Advancing stated-preference
methods for measuring the
preferences of patients with type 2 diabetes
Second DAB Meeting
November 20, 2014
Baltimore, MD
Development of the
Prioritization Task
Thomas James Lynch, PhD
Tanjala S. Purnell, PhD MPH
John FP Bridges, PhD
Johns Hopkins Bloomberg School of Public Health
Section Outline
•  Qualitative study methods
•  Results
•  Prioritization task
© 2014, Johns Hopkins University. All rights reserved.
- Lynch
- Purnell
- Bridges
Qualitative Study Methods
Thomas James Lynch, PhD Sr. Research Program Coordinator Qualitative Research Project
•  Focuses on advancing methods for pa9ent and community engagement in pa9ent-­‐centered outcomes research (PCOR); •  Demonstrates good prac9ces for pa9ent and community involvement in PCOR. © 2014, Johns Hopkins University. All rights reserved.
Study Aim
•  To ‘give voice’ to people diagnosed with Type II diabetes so they can beHer describe the barriers and facilitators associated with management of the illness and personal concerns related to it. © 2014, Johns Hopkins University. All rights reserved.
Study Methods
•  Focus groups were selected as they are oIen used to guide development of ques9ons in subsequent quan9ta9ve surveys •  Informa9on gathered from the focus groups will guide the development of survey instruments to further measure pa9ent priori9es and preferences in part two of the study. © 2014, Johns Hopkins University. All rights reserved.
Study Methods
•  During October/November 2014, semi-­‐
structured interviews in the form of three focus groups (n=24) were conducted with members of the East Bal9more community diagnosed with Type II diabetes to solicit priori9es and preferences rela9ng to management of their illness. © 2014, Johns Hopkins University. All rights reserved.
Focus Group Recruitment
•  Purposive sampling was undertaken in collabora9on with the JH Community Research Advisory Council (C-­‐RAC) Diabetes SubcommiHee; •  Strategies included: distribu9ng flyers in the community; announcements at local events; personal communica9on. © 2014, Johns Hopkins University. All rights reserved.
Focus Group Sessions
•  Focus groups were held at JHSPH and Shepherd’s Clinic; each group lasted between 60-­‐90 minutes and consisted mainly of older-­‐adult, female, African-­‐
Americans •  Focus group sessions were audio-­‐recorded and transcribed. © 2014, Johns Hopkins University. All rights reserved.
Data Analysis
•  Focus group data were analyzed using interpre9ve phenomenological analysis (IPA) to try to understand the lived experience of diabetes, how par9cipants make sense of that experience, and what factors they value most. © 2014, Johns Hopkins University. All rights reserved.
Qualitative Results
Tanjala S. Purnell, PhD MPH Assistant Professor Johns Hopkins School of Medicine Key Themes and Dimensions
Barriers to
Management
•  Financial burden
•  Multiple chronic conditions
•  Poor provider relationships
•  Fragmented care
Facilitators of
Management
Personal Concerns
•  Social support
•  Good provider relationships
•  Patient activation
•  Healthy behaviors
•  Death and disability
•  Medication side effects
•  Hereditary condition
•  Stigma
© 2014, Johns Hopkins University. All rights reserved.
Barriers to Management
Dimension
Sample Quotations
Financial burden
“If someone is on a fixed income, you know it’s
really, really hard to try and buy certain foods that
are needed to maintain a good nutritional diet.”
“The other problem is the medication costs so
much; the price is so high.”
Managing multiple
chronic conditions
“Unfortunately I can’t do a lot of exercise because of
the other health issues that I have.”
“The diabetes doctor said to eat whole grains, but
the kidney doctor said I can’t”
© 2014, Johns Hopkins University. All rights reserved.
Barriers to Management
Dimension
Sample Quotations
Poor provider
relationships
“He’ll say, ‘Are you the doctor, or am I?’ and it knocks
you down.”
“The doctors don’t want to hear that [the medication
negatively affects your body]; they just want to keep
popping them different pills.”
“Everybody is different, but many physicians focus on
treating everybody the same.”
Fragmented
medical care
“If the doctors worked closer together instead of doing
their own thing, it would help us and our health.”
“I had one doctor and I changed doctors…I was just a
number, just another patient out of 70 or 100.”
© 2014, Johns Hopkins University. All rights reserved.
Facilitators of Management
Dimension
Sample Quotations
Social support
“When you find out other people have it [diabetes]
that helps you cope too”
“A lot of people in my family know about my
diabetes; so there is diabetic apple pie, and there is
[non-diabetic] apple pie.”
Good provider
relationships
“I had a wonderful doctor. I trusted that he was
giving me all of the information I needed to take
care of my body.”
“I have a partnership with my primary care doctor,
and it means a lot.”
© 2014, Johns Hopkins University. All rights reserved.
Facilitators of Management
Dimension
Sample Quotations
Patient activation
“We have to let him [the doctor] know what works
for us and what doesn’t work.”
“A lot of times I have to plan ahead if I am going
places. I would take water and salad….”
Healthy behaviors
“I lowered my A1c from 7.3 to 6.5 by changing my
diet and incorporating more fruit and vegetables.”
“Walking does everything for me…I feel like a brand
new person…like a million dollars.”
© 2014, Johns Hopkins University. All rights reserved.
Personal Concerns
Dimension
Sample Quotations
Death and disability
“To me, it is scary because everyone in my family
passed away at a young age.”
“When I was first diagnosed, I had a fit. All I could think
about was losing my eyesight or being an amputee.”
Medication side effects
“I don’t want to get on medicine. I don’t want to face the
consequences later and can’t sleep at night.”
“I swear my diabetes came from medication I take.”
© 2014, Johns Hopkins University. All rights reserved.
Personal Concerns
Dimension
Sample Quotations
Hereditary condition
“With my family history, I just assumed it would
happen to me.”
“If I could learn something that may prevent my
daughter from coming down this road, it would be
very helpful.”
Stigma
“You don’t want to tell people that you have
diabetes. You don’t want people to know.”
[regarding insulin needles] “I feel like a drug addict.
I’m sorry but that is how I feel.”
“I am sorry I did this to my body but give me some
respect…don’t look at me like I am some monster.”
© 2014, Johns Hopkins University. All rights reserved.
Interpretation of Findings
•  What do you think of these results? •  Are the themes we iden9fied consistent with your experiences? •  Were there any surprising results? © 2014, Johns Hopkins University. All rights reserved.
Further community collaboration
•  At the end of each session, many par9cipants requested addi9onal informa9on about the study and expressed a keen interest in mee9ng again to discuss a summary of findings from the focus groups. © 2014, Johns Hopkins University. All rights reserved.
Prioritization Tasks
John FP Bridges, PhD Study Principal Inves9gator Presentation Outline
•  Randomized Experiments
•  Prioritization Methods
•  Self-explicated method vs. BWS Case one
© 2014, Johns Hopkins University. All rights reserved.
Priorities vs. Preference
Patient priorities are how patients value and rate the
importance of multiple goals.
•  objectives compete with one another
Patient preferences are a reflection of the choices that
patients make among several alternatives
•  based on the happiness, satisfaction, gratification, or
enjoyment obtained from each alternative.
© 2014, Johns Hopkins University. All rights reserved.
Randomized Experiment
•  Design two different priority elicitation tasks
•  Randomly assign respondents to the different priority
elicitation tasks
Motivation:
•  Paucity of research comparing different priority elicitation
methods.
•  Use of a randomized trial will increase ability to draw
inferences from results
•  Fill in evidence gaps in stated-preference methods
•  Advance measurement of patients’ and
stakeholders’ values
•  Introduce stakeholders to innovative stated-preference
methods
© 2014, Johns Hopkins University. All rights reserved.
Prioritization Methods
Scores Strengths Method Example Rating On a scale of one to
Rating
five, how important are scores the following
restaurant features?
•  Food , Service, Atmosphere, Price Ranking Rank the following
restaurant features
based on their
importance:
•  Food , Service, Atmosphere, Price Selfexplicated
Method First rate and then
Rating ×
rank the importance of ranking
these restaurant
scores features: •  Food , Service, Atmosphere, Price Weaknesses Little burden on Limited
respondents
reflection of
priorities and
preferences, Floor and
ceiling effects Scores Better reflects
More
from the priorities
burdensome, rank Random effects
for equivalent
factors Addresses the More
weaknesses
burdensome associated with using either
rating and
ranking alone © 2014, Johns Hopkins University. All rights reserved.
Priotization Methods, Con’td
Method Example Scores 2^K Choose your preferred
Conjoint restaurant in each pair: Analysis •  A restaurant with great
food and great
atmosphere OR •  A restaurant that has
great food, low prices,
and is easy to get to BestWorst
Scaling
(Object
Case) Strengths Weaknesses Advanced Reveals
Burdensome,
statistical priorities and Technical in
techniques tradeoffs
design between
outcomes Choose the most and least Advanced
important restaurant
statistical
feature in each list: techniques •  Food, Service, Location, Price © 2014, Johns Hopkins University. All rights reserved.
Reveals
Technical in
priorities and design tradeoffs, Requires
less choice
questions Self-Explicated Method
How much do you want to choose each snack?
Please rate, on a scale of 1-5, how
much you want to choose each snack
(1- do not want choose it at all, 5- you
want to choose it a lot)
• 
• 
• 
• 
• 
• 
• 
Wine gums
Nuts
Muffin
Apple
Baby carrots
Pop corn
Chocolate
Please rank the snacks in order of
how much you want to choose them
(1- you want to choose it the least, 7you want to choose it the most)
• 
• 
• 
• 
• 
• 
• 
Wine gums
Nuts
Muffin
Apple
Baby carrots
Pop Corn
Chocolate
© 2014, Johns Hopkins University. All rights reserved.
BWS Case One
How much do you want to choose each snack? Please look at the snacks below and indicate: •  The snack you want to choose the most. •  The snack you want to choose the least. Want the most Want the least ☐ Wine Gums ☐ ☐ Nuts ☐ ☐ Muffin ☐ ☐ Apple ☐ ☐ Baby carrots ☐ © 2014, Johns Hopkins University. All rights reserved.
Proposed Comparison
•  Self-explicated task (traditional) vs. BWS case one
(innovative)
•  Self-explicated method
•  Simple design and analysis
•  Prone to floor and ceiling effects
•  Prone to cultural biases
•  BWS case one
•  Reveals priorities and tradeoffs,
•  More complicated design and analysis
•  Less prone to floor and ceiling effects or cultural
biases
Concordance/discordance of self-explicated methods and
BWS case one still needs to get established
© 2014, Johns Hopkins University. All rights reserved.
Protecting Health,
Saving Lives—
Millions at a Time