Bozena J Katic, PhDc MPH1, Richard A. Jackson, MD2
Transcription
Bozena J Katic, PhDc MPH1, Richard A. Jackson, MD2
Patient-Centered Outcomes in Diabetes Care: A Study of A1C Awareness and Diabetes Distress Bozena J Katic, PhDc MPH , Richard A. Jackson, MD 1 2 For correspondence, email: [email protected] or [email protected] Abstract Patient-centered outcomes are increasingly recognized as an important component of diabetes (DM) care, and the daily fears and distress that accompany DM are important patient outcomes. We queried members of the online patient community, PatientsLikeMe, who had DM on the 17-item diabetes distress scale (DDS-17), along with questions on their A1C numbers and interpretation. DDS item, subscale and total scores were calculated. Summary statistics and bivariate statistics were computed on the sample; ANOVA and correlation coefficients were used on continuous/ordinal variables. A total of 594 members responded to the survey; 558 completed all survey measures. The majority of respondents had type 2 diabetes (88%), more than half (59%) were female, and were on average 52 years old. The overall distress score was 2.43 (SD: 1.01), indicating moderate diabetes distress among the sample. Actual A1C numbers were highly correlated to what people with diabetes (PWD) perceived their A1C number to mean (from very good to poor; r =0.70), and PWD reporting A1C numbers >7 had significantly higher mean distress scores compared to patients with A1C numbers in healthy ranges (2.72 vs. 2.12; p<0.0001). There were higher correlations between what PWD thought their A1C numbers meant and individual distress items than with their actual A1C numbers. Items causing significant distress, such as “feeling that I am failing at my diabetes regimen” or “ending up with complications, no matter what I do” (Means = 2.76 and 3.15, respectively) were strongly correlated with the perception that one’s A1C number meant they were doing poorly (r = 0.49 and r = 0.38.) Actual A1C number and patients’ interpretation of their number was significantly related to total distress score, and A1C interpretation was correlated to feelings of failure or doom regarding one’s diabetes care. Allowing PWD a more active role in choosing their DM regimen may address pervasive feelings of failure and complications and help decrease diabetes-related distress. Background Figure 1 Results Study Population Results Diabetes Distress Scale Emotional Burden Subscale 2884 memebers with DM invited to participate Regimen-related Distress Energy 200 Controls Complications Overwhelmed 2290 non-responses 594 responses (no response or opt-outs) Failing regimen 250 Angry 150 Reported A1C & perceived A1C Not confident Meal plan 200 Not motivated Meal plan Not motivated Not confident 150 100 Failing regimen 100 50 558 completes 50 36 incompletes 0 Not a problem Slight problem Moderate problem Somewhat serious problem Physician-related Distress Results Demographics 400 10% Very serious problem Doctor not knowledgeable No clear directions 350 Doctor not concerned 300 2% Serious problem No regular doctor Male Type 2 Type 1 Unsure 88% had Type 2 diabetes, 10% had Type 1 diabetes, and ~2% were unsure of the type of diabetes they had More than half of those who completed the DDS survey were female (59%) • Patient-centered outcomes are increasingly recognized as an important component of diabetes (DM) care Interpersonal Distress 300 Serious problem Very serious problem “My A1C number means...” Self care Diabetes difficult No support Objective • To assess diabetes distress among a real-world online patient sample • To identify differences between one’s reported A1C number and what they perceive their A1C number means about how they are doing with their diabetes management Methods • Members of an online patient community, Patientslikeme (PLM) with diabetes mellitus (DM) were invited to participate in a online survey on A1C awareness and diabetes distress • 2884 active members with DM were invited to participate • Active members were those who had logged on to the PLM website at least once in the previous 90 days Statistical Analyses • Summary statistics and bivariate statistics were computed on the sample of DM patients; the ANOVA procedure was used to compare group means on continuous variables • Overall F-statistic and tests for multiple comparisons were computed • Correlation coefficients were used to determine the correlation between continuous/ordinal variables © 2014 Copyright PatientsLikeMe. All rights reserved. 1 PatientsLikeMe, Cambridge, MA, USA; 2Joslin Diabetes Center, Boston, MA, USA (A1C number <=7.5) (A1C number= 7.0-8.5) <=7.5: 97% accuracy >7.5: 3% overestimated A1C <=7.0: 56% underestimated A1C 7.0-8.5: 39% accuracy Not a problem Slight problem Moderate problem Somewhat serious problem Serious problem Very serious problem 0 “I’m not doing ok” n=77 “I’m doing very poorly”n=46 (A1C number=8.0-9.5) (A1C number >=9.0) 8.0-9.5: 28% accuracy Not a problem Slight problem Moderate problem Somewhat serious problem Serious problem Very serious problem • Mean DDS total score: 2.43 (SD: 1.01), indicating moderate diabetes distress among the PLM population (n=594) • Variation on individual subscales: PLM patients with diabetes had the highest scores on emotional burden (2.74) and regimen-related distress (2.62), and the lowest scores on physician-related distress (1.84) and interpersonal distress (2.37) <=9.0: 46% underestimated A1C >=9.0: 54% accuracy >9.5: 18% overestimated A1C DDS score Correlation perceived A1C(r) Feeling that I will end up with long term complications, no matter what I do. 3.15 0.38 Feeling that I am not sticking closely enough to a good meal plan 2.96 0.33 Feeling that I am often failing with my diabetes regimen. 2.76 0.49 Feeling that diabetes controls my life. 2.72 0.45 Feeling that diabetes is taking up too much of my physical/mental energy each day. 2.70 0.40 Feeling overwhelmed by the demands of living with diabetes. 2.62 0.38 DDS Item* *r values for item response options ordered by levels of increasing agreement from 1 (strongly disagree) to 5 (strongly agree), such that stronger levels of agreement correspond to increasing distress • Items causing significant distress, such as “ending up with long-term complications, no matter what I do”, "feeling that I am not sticking closely enough to a good meal plan" or “feeling that I am often failing with my diabetes regimen” (DDS means: 3.15, 2.96 and 2.76 respectively) were correlated with the perception that one’s A1C number meant they were doing poorly (r = 0.38, 0.33 and 0.49 respectively.) • Items denoting doom and failure with diabetes day to day management, such as "feeling that diabetes controls my life" and "feeling that I am often failing with my diabetes regimen" were most strongly correlated with perceived A1C (r= 0.45 and r=0.49 respectively). • The correlation of perceived A1C to acceptable A1C ranges was not altogether accurate; many people thought they were doing worse than their reported A1C score would indicate — There was no difference in diabetes distress score among those who accurately and inaccurately interpreted their A1C, however. 200 N Results 150 Diabetes Distress and A1C Number 100 Correlation of Reported and Perceived A1C % DDS Score by Grouped A1C Number 8th grade Some HS/HS Some college College degree Post-grad • However, many people interpret their A1C as being worse than it is The majority of those who completed the survey report having ‘some college.’ DDS and A1C • Both reported A1C number and peoples’ perception of their number were significantly related to total distress score • However, perceived A1C correlated more closely with DDS than did reported A1C N 200 • Those people who reported not knowing what their number meant experienced significantly more distress than those who reported doing ‘very well’ or ‘okay’ 150 N 100 Very well OK Not OK Very poorly 20 21-27 and under 28-44 45-52 53-59 60-87 The largest number of completed surveys were contributed by those aged 60-87 years. Mean: 53; SD: 10.5 Accurate understanding of their A1C could lead to better diabetes control and less distress for people with diabetes. I don’t know 50 0 Conclusions A1C interpretation • There is a reasonable concordance between what people with diabetes think that there A1C means and what their reported A1C number is 50 0 Study Population “I’m doing ok” n=142 <8.0: 53% underestimated A1C • Patient centered outcomes include feelings about and perception of one’s illness • The daily fears and distress that accompany diabetes are important patient outcomes “I’m doing very well” n=81 >8.5: 5% overestimated A1C 50 50 Female Somewhat serious problem 100 100 0 Moderate problem Correlation of perceived A1C to acceptable A1C ranges 150 150 88% Slight problem • The emotional burden and regimen-related distress subscales were more highly correlated with perceived A1C than were the interpersonal distress and physician-related distress subscales 200 200 59% Not a problem 250 250 41% 0 • Item correlations for perceived A1C were stronger than for reported A1C across all subscales Item Correlations and Perceived A1C Perceived A1C and Reported A1C score are highly correlated (r= 0.702) Patients reporting A1C numbers >7 have significantly higher mean distress scores (2.72, SD 0.98) compared to patients with A1C numbers in healthy ranges (2.12, SD 0.86); p<0.0001 Disclosures • B. Katic is an employee of PatientsLikeMe and owns stocks/stock options in the company. • Dr. Jackson is an occasional consultant for PatientsLikeMe. www.patientslikeme.com