS Q2c: Were there any key moments where you felt your body change because of
your diagnosis? Did you experience any symptoms?
Facilitator can show participants the SYMPTOM FOUR-POINT SCALE as a prompt to initially
capture the presence and severity of symptoms before prompting further discussion. Note
how their symptoms may be connected to what was described in the medical lens.
EMOTIONAL LENS Q2d: What were you feeling at this time?
Facilitator can show participants the EMOTIONAL SEVEN-POINT SCALE to capture where
participants fall on the scale.

This can be accompanied by the EMOTION REFERENCE SHEET to further probe on what
negative/positive emotion was felt.

Q2e: Throughout this period, how would you describe the emotional journey you
went through?
MENTAL LENS Q2f: What was going through your mind at this time? What were you thinking?
Try to capture verbatim quotes if possible.

Q2g: What did you know about [DISEASE] at the time?

● What were the biggest questions you had (if any) throughout this period?

Q2h: Were there any resources or tools that you used during this time to better
understand the situation or help you make a decision?
● What were they?
● How did you find out about them? Were they provided to you by HCPs?
● Were they helpful? Why or why not?
● What information did they provide?
Facilitator can show participants the TOOLS & RESOURCES reference sheet as a helpful
prompt.
BIG MOMENTS Q2i: What was the most negative moment during this phase? When did it occur?
What was the most positive moment during this phase? When did it occur?

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1st TREATMENT
Purpose: To gain an understanding of patients’ experiences with their first line treatment; from how the
decision was made to how they came off treatment.

Example of how to We’re now going to move on and discuss your experience with receiving your first
introduce this line treatment for [DISEASE].
phase
We understand that everyone here may have experienced [DISEASE] differently, and
we want to hear all of your experiences.

If the participant has had multiple treatments, it is helpful to let them know that the discussion
is related to their 1st treatment only, but there will be opportunities to discuss their other
treatments later on.
MEDICAL LENS Q3a: Can you tell us about how you and your physician/HCP team decided on
treatment?
● How was that decision made? Who or what initiated the decision to begin
treatment?
● What did that decision-making process look like for you?
● How was the treatment introduced to you?
● How long were you on that treatment?
● When and why did you stop treatment?

Q3b: Who did you speak with during this time (friends, family, HCPs)?
● In what ways did this individual impact your experience?
● (For HCPS) How would you describe the interactions that you have with the
doctor/specialist?
● Are there any other relationships that have really stood out to you when you think
about your experience?
Facilitator can show participants the RELATIONSHIPS reference sheet as a helpful prompt.
Probe on why these relationships were important during this phase.

Ask participants to share anecdotes to illustrate their experiences, and request that other
participants reflect on how similar or different their relationships are.
PHYSICAL LENS Q3c: Did any physical changes occur during this time? Did you experience any
symptoms?
Facilitator can show participants the SYMPTOM FOUR-POINT SCALE as a prompt to initially
capture the presence and severity of symptoms before prompting further discussion.

Note how their symptoms may be connected to what was described in the medical lens.
Try to probe on whether symptoms experienced were caused by disease or as a side effect of
treatment. While this is helpful data to capture, be aware that participants may not be able to
distinguish between the two.
EMOTIONAL LENS Q3d: What were you feeling at this time?

Facilitator can show participants the EMOTIONAL SEVEN-POINT SCALE to capture where
participants fall on the scale.

This can be accompanied by the EMOTION REFERENCE SHEET to further probe on what
negative/positive emotion was felt.

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 Q3e: Throughout this period, how would you describe the emotional journey you
went through?
MENTAL LENS Q3f: What was going through your mind at this time? What were you thinking?
Try to capture verbatim quotes if possible.

Q3g: When starting treatment, what did you expect it would do for you? (side effects,
outcomes, impact on life/daily living)

Q3h: Were there any resources or tools that you used during this time to better
understand the situation or help you make a decision?
● What were they?
● How did you find out about them? Were they provided to you by HCPs?
● Were they helpful? Why or why not?
● What information did they provide?
Facilitator can show participants the TOOLS & RESOURCES reference sheet as a helpful
prompt.
BIG MOMENTS Q3i: What was the most negative moment during this phase? When did it occur?
What was the most positive moment during this phase? When did it occur?

RECOVERY or REMISSION or ONGOING TREATMENT

Purpose: To gain an understanding of patients’ experiences during recovery/remission/ongoing treatment.

Example of how to Now that we’ve covered your first treatment, we wanted to create a bit of time to mark
introduce this down what has happened since; perhaps you’ve received additional treatments, or
phase perhaps you’re currently in a remission (or stable) phase or have recovered.

If the participant has experienced additional/multiple treatments, this is where you may wish to
explore those in more detail. For each treatment, aim to capture the four lenses, moments that
stood out (highs and lows).
MEDICAL LENS Q4a: Can you tell us about your experience with [recovery/remission/ongoing
treatment/ongoing treatment]?
● How long did this last?

Q4b: Who did you speak with during this time (friends, family, HCPs)?
● In what ways did this individual impact your experience?

Facilitator can show participants the RELATIONSHIPS reference sheet as a helpful prompt.
Probe on why these relationships were important during this phase.

Ask participants to share anecdotes to illustrate their experiences, and request that other
participants reflect on how similar or different their relationships are.

For ongoing treatment: Probe on how treatment decisions were made, how they came off
treatment, and how this was different versus first line treatment.

PHYSICAL LENS Q4c: Did any physical changes occur during this time? Did you experience any
symptoms?
Facilitator can show participants the SYMPTOM FOUR-POINT SCALE as a prompt to initially
capture the presence and severity of symptoms before prompting further discussion.

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 For remission or recovery: note how the (absence of) symptoms may be connected to what
was described in the medical lens.

For ongoing treatment: Note how their symptoms may be connected to what was described
in the medical lens. Try to probe on whether symptoms experienced were caused by disease
or as a side effect of treatment. While this is helpful data to capture, be aware that participants
may not be able to distinguish between the two.
EMOTIONAL LENS Q4d: What were you feeling at this time?

Facilitator can show participants the EMOTIONAL SEVEN-POINT SCALE to capture where
participants fall on the scale.

This can be accompanied by the EMOTION REFERENCE SHEET to further probe on what
negative/positive emotion was felt.

MENTAL LENS Q4e: What was going through your mind at this time? What were you thinking?
Try to capture verbatim quotes if possible.
● What were the biggest questions you had (if any) throughout this period?
Q4f: Were there any resources or tools that you used during this time?
● What were they and what information did they provide?
● How did you find out about them (were they provided by HCPs)?
● Were they helpful? Why or why not?
Facilitator can show participants the TOOLS & RESOURCES reference sheet as a helpful
prompt.

BIG MOMENTS Q4g: What was the most negative moment during this phase? When did it occur?
What was the most positive moment during this phase? When did it occur?

WRAP UP
Purpose: To wind down the interview/session and provide the chance for the participant(s) to share aspects
of their experience that may not have emerged during the conversation so far.

Example of how to I want to thank you for sharing your experience with me. Before we wrap up, I wanted
introduce this to ask you:
section
Q5: If there was one thing that you think people need to understand about what it’s
like to live with [DISEASE], what would that be?

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