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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.

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patients perceptions of the financial impact of transplantation

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

collaborators
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

objective
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

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context
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

context5
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

transplant recipient lifestyle survey
Transplant RecipientLifestyle Survey
  • Program evaluation
  • Examine recipient outcomes across multiple domains
  • Gather recipient perceptions and concerns
  • Telephone interview (45”)
  • Survey tool

TFCA - Los Angeles

survey tool
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

sample characteristics
Sample Characteristics
  • 648 transplant recipients
    • 289 kidney, kidney-pancreas (45%)
    • 202 liver (31%)
    • 120 heart (18%)
    • 37 lung (6%)

TFCA - Los Angeles

sample characteristics9
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

time since transplantation
Time Since Transplantation

33.2%

28.9%

19.3%

13.4%

5.2%

TFCA - Los Angeles

financial
Financial

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*

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financial13
Financial

**

*

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financial14
Financial

**

**

*

*

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financial15
Financial

**

**

*

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financial16
Financial

TFCA - Los Angeles

financial17
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

financial18
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

financial19
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

financial implications
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

financial implications21
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

financial implications22
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

survey results23

Survey Results

EMPLOYMENT

employment
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

employment25
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

employment26
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

employment27
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

employment28
Employment
  • Illness and transplant contributed to…
    • Loss of employment opportunities (41%)
    • Loss of educational opportunities (10%)
    • Change in job plans (41%)

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employment implications
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

survey results30

Survey Results

HEALTH CARE SERVICES

AND UTILIZATION

health care services and utilization
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

health care services and utilization32
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

health care services and utilization33
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

health care services and utilization34
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

health care services and utilization implications
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

slide39

Survey Results

MEDICATION USE

AND ADHERENCE

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slide40

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

slide43

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

slide44

Survey Results

  • GENERAL HEALTH

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slide45

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

slide46

General Health

  • Personal care needs
    • Eating
    • Bathing
    • Dressing
    • Getting around house
  • Routine needs
    • Household chores
    • Necessary business
    • Shopping

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slide47

General Health

  • Days in past month when physical and mental health were not good

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slide48

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

slide49

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

slide50

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

slide51

Final Thoughts

  • Limitations of the data
    • Single institution survey, limited generalization
    • Self-report data
  • Utility of the survey data
    • Program evaluation
    • Patients do not fully appreciate direct financial costs, especially long-term

TFCA - Los Angeles