CONCLUSIONS ¢ This study represents, to our knowledge, the first investigation of patients’ own preferences for support in the context of diabetes-management programs in a real-world

sample of patients with T2DM ¢ The majority of patients were not participating in any diabetes-management program; findings from this study suggest that those who participated in programs appeared to

be most satisfied with personalized programs ¢ Types of support most preferred were diet/weight loss management, supportive HCPs, and medication management. Patient preferences in diabetes program and support

varied based on patient demographics (i.e. sex, race, geographical region) ¢ Results provide general guidance for informing the design of future T2DM management support, and enhancing the delivery of patient-centered care for patients with T2DM.

Future studies that investigate in greater detail the program features that gain the attention of patients will be useful

REFERENCES1. Agency for Healthcare Reform and Quality. Guide to Patient and Family Engagement in Hospital

Quality and Safety. http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/. Accessed May 2015.

2. James J. Patient Engagement. Health Policy Brief: Patient Engagement, HealthAffairs. 2013 Feb 14. http://www.healthaffairs.org/healthpolicybriefs/brief.php?brief_id=86. Accessed May 2015.

3. Bailey RA, Damaraju CV, Martin SC, et al. Am J Manag Care. 2014:20 Suppl:S16-24.

4. Davies M, Speight J. Diabetes Obes Metab. 2012;14:882-92.5. Pi-Sunyer FX. Postgrad Med. 2009;121:94-107.6. Lee JD, Saravanan P, Varadhan L, et al. BMC. Health Serv Res. 2014;14:467. 7. Icks A, Rathmann W, Haastert B, et al. Diabet Med. 2007;24:473-80. 8. Glasgow RE, Nelson CC, Strycker LA, et al. Am J Prev Med. 2006;30:67-73. 9. Heisler M. Diabetes Spectrum. 2007;20:214-21.

ACKNOWLEDGMENTSThis analysis was supported by Janssen Scientific Affairs, LLC. Editorial support was provided by John Andrade, MSc, and Bilge Yoruk, PhD, of Excerpta Medica, and was funded by Janssen Scientific Affairs, LLC.

Understanding Preferences for Type 2 Diabetes Mellitus Self-Management Support – a Patient-Centered ApproachJanice M.S. Lopez,1* Bozena J. Katic,2 Marcy Fitz-Randolph,2 Richard A. Jackson,3 Wing Chow,1 C. Daniel Mullins4

*Presenting author.1Janssen Scientific Affairs, LLC, Raritan, NJ; 2PatientsLikeMe, Inc., Cambridge, MA; 3Harvard Medical School, Boston, MA; 4University of Maryland School of Pharmacy, Baltimore, MD; USA.

P O S T E R P R E S E N T E D AT T H E 75 T H A N N I V E R S A RY S C I E N T I F I C S E S S I O N S O F T H E A M E R I C A N D I A B E T E S A S S O C I AT I O N ( A DA ) , J U N E 5 - 9, 2 0 1 5, B O S TO N , M A S S AC H U S E T T S .

ABSTRACTDelivering patient-centered care is an evolving process in the US health care environment. Likewise, provider reimbursement and accountable care are becoming more heavily weighted on patient-centered measures. T2DM self-management support (SMS) programs have been shown to improve disease outcomes, yet participation remains low. Little is known about patients’ preferences for types of SMS programs. This study aimed to describe patients’ perspectives regarding participation in and preferences for SMS programs among a real world sample of patients with T2DM.We conducted a 2-phase study with people who self-reported T2DM among adult US members of PatientsLikeMe (PLM); an online research network of patients. Phase 1 consisted of qualitative interviews of a diverse sample (n = 10) to inform survey contents. In Phase 2, 294 of 898 invitees completed an online survey on their participation in and preferences for T2DM SMS program. Descriptive results are reported.Qualitative interviews revealed T2DM patients want conveniently accessible information and have the goals of weight loss and avoiding complications like hypoglycemia. They tend to be discouraged from programs with repetitive material and see programs as short term but support as ongoing. Among survey respondents (mean age 57; 64% female), the majority (63%) do not currently participate in programs, but most have goals of improving diet (77%), weight loss (71%), and having stable blood sugar levels (71%). Those who participate in programs appear most satisfied with individualized program planning, and report greater satisfaction (satisfied/very satisfied) with their health care teams than non-participants (76% vs. 62%, p<0.05). Overall, the types of support most preferred are diet/weight loss, supportive health care professionals, and medication management.Patients’ perspectives on T2DM SMS programs provide important guidance for enhancing the delivery of patient-centered care.

BACKGROUND ¢ Type 2 diabetes mellitus (T2DM) is primarily a self-managed disease in which self-care behaviors (e.g.

following a healthy diet, being physically active) play a crucial role ¢ Engaging patients in their own therapy has been shown to lead to quantifiable improvements in

health care quality and safety1,2

¢ Participation in diabetes-management programs is associated with improved disease control and slower disease progression in patients with T2DM2,3

¢ Patient preferences, needs, and values are increasingly being recognized as key drivers of patient engagement in disease-management programs,4,5 yet little is known about preferences for these programs in patients with T2DM, and participation remains low6,7

OBJECTIVE ¢ To assess and quantify the utilization of various types of diabetes-management programs, and to

elucidate patient preferences for diabetes-management and support programs in a real-world sample of patients with T2DM

METHODSStudy Design

¢ A two-phase qualitative and quantitative study was conducted in patients with T2DM, using members of the PatientsLikeMe® (PLM) online research network:

– Phase 1: literature review and 1-hour qualitative telephone interviews with PLM members were used to identify key patient concepts related to diabetes-management programs; PLM members recruited reported T2DM as a condition on their PLM profile, were active members in the diabetes forums of the PLM website, and were US residents aged ≥ 18 years

– Phase 2: development of a 90-question online survey evaluating patient preferences for T2DM management programs, based on concepts identified in Phase 1

¢ Inclusion criteria for the 90 question survey were: active participation in PLM; reporting T2DM as a condition on their PLM profile; US residency; and age ≥ 18 years

– The initial pool of invitations was limited to the most active PLM participants (those who had logged into the site in the past 90 days). A second pool of invitations was created that had lower activity (at least one login during the past year), and was oversampled for non-white members in order to increase the representation of non-white participants

¢ The survey included questions concerning patient demographics, overall quality of life, diabetes goals, current and past program participation, preferences for self-support, support network, treatments and complications, and comorbidities

Statistical Analyses ¢ Descriptive statistics were used to describe patient characteristics with respect to race, sex,

geographical region, residential area, age, educational level, and other covariates of interest; these patient characteristics were compared with the National Health and Nutrition Examination Survey (NHANES) 1999–2012 sample

¢ Chi-square statistics were used for categorical variables, and two-sample t-tests were used to compare groups for continuous covariates

¢ Personalized “other” programs were associated with the highest satisfaction rates (90.1%), followed by online programs, counseling/group programs provided by health insurance companies, and clinic/hospital/other HCP-based programs (80.0%, 78.6%, and 76.5%, respectively)

Table 1. Demographic Characteristics of US PLM T2DM Population (N = 294)Characteristic

Age, years, mean (± SD) 56.5 (± 10.6)

Sex, n (%)

Male 105 (35.7)

Female 189 (64.3)

Race (n = 292), n (%)

White 245 (83.9)

Black/African American 21 (7.2)

Mixed racea 10 (3.4)

Asian 5 (1.7)

Native American 1 (1.0)

Prefer not to say 10 (3.4)

Ethnicity, n (%)

Hispanic 10 (3.4)

Self-reported A1C (n = 146), mean (SD) 7.04 (±1.6)

Educational level (n = 286), n (%)

High school degree or less 51 (17.8)

Some college 129 (45.1)

College or higher 65 (22.7)

Post-graduate education 41 (14.3)aMixed race/other.SD, standard deviation.

¢ As this study was observational, the alpha for significance testing was relaxed to p ≤ 0.10 to observe marginally significant trends. Exact testing was used when necessary, and all tests were two-tailed

¢ Statistical analyses were conducted using SAS, Version 9.4 (Cary, NC)

RESULTSQualitative Interview Findings

¢ Of the 44 individuals invited to participate in the qualitative interview, 10 responded and completed the interview; 5 were female (mean age: 57.5 years [range 34–78]), 6 were non-Hispanic white; their educational level ranged from high school diploma to Masters’ degree

¢ Interviews revealed that participants’ hopes or expectations for disease-management programs included: the desire not to have diabetes or to slow or stop disease progression; to decrease or stop medication use; and to avoid disease complications

¢ Respondents tended to be discouraged from attending programs that had repetitive materials and were part of difficult to navigate health care systems

¢ A “program” was perceived as consisting of short-term education by health care professionals (HCPs), and “support” was perceived as daily interaction with friends and family

Quantitative Survey Process ¢ A total of 5,665 PLM users were invited to participate in the survey, 898 of these opened the survey

invite, and responses (including partial responses) were received from 294 US-based respondents (Figure 1)

Table 2. Types of Support Preferred by Characteristics of Survey Respondents

Financial assistance

(n = 80)

Regimen-related support(n = 79)

Diet/weight loss

support(n = 181)

Medication-management

support(n = 70)

More supportive/engaged doctors

and HCPs(n = 119)

Other(n = 34)

By sex, n (%)

Male (n = 103)

26 (25.2) 29 (28.2) 55 (53.4)a 23 (22.3) 41 (39.8) 17 (16.5)

Female (n = 191)

54 (28.3) 50 (26.2) 126 (66.0)a 47 (24.6) 78 (40.8) 17 (8.9)

By race, n (%)

White (n = 245)

60 (24.5)b 63 (25.7) 152 (62.0) 56 (22.9) 97 (39.6) 30 (12.2)

Non-white (n = 37)

15 (40.5)b 13 (35.1) 24 (64.9) 11 (29.7) 19 (51.3) 3 (8.1)

By residential area, n (%)

Rural (n = 37)

8 (21.6) 11 (29.7) 26 (70.3) 10 (27.0) 12 (32.4) 3 (7.5)

Suburban (n = 65)

17 (26.2) 18 (27.7) 37 (56.9) 12 (18.5) 23 (35.4) 12 (18.5)

Urban (n = 40)

10 (25.0) 11 (27.5) 29 (72.5) 12 (30.0) 15 (37.5) 54 (13.5)

aP = 0.03; bP = 0.04.

LIMITATIONS ¢ Due to the typically highly engaged patients in the PLM community, and the small sample size, the

results of our study may not be generalizable – As study respondents were all active users of PLM, the sample may be biased towards a highly

engaged group of patients proactively involved in the management of their own condition. However, results concerning program participation reflected trends seen in the overall population8,9

– The number of responses was insufficient for stratified analyses and formal statistical testing of results based upon demographics

Survey Sample

5,665Survey

Invites Sent898 Opened

333Responsesa

273completesb

35 USpartial

completes

60 partialcompletes

259 UScompletes

294US-based

respondents

Figure 1. Flow diagram of study participation.

24 (8.2%)

95 (32.3%)

98 (33.3%)

134 (45.6%)

167 (56.8%)

198 (67.3%)

Other

Presentations/videos

Verbal information from other diabetes patients

Verbal information from a doctor

Printed materials

Online information

0 100 150 200 250

Frequency and %

50

Figure 4. Form of support most preferred by participantsa (n = 294).

20 (6.8%)

119 (40.5%)

153 (52.0%)

199 (67.7%)

210 (71.4%)

210 (71.4%)

226 (76.9%)

0 50 100 150 200 250

None

Manage stress better

Do regular physical activity

Keep A1C value at a certain level

Keep blood sugar levels stable

Lose weight

Eat a better diet/manage food

Frequency and %

Figure 2. Diabetes management goals among survey respondentsa (N = 294).

aRespondents could select more than one goal.

Patient Preference for Diabetes Self-Management Programs and Support

¢ Overall, diet/weight-loss support was the most preferred type of support, followed by more supportive/engaged doctors and HCPs (Table 2)

– Respondents in urban or rural areas more frequently preferred diet/weight loss support compared with those in suburban areas

– Females more frequently preferred diet/weight loss support compared with males – More non-white respondents compared with white respondents reported wanting

more medication-management support and more supportive/engaged doctors and HCPs

– More non-white respondents than white respondents preferred financial assistance ¢ Doctors or nurses and dietitians were the most preferred sources of diabetes support (Table 3)

– Non-white respondents more frequently preferred dietitian support compared with white respondents

¢ Online information was the most preferred form for support information, followed by printed materials, and verbal information from a doctor (Figure 4)

Table 3. Sources of Support Preferred by Race and Education Level of Survey Respondents

A dietitian (n = 162)

My pharmacist

(n = 48)

My insurance company (n = 77)

My doctor or nurse (n = 179)

Other (n = 53)

By race, %

White (n = 245) 53.0a 16.7 25.7 62.9 18.4

Non-white (n = 37) 67.6a 13.5 29.7 56.7 13.5

By education, %

College and post-doc (n = 106) 53.8 17.0 24.5 60.4 17.0

Some college education (n = 129) 60.5 16.3 27.9 63.6 17.0

High school degree or less (n = 51) 43.1 15.7 23.5 60.8 23.5All values are expressed as percentages.aP = 0.10.

Sample Characteristics ¢ PLM respondents were on average aged 56.5 years, 83.9% white, and 64.3% female (Table 1); compared

with the NHANES 1999–2012 sample, PLM respondents were generally younger (56.5 years vs. 63.9 years), predominately more white (83.9% vs. 37.9%), and predominately more female (64.3% vs. 48.0%)

¢ Among those who reported on their comorbidities (n = 264), the vast majority (98%) reported having ≥ 1 additional comorbid condition; overweight/obesity (81%), high blood pressure (72%), high blood cholesterol (71%), and depressive disorders (59%) were the most common comorbid conditions reported among the sample

¢ The most frequently selected diabetes management goals of survey respondents were eating a better diet/managing food, losing weight, and keeping blood glucose levels stable (Figure 2)

Diabetes Program Utilization ¢ 184 of 285 respondents (64.6%) with non-missing values reported currently not participating in any

disease-management program. Among respondents currently participating in programs, clinic/hospital/other HCP-based programs were the most commonly used, followed by online programs, and “other” personalized programs (e.g. specific diet plans, combination diet/exercise/lifestyle approaches, individualized daily planning) (Figure 3)

aParticipation Rate = 37%bCompletion Rate = 30.4%

3 (3.0%)

6 (5.9%)

14 (13.9%)

22 (21.8%)

25 (24.8%)

51 (50.5%)

60

Pharmacy

Community group program

Counseling/groups from health insurance company

Other

Online program

Clinic, hospital-based, or other HCP program

Frequency and %0 10 20 30 40 50

Figure 3. Program utilization by type among current participantsa (n = 101).

aRespondents could have participated in more than one program.

aParticipants could select more than one form of support.