INCREASING REPRESENTATION IN A MIXED-MODE QUALITY OF LIFE SURVEY OF MEDICARE ESRD BENEFICIARIES

Transcription

1 ACADEMY HEALTH 2018 INCREASING REPRESENTATION IN A MIXED-MODE QUALITY OF LIFE SURVEY OF MEDICARE ESRD BENEFICIARIES Speaker: Katherine Harris, Principal Research Scientist Team Members: Amy L. Djangali, Laney Light, Lily Trofimovich, Jacob Joseph- David, Frost Hubbard

2 ACADEMY HEALTH 2018 DISCLAIMER The data used to conduct this study was collected under Contract No. HHSM I Task Order No. HHSM-500-T0010. This presentation does not necessarily represent the official views of the U.S. Department of Health and Human Services, the Centers for Medicare & Medicaid Services

3 ACADEMY HEALTH 2018 OBJECTIVES Conduct a case-study of a multi-pronged approach for increasing the representativeness of responses to a quality of life survey administered to Medicare beneficiaries aligned to CMS s Comprehensive ESRD Care Model

4 ACADEMY HEALTH 2018 OVERVIEW Significance Study background Methods Findings Conclusions

5 SIGNIFICANCE KIDNEYS ARE VITAL ORGANS Filter waste and control the balance of water and salt in our blood Trigger bone marrow to make red blood cells Diabetes, high blood pressure, and other health problems can seriously harm kidneys

6 SIGNIFICANCE END-STAGE RENAL DISEASE IS THE FINAL STAGE OF CHRONIC KIDNEY DISEASE 10 percent of US adults have some form of kidney disease Roughly, 700,000 currently have ESRD and 125,000 develop it each year People with ESRD rely on dialysis to replace kidney functions Data Source: American Kidney Fund, 2015; Reference Table B.2(2) and special analyses, USRDS ESRD Database, 2017 Annual Data Report; US Census Bureau QuickFacts 2016.

7 SIGNIFICANCE DIALYSIS TREATMENT AFFECTS QUALITY OF LIFE Dialysis is extremely time consuming, requiring 10 to 48 hours per week, depending on setting and modality Fewer, shorter treatments each week--which are the most common in the US-- are associated with higher mortality and more side effects, including Exhaustion Depression Disorientation Hearing problems

8 SIGNIFICANCE ESRD AFFECTS MINORITIES IN THE US In 2016, roughly half of all people with ESRD were minorities A disproportionate share were African Americans Minority Group Share of US population Share of all ESRD patients Incident Prevalent Number of prevalent patients African Americans 13.3% 26.3% 30.8% 214,783 Hispanics 17.8% 14.8% 17.9% 113,565 Others 9.8% 6.4% 7.5% 51,531 Data Source: Reference Table B.2(2) and special analyses, USRDS ESRD Database, 2017 Annual Data Report; US Census Bureau QuickFacts Others include Asians, Pacific Islanders, Native Americans

9 SIGNIFICANCE GREATER REPRESENTATION OF MINORITIES IN QUALITY OF LIFE RESEARCH IS NEEDED Representative data promote the development of patient-centered approaches to reduce the burden of ESRD on minorities Post-stratification weights can improve representativeness of survey data. However, Accuracy: Large weights increase variance and likelihood of false negatives Validity: Bias can occur when a small number of atypical individuals are up-weighted to represent population subgroups

10 ACADEMY HEALTH 2018 OVERVIEW Significance Study background Methods Findings Conclusions

11 STUDY BACKGROUND IMPAQ ADMINISTERED QUALITY OF LIFE SURVEYS TO MEDICARE ESRD BENEFICIARIES IMPAQ administered the 36-item Kidney Disease Quality of Life questionnaire to Medicare beneficiaries treated by model participants in 2016 and 2017 Study data: Beneficiary lists or sampling frames 2016: N=13, : N=17,198 13% beneficiaries were in both sampling frames

12 STUDY BACKGROUND MULTI-MODAL SURVEY DESIGN IN 2016 Inbound Respondent Toll-Free Helpline Open Pre-notification letter 1 st Questionnaire mailing 2 nd Questionnaire mailing CATI follow-up with nonrespondents Personalized letter Infographic Toll-free Helpline number Option to complete survey via telephone Personalized cover letter Infographic Paper survey Postage paid return envelope Toll-free Helpline number Option to complete survey via telephone Personalized cover letter Infographic Paper survey Postage paid return envelope Toll-free Helpline number Option to complete survey via telephone CATI = Computer Assisted Telephone Interview Pre-notification, survey cover letter, and infographic were mailed in English and Spanish. Both offered the option to take the survey in Spanish Survey questionnaires were mailed in English only to all sample members Spanish questionnaires and bilingual CATI interviewers were available by active request to the toll-free helpline

13 BACKGROUND MINORITIES WERE UNDER REPRESENTED IN 2016

14 METHODS FIVE MODIFICATIONS TO SURVEY DESIGN TO PROMOTE REPRESENTATIVENESS IN 2017 Inbound Respondent Helpline Open Pre-notification letter 1 st Questionnaire mailing 2 nd Questionnaire mailing CATI follow-up with nonrespondents Personalized letter Infographic Toll-free Helpline number Option to complete survey via telephone Personalized letter Infographic Paper survey Postage paid return envelope Toll-free Helpline number Option to complete survey via telephone Personalized letter Infographic Paper survey Postage paid return envelope Toll-free Helpline number Option to complete survey via telephone Initiated calls with African Americans & Hispanics 2 weeks earlier Automatically assigned Hispanic cases bilingual interviewer Printed outgoing envelopes with a tickler in English and Spanish Printed outgoing envelopes with a tickler in English and Spanish Double-stuffed envelops containing English & Spanish questionnaires mailed to likely Spanish speakers based on predictive model

15 METHODS WHAT IS A TICKLER? Pre notification Survey Mailings 1 and 2

16 METHODS STATISTICAL ANALYSIS Pooled sampling frame data from 2016 and 2017 Estimated the magnitude and statistical significance of year-to-year changes response rates overall and for minorities Separate analyses by race and ethnicity Used SAS PROC GLIMMIX to account for correlation in the likelihood of responding among the subgroup in both sampling frames

17 FINDINGS RESPONSE RATES INCREASED BETWEEN 2016 AND 2017 Overall, response rate increased by 6 percentage points from 37% to 43% (p<.001) The magnitude of the percentage point increases did not differ statistically by racial category

18 FINDINGS RESPONSE RATES INCREASED RELATIVELY MORE FOR HISPANICS BETWEEN 2016 AND 2017 Response rate increase for Hispanics was significant and more than double that for Non-Hispanics (34% vs. 12%, p<.01) Majority of Hispanic completes remained in English

19 ACADEMY HEALTH 2018 LIMITATIONS A case study-not an experiment. As such, we can t infer causation Generalizability to other research contexts may be limited Leveraged CMS administrative data on beneficiary race and ethnicity to build our sampling frame Leveraged additional capacity created by having small number of interviewers available to field inbound Helpline calls

20 ACADEMY HEALTH 2018 CONCLUSIONS This case study showed that modest, low-cost modifications to survey design and operations were associated with greater representativeness Relatively large changes in response rates for Hispanics may reflect reduced the time and motivational barriers to responding in Spanish that were inherent in our 2016 survey design The apparent impact on English-speaking Hispanics of making Spanish survey materials more accessible more is worthy of additional study

21 ACADEMY HEALTH 2018 INTERESTED IN QUALITY OF LIFE FOR PEOPLE WITH ESRD? Psychometric Properties of a Quality of Life Survey Instrument in a Sample of ESRD Beneficiaries Monday, June 25 8:00 AM 9:15 AM Exhibit Hall 4AB Poster Board Number B-317 IMPAQ Presenter & Author: Laney Light

22 FINDINGS REPRESENTATIVENESS OF RESPONDENTS INCREASED FROM 2016 TO 2017