Advancing stated-preference methods for measuring the preferences of patients with type 2 diabetes

Transcription

1 Advancing stated-preference methods for measuring the preferences of patients with type 2 diabetes Second DAB Meeting November 20, 2014 Baltimore, MD

2 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

3 Section Outline Qualitative study methods Results Prioritization task - Lynch - Purnell - Bridges

4 Qualitative Study Methods Thomas James Lynch, PhD Sr. Research Program Coordinator

5 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.

6 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.

7 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.

8 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.

9 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.

10 Focus Group Sessions Focus groups were held at JHSPH and Shepherd s Clinic; each group lasted between minutes and consisted mainly of older- adult, female, African- Americans Focus group sessions were audio- recorded and transcribed.

11 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.

12 Qualitative Results Tanjala S. Purnell, PhD MPH Assistant Professor Johns Hopkins School of Medicine

13 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

14 Barriers to Management Dimension Financial burden Managing multiple chronic conditions Sample Quotations 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. 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

15 Barriers to Management Dimension Poor provider relationships Fragmented medical care Sample Quotations 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. 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.

16 Facilitators of Management Dimension Social support Good provider relationships Sample Quotations 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. 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.

17 Facilitators of Management Dimension Patient activation Healthy behaviors Sample Quotations 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. 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.

18 Personal Concerns Dimension Death and disability Medication side effects Sample Quotations 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. 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.

19 Personal Concerns Dimension Hereditary condition Stigma Sample Quotations 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. 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.

20 Interpretation of Findings What do you think of these results? Are the themes we iden9fied consistent with your experiences? Were there any surprising results?

21 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.

22 Prioritization Tasks John FP Bridges, PhD Study Principal Inves9gator

23 Presentation Outline Randomized Experiments Prioritization Methods Self-explicated method vs. BWS Case one

24 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.

25 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

26 Prioritization Methods Method Example Scores Strengths Weaknesses Rating On a scale of one to five, how important are the following restaurant features? Food, Service, Atmosphere, Price Rating scores Little burden on respondents Limited reflection of priorities and preferences, Floor and ceiling effects Ranking Rank the following restaurant features based on their importance: Food, Service, Atmosphere, Price Scores from the rank Better reflects priorities More burdensome, Random effects for equivalent factors Selfexplicated Method First rate and then rank the importance of these restaurant features: Food, Service, Atmosphere, Price Rating ranking scores Addresses the weaknesses associated with using either rating and ranking alone More burdensome

27 Priotization Methods, Con td Method Example Scores Strengths Weaknesses 2^K Conjoint Analysis Choose your preferred restaurant in each pair: A restaurant with great food and great atmosphere OR A restaurant that has great food, low prices, and is easy to get to Advanced statistical techniques Reveals priorities and tradeoffs between outcomes Burdensome, Technical in design Best- Worst Scaling (Object Case) Choose the most and least important restaurant feature in each list: Food, Service, Location, Price Advanced statistical techniques Reveals priorities and tradeoffs, Requires less choice questions Technical in design

28 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) Please rank the snacks in order of how much you want to choose them (1- you want to choose it the least, 7- you want to choose it the most) Wine gums Nuts Muffin Apple Baby carrots Pop corn Chocolate Wine gums Nuts Muffin Apple Baby carrots Pop Corn Chocolate

29 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

30 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

31 Protecting Health, Saving Lives Millions at a Time