Patient/Caregiver Discussion Guide

Project – Zeta(six)
Respondent Type:

Profiles Prescribed 1st Dose 1st Repeat 2nd Repeat

Rejecters Yes No - -
Lapsers Yes Yes No -
Users Yes Yes (Likely*) -
Repeater Yes Yes Yes (Likely*)
*Has taken 1st dose / 1st repeat but are yet to complete 6 months post
medication (and are likely to be due in some months for 1st repeat or 2nd
repeat)

Instructions for the moderator / researcher

 During the discussion, moderator to not sit in one place. It is

recommended that the moderator follow the respondent as she
continues with her regular chores.
 Moderator can also ask the respondent leading tasks
o Can I please have some water / tea.
o Can you show me the washroom?
 Moderator to note respondent posture and any ‘pain’ related sounds
that she might make. Or any comments regarding her discomfort.
Introduction /
Hi, my name is ____________ from Modulus Research. We conduct customer- Ice Breaking
understanding studies for various products and services. Part of our job is to Session
meet people and understand their opinions about the various products &
services they use. This helps us give constructive feedback to companies so that
they can improve their products and service.

Today we would like to understand your journey post menopause and

associated issues. We would just like to know your opinion, your experience.
Please note that there is no right or wrong answers; just share your thoughts
freely. We will be recording this discussion to avoid loss of information and
everything you say will remain confidential.

General Understanding of the journey 10 min

1. Could you give me an introduction about yourself? Patient profile

 Name, education, occupation, family set up, living in joint or
nuclear family
2. Can you tell me about your regular lifestyle, your personal interests and
hobbies? How do you describe your lifestyle? Moderator to allow
spontaneous response and note them on show cards.
3. Could you please tell me if there has been any changes in your lifestyle
in the last year or two? How has this change affected? Note for
spontaneous mentions before probing for
 Daily activities (Household chores – indoor and outdoor)
 Diet related changes
  Exercise related changes
 Social / family changes (owing to ailments/disease in the family)

4. Let us now talk about your health condition. What are the changes in
your health condition that you have experienced in the past few
years/months? Allow spontaneous mention and check for mention of
Osteoporosis (Do not aid at this stage).
For the following sub-questions (including Q5 and Q6) probe Changes in
for each condition as mentioned by the respondent in Q4 (Do health
not probe for Osteoporosis at this stage) condition
 Since how many months/years have you been experiencing this
problem?
 Were there any other problems that were you suffering from at
that point of time? Can you please elaborate?
 Or any problem that started along with this health issue? Can
you please elaborate?

5. Did you try to find out more details about the health condition? What
was it?
 Whom did you speak you? – doctor, friends, colleagues
 Other sources of information - internet, any specific website
 Kind of Information searched
 Any unanswered questions?
6. What was the role of family/ friends as caregivers to you? What do they
help with? What else?
Patient Journey 10 min

Our current discussion is specifically about Osteoporosis (A condition in which

bones become weak and brittle and is more prone to fracture). I understand
you have consulted the doctor for this problem. Request you to go back to the
time …
Diagnosis
1. What were the initial symptoms/problems that you faced? Please
express in your own words.
2. During initial stage of the problem, what made you go to the doctor? Can
you please elaborate on symptoms that prompted you to seek medical
help/visit doctor? Note the symptoms mentioned. Note any pain or
bone related issue mentioned.
3. How did you decide to consult a doctor for the problem/condition?
 How did you finalise the doctor for consultation? Who was the
key influencer to take a final decision about doctor selection?
Why?

4. What did you tell the doctor? Express in your own words. What did you
discuss with him? Kindly explain your interaction with him / her?

5. When was osteoporosis diagnosed? How was the diagnosis done?

6. What specific information did doctor share with you about your medical
condition - Osteoporosis, its progression and its impact on health? Doctor
 Were you aware of this problem before this? What did you know Consultation
about it?
 7. Did the doctor initiated a treatment or he referred you to some other
specialist? Whom did he/she refer you to? Why?
8. Did you search for any information about the problem? What kind of
information? Kindly elaborate.
 What were the sources of information you explored? Who
suggested you about these sources?
Treatment 40 min
ASK ALL
Information
Let me ask you about the treatment in a little detail. regarding
1. What was the treatment that the doctor initiated for osteoporosis? treatment
Allow spontaneous responses (Ask the patient if they can show the
patient file/ prescription /medicine kit)

Check for mention of Prolia (Denosumab). If Prolia not mentioned,

moderator to ask questions 2&3 without mentioning Prolia and then
prompt the name. .

2. Please recollect and tell me what did the doctor tell you about the
treatment?
 Duration of treatment – Number of dosage : What did the
doctor say about the duration of the treatment? Is it time
bound or lifelong?
 How long it will take to feel the effect of the treatment
 Cost
 Side effects

3. When you were recommended the treatment? Think back and tell me
what were the questions that you had in your mind? Why?
 Length of treatment suggested
 Frequency of medication recommended
 Method of administering medication
 Cost
 Side-effects
 Visible symptoms of efficacy
 Experienced effects of efficacy

If Prolia as a brand not mentioned by the patient yet, moderator to do

any of the following to ensure the brand is recollected.
 check for it in the patient file and ask the patient if they
recollect the medication.
 In-case if the patient still is not able to recollect explain the
following
“An injection given subcutaneously in the thigh, abdomen or
upper arm”
 Use the image attached in appendix 1 to aid the patient to
recollect the medicine

Ask the following questions to all, irrespective of spontaneous or

aided awareness of brand.
 4. What were your expectations when you heard about this particular Expectations
treatment? What did you feel the treatment will do for you? Explore in
details.

5. Did you ask around or seek any kind of information about this
treatment? What did you ask / want to know? From where did you
check this information?

6. What do you think are the positives of this treatment? What are the
negatives?

7. If you were to recommend this treatment to someone, what would you

say to them?

ASK TO ALL REJECTERS

8. I get to know that though you were recommended for the therapy but Reasons and
have not taken the dose. Can you please tell me what was it that barriers
prevented you from doing so? Allow spontaneous response before
probing for
a. Length of treatment suggested
b. Frequency of medication recommended
c. Method of administering medication
d. Cost - benefit
e. Side-effects
f. Visible symptoms of efficacy

Probe to understand the barriers for the respondent to not

undertake the therapy

9. Which of these is the most important reason would you say? If price is
mentioned as a barrier, specifically ask to ignore the price and choose
from the other aspects.
 Can this aspect be changed in any way? How so? Will that make
you take the treatment?

10. In your opinion what should be done so that more patient like you Changes that
adopt the therapy in future? can help
 If all the suggestion are implemented how likely are you to
undertake the 1st dose of the therapy. Please base you
response on a 5 point scale where 1 is will not undertake and 5
is definitely undertake.
 Similarly how likely are you to undertake the subsequent doses
of the therapy? Please base you response on a 5 point scale
where 1 is will not undertake and 5 is definitely undertake.
 Please tell me what will be maximum no. of dose that you will
undertake?
ASK TO ALL LAPSERS

11. After the physician recommend the therapy; you took the 1st dose? Can Triggers to trial
you please tell me what was the trigger for you to undertake the
medication? Allow spontaneous response before probing for
a. Recommendation for the doctor
b. Severity of the pain
c. Physical condition/ailment
d. Lower risk of fracture
e. Etc.

Probe to understand the triggers for the respondent to undertake

the 1st dose

12. What were your expectations from this treatment? Moderator to

probe to understand the source of expectation and whether the
sufferer misunderstood the doctor’s advice.

13. Did you check with anyone or at any place about this treatment? What Other sources
did you ask? To whom did you ask? What did you come to know? of information

14. After you undertook the 1st dose, what were the benefits that you
realized?
 Reduced pain
 Able to undertake various activities
 Etc.

15. How would you rate the therapy based on your initial expectations Expectation v/s
from it? experience

16. I get to know that you have not taken the subsequent dose of the
therapy. Can you please tell me what was it that prevented you from
doing so? Allow spontaneous response before probing for
a. Length of treatment suggested
b. Frequency of medication recommended
c. Method of administering medication
d. Cost - benefit
e. Side-effects
f. Visible symptoms of efficacy

Probe to understand the barriers for the respondent to not

undertake the 1st repeat

17. Which of these is the most important reason would you say? Price a concern
 If price is mentioned as a reason, specifically ask to ignore the or efficacy?
price and choose from the other aspects.
 For those who continue to stick to price as a key reason,
mention that the average expense for the treatment is 100
Rs/day. Probe to understand their reaction.
 If lack of visible efficacy is mentioned as a reason, probe
further to understand
 i. What benefits did you expect after the first dosage?
ii. From where did you come to know of this particular
benefit? Did the doctor tell you about this?
iii. What was the actual experience life? If you were to
rate experienced efficacy on a scale of 7 (1 being least
effective, 7 being most effective), where would you
place your experience? How close or far is this vis-à-vis
your expectation?

18. In your opinion what should be done so that more patient like you Changes that
adopt the therapy in future? can help
 If all the suggestion are implemented how likely are you to
undertake the 1st repeat dose of the therapy. Please base you
response on a 5 point scale where 1 is will not undertake and 5
is definitely undertake.
 Similarly how likely are you to undertake the subsequent doses
of the therapy? Please base you response on a 5 point scale
where 1 is will not undertake and 5 is definitely undertake.
 Please tell me what will be maximum no. of dose that you will
undertake?

ASK ALL (USERS and REPEATERS)

19. After the physician recommend the therapy; you took the 1st dose? Can
you please tell me what was the trigger for you to undertake the
medication? Allow spontaneous response before probing for
a. Recommendation for the doctor
b. Severity of the pain
c. Physical condition/ailment
d. Lower risk of fracture
e. Etc.

Probe to understand the triggers for the respondent to undertake

the 1st dose

20. After you undertook the 1st dose, what were the benefits that you
realized?
 Reduced pain
 Able to undertake various activities
 Etc.

21. How would you rate the therapy based on your initial expectations
from it?

22. What are your expectations from the next dose? Expectation
from 2nd dose
23. By when do you expect to see / feel results of this treatment?

24. Do you think there is anything that is likely to affect your treatment?
What? Is it going to be a positive effect or negative? Why?
 25. How do you think that will affect your health situation?

26. In few months from now; you are likely to be due for the 1st repeat
dose? Can you please tell me what would be the trigger for you to
undertake the 1st repeat dose? Allow spontaneous response before
probing for
a. Recommendation for the doctor
b. Severity of the pain
c. Physical condition/ailment
d. Lower risk of fracture
e. Etc.

27. Also tell me what could be the possible barriers that will prevent you
from undertaking the 1st repeat dose? Allow spontaneous response
before probing for
f. Length of treatment suggested
g. Frequency of medication recommended
h. Method of administering medication
i. Cost - benefit
j. Side-effects
k. Visible symptoms of efficacy

Probe to understand the barriers for the respondent to not

undertake the 1st repeat

28. Which of these is the most important reason would you say? If price is
mentioned as a barrier, specifically ask to ignore the price and choose
from the other aspects.

29. How likely are you to undertake the next dose (1st repeat/ 2nd repeat) of
the therapy. Please base you response on a 5 point scale where 1 is will
not undertake and 5 is definitely undertake.
 Similarly how likely are you to undertake the subsequent doses
of the therapy? Please base you response on a 5 point scale
where 1 is will not undertake and 5 is definitely undertake.
 Please tell me what will be maximum no. of dose that you will
undertake?

30. In your opinion what should be done so that more patient like you
adopt the therapy in future? What makes you say that?

To be asked to the caregivers 20 min

Caregiver definition: Son, Wife, Daughter, Daughter-in-Law, Nurse, and Maid –

anyone who is in charge of taking care of the respondent’s health needs.

1. How are you related to the respondent? What is your role in her life?

2. Were you there when she was diagnosed with Osteoporosis? Can you
please recount that incident?
  What do you think she felt when she heard the diagnosis?
What makes you say that?
 What was your reaction when she was diagnosed? What were
your feelings?

3. What did you recommend to her? On what basis was your

recommendation made? Allow spontaneous responses before probing
on
 Length of treatment suggested
 Frequency of medication recommended
 Method of administering medication
 Cost
 Side-effects
 Visible symptoms of efficacy
 Experienced effects of efficacy

ASK Q4-8 TO ALL (EXCEPT REJECTERS)

4. What made her start with the treatment? What makes you say that?
5. Was it what you recommended? If not, who / what contributed to her
taking this decision?

6. What made her continue with the treatment? What makes you say
that? Note if ‘visible difference’ is mentioned.

7. Was it what you recommended? If not, who / what contributed to her

taking this decision?

8. Going forward, what would you recommend the makers or Prolia to do

such that she and people like her take this treatment? Note for
mentions of, and probe for
 Flyers / Posters
 Workshops – free
 Workshops – Paid
 Mass Media campaign
 Doctor’s recommendation
 Pharmacist recommendation

ASK Q9-10 TO REJECTERS

9. Why do you think she did not start the treatment? Was it what you
recommended? If not, who / what contributed to her taking this
decision?

10. What could be done to reverse her decision on this treatment?

ASK Q11-12 TO LAPSERS

11. Why do you think she discontinued the treatment? Was it what you
recommended? If not, who / what contributed to her taking this
decision?

12. What could be done to reverse her decision on this treatment?

 ASK ALL
13. If I were to tell you that the treatment costs around Rs 100/- per day,
what would your reaction be? Note non-verbal reactions also. Probe
to understand whether the willingness to go ahead with the
treatment increases or not.

Related to lifestyle – for all

I observed you were having this ____________ (mention observation related to

pain and discomfort). What is the problem you are facing? What are you doing
for it?

Appendix 1