Patients’ Perceptions of the Financial Impact of Transplantation

1. Patients’ Perceptions of the Financial Impact of Transplantation Jeffrey Stoll, M.A. Post-Doctoral Associate University of Florida James R. Rodrigue, Ph.D. Professor and Director Center for Behavioral Health Research in Organ Transplantation and Donation University of Florida

2. Collaborators • Richard Howard, MD, Surgery • Alan Reed, MD, Surgery • Willem van der Werf, MD, Surgery • David Nelson, MD, Hepatology • James Hill, MD, Cardiology • Maher Baz, MD, Pulmonology • Bruce Kaplan, MD, Nephrology • Ian Jamieson, MBA, MHA, Transplant Center • Michelle Widows, PhD, Clinical & Health Psychology • Shawna Ehlers, PhD, Clinical & Health Psychology TFCA - Los Angeles

3. Objective • Review the findings from our comprehensive survey of adult transplant recipients • Financial impact • Employment • Health care services and utilization • General health and lifestyle issues TFCA - Los Angeles

4. Context • University of Florida / Shands Hospital • Large, comprehensive transplant program • High volume • Large rural population • Representative payer mix • Medicare payer mix is 15-20% higher than national average TFCA - Los Angeles

5. Context • Center for Behavioral Health Research in Organ Transplantation and Donation • Interdisciplinary research center • Two primary missions • Promote positive health outcomes among transplant patients and their families • Increase organ and tissue donation by encouraging, supporting, and advising behavioral health researchers in the field of transplantation TFCA - Los Angeles

6. Transplant RecipientLifestyle Survey • Program evaluation • Examine recipient outcomes across multiple domains • Gather recipient perceptions and concerns • Telephone interview (45”) • Survey tool TFCA - Los Angeles

7. Survey Tool • Main components of interview (70 questions) • Financial • Employment • Health care services and utilization • Medication use and adherence • General health • Substance use TFCA - Los Angeles

8. Sample Characteristics • 648 transplant recipients • 289 kidney, kidney-pancreas (45%) • 202 liver (31%) • 120 heart (18%) • 37 lung (6%) TFCA - Los Angeles

9. Sample Characteristics • Predominantly… • Middle-aged (53.4 + 11) • Male (62%) • White (83%; 11% Black, 3% Hispanic, 2% Asian) • Educated (68% college; 25% HS; 7% < HS) • Married (71%) TFCA - Los Angeles

10. Time Since Transplantation 33.2% 28.9% 19.3% 13.4% 5.2% TFCA - Los Angeles

11. Survey Results FINANCIAL

12. Financial ** * TFCA - Los Angeles

13. Financial ** * TFCA - Los Angeles

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15. Financial ** ** * TFCA - Los Angeles

16. Financial TFCA - Los Angeles

17. Financial • Post-transplant income level • 20% have more income than before transplant • 45% have less income than before transplant • 35% have about the same income as before transplant • Transplant contributed to significant financial problems (41%) • No “time since transplant” effect TFCA - Los Angeles

18. Financial • Logistic regression analysis showed that significant financial problems were predicted by… • Less education • Older age • Not working (current) • Higher body mass index TFCA - Los Angeles

19. Financial • In retrospect, adequately informed about out-of-pocket costs of transplantation? • Yes 78% • No 22% • In retrospect, would still go through with transplant if financial impact on family was known? • Yes 97% • No 3% (n = 20) TFCA - Los Angeles

20. Financial Implications • Many different sources of personal funding used for transplant-related expenses • Personal savings most commonly used • Credit card debt among transplant recipients is likely very substantial • Relatively small percentage of patients using patient assistance programs or community fund raising…why? • Medical bankruptcy implications? (6%, or n = 39) TFCA - Los Angeles

21. Financial Implications • Studies examining the direct and indirect out-of-pocket costs are needed • Indirect cost analyses must consider credit card and loan interest payments, lost earnings due to unemployment, lost future income due to retirement fund and investment account withdrawals TFCA - Los Angeles

22. Financial Implications • Role of transplant financial coordinators… • Focus on short- AND long-term costs • Financial planning and advice? • Education of patients, transplant professionals, and health policy experts TFCA - Los Angeles

23. Survey Results EMPLOYMENT

24. Employment • 32% employed • 1/3 part-time due to health reasons • 1/3 w/ different employer due to transplant • 68% not working • 52% medically disabled • 32% retired • 16% unemployed but medically able to work TFCA - Los Angeles

25. Employment • Medically able to work, but… • Will lose health benefits if employed • Cannot find job • Return to work rate for those medically able to work… • 74% (207 / 279) TFCA - Los Angeles

26. Employment • Return to work rate by transplant type • Higher than most published data • Kidney 30-60% • Liver 30-65% • Heart 45-65% • Lung 35-45% TFCA - Los Angeles

27. Employment • Logistic regression analysis showed return to work was predicted by… • Type of transplant (liver, kidney) • Longer time since transplant • Higher ratings of post-transplant health • Pre-transplant employment (year before transplant) • More education • Younger age • Male TFCA - Los Angeles

28. Employment • Illness and transplant contributed to… • Loss of employment opportunities (41%) • Loss of educational opportunities (10%) • Change in job plans (41%) TFCA - Los Angeles

29. Employment Implications • Most recipients desire to return to work • Are medically disabled truly disabled? • Need for vocational rehabilitation counseling in transplant programs • 20% of patients report need for such services • Univ of Tennessee – Memphis • NINR-funded study (superior return-to-work outcomes) TFCA - Los Angeles

30. Survey Results HEALTH CARE SERVICES AND UTILIZATION

31. Health Care Servicesand Utilization • Primary doctor or health care provider other than transplant physician • Yes 89% • No 11% • Hospitalized in last year (transplant-related) • None 56% • Once 21% • Twice 11% • 3 + 12% TFCA - Los Angeles

32. Health Care Servicesand Utilization • Health care coverage? • Yes 90% • No 10% (n = 65) • Reasons for no health care coverage • Premiums too expensive • Lost job (and insurance) • Insurance company refused coverage • Lost state or federal health care eligibility TFCA - Los Angeles

33. Health Care Servicesand Utilization • Transplant-related mental or behavioral health treatment services (post)? • Yes 15% • No 85% • Would have used such services if more readily available? • Yes 35% • No 65% TFCA - Los Angeles

34. Health Care Servicesand Utilization • Logistic regression analysis showed mental health treatment service use predicted by… • Older age • Lower ratings of post-transplant health • Not working • Mental health treatment before transplant TFCA - Los Angeles

35. Health Care Servicesand Utilization TFCA - Los Angeles

36. Health Care Servicesand Utilization TFCA - Los Angeles

37. Health Care Servicesand Utilization TFCA - Los Angeles

38. Health Care Servicesand Utilization Implications • Alarming 11% not being followed regularly by physician and 10% no longer without health care coverage • Need innovative strategies for delivering behavioral health services • Offer menu of available health services before and after transplant TFCA - Los Angeles

39. Survey Results MEDICATION USE AND ADHERENCE TFCA - Los Angeles

40. Medication Use and Adherence • Prescribed immunosuppression meds and taking it • Yes 97% • No 3% • In past month, forgot to take immunosuppression meds… • Never 76% • < 4 times 23% • > 4 times 1% • In past month, changed how meds were taken w/o checking with doctor… • Never 90% • < 4 times 9% • > 4 times 1% TFCA - Los Angeles

41. Medication Use and Adherence TFCA - Los Angeles

42. Medication Use and Adherence TFCA - Los Angeles

43. Medication Use and Adherence Implications • Low to moderate levels of nonadherence • Close monitoring of adherence and assessment of barriers to adherence • Important cost implications • Higher use of sleep, psychotropic, pain, and sexual functioning meds after transplant • Need to factor cost of these meds into financial counseling w/ patients TFCA - Los Angeles

44. Survey Results • GENERAL HEALTH TFCA - Los Angeles

45. General Health • Rating of health right before transplant • Excellent 3% • Very good 7% • Good 13% • Fair 19% • Poor 58% • Rating of current health, compared to months right before transplant (chart) TFCA - Los Angeles

46. General Health • Personal care needs • Eating • Bathing • Dressing • Getting around house • Routine needs • Household chores • Necessary business • Shopping TFCA - Los Angeles

47. General Health • Days in past month when physical and mental health were not good TFCA - Los Angeles

48. General Health • Days in past month when felt extremely fatigued and did not get enough sleep • 35% report symptoms associated with sleep apnea TFCA - Los Angeles

49. General Health • Physical activity (other than job) in past month, including running, walking for exercise, calisthenics, etc. • Yes 73% • No 27% • Days in past month (chart) TFCA - Los Angeles

50. General Health Implications • Perceptions of general health are favorable years after transplant • Personal care and routine needs require available and stable support system before and after transplant • Routine assessment of fatigue, sleep apnea TFCA - Los Angeles