Measuring Family HRQOL Spillover Effects Using QALYs Lisa A. Prosser, PhD University of Michigan CANS Special Topics Conference October 14, 2015

The authors have no conflicts to declare

Background Guidelines for cost-effectiveness analysis recommend inclusion of caregiver effects Caregiver effects can include 2 components: Time costs for informal care Reduction in quality of life (QOL) associated with having an ill family member Standard practice to include time costs but not effects on QOL (Goodrich et al., 2012)

Outline Brief review of spillover Measuring spillover using QALYs Future research topics

Household Decision Making Model Child Parents Siblings Grandparents Teachers Siblings

Household Decision Making Model Child Parents Siblings Grandparents Teachers Siblings

Measuring Family HRQOL Spillover Using Direct Elicitation Co-Authors: Eve Wittenberg, PhD, MPP, Harvard School of Public Health Kara Lamarand, MPH, University of Michigan Achamyeleh Gebremariam, MS, University of Michigan Funding Source: National Institute of Nursing Research (5R01NR011880) Source: Prosser et al. Med Decis Making. 2015;35(1):81-93

Objectives To measure the spillover effects on health-related quality of life (disutility) of having a family member with a chronic illness using direct health utility assessment methods To assess whether spillover varies with condition or relationship type

Methods National online survey of adults and adolescents: Experienced sample (ill family member), n= 1389 Community sample (hypothetical scenarios), n= 1205 Qualitative follow-up interviews, n=49 Conditions: Alzheimer’s disease, Arthritis, Cancer, Cerebral Palsy, Depression Ill family member: Child, Spouse, Parent Spillover valuation approach: Direct elicitation questions (standard gamble, rating scale)

Question Frames YOU Frame 1 Frame 2 YOUSPOUSE Frame 3 YOU SPOUSE

Sample Valuation Question – Frame 2 Rating Scale This line represents how someone would feel (physically and emotionally) living with Cancer. Think about the bottom of the line as being the same as dead (0). Think about the top of the line as having the best health you can imagine (100). Use the arrow to show at what point on this line you would put how YOU AND YOUR SPOUSE would feel, physically and emotionally, if your spouse was experiencing Cancer. You can move the arrow up and down until you get to the point on the line that represents how YOU AND YOUR SPOUSE would feel (physically and emotionally) if YOUR SPOUSE had Cancer Being Dead Best Health You Can Imagine

Sample Valuation Question – Frame 2 Standard Gamble This Think about YOUR SPOUSE having Cancer. Think about how YOUR AND YOUR SPOUSE feel, both physically and emotionally, about YOUR SPOUSE having Cancer. Now imagine that you were offered a choice: You could take this magic pill, which will instantly get rid of YOUR SPOUSE’S Cancer, but there is sometimes a chance of dying from a severe side effect. Remembering what your spouse’s condition is like, which would you choose, to take the pill or not take the pill? Take the pill: You take the pill, with a 50% chance of getting rid of YOUR SPOUSE’s condition, and 50% chance of a deadly side effect for YOU. Do not take the pill: YOU AND YOUR SPOUSE live with your spouse in this condition for the rest of your lives.

Spillover Disutility Frame 2 – Composite Disutility Frame 3 – Spillover Disutility

Analysis Plan Multivariate regression analyses: Standard gamble outcomes: GEE with negative binomial Rating scale outcomes: Linear regression Outcome variable: Frame 2 (Composite Disutility) Independent variables: Spillover Disutility (Frame 3) Condition Relationship Sociodemographic characteristics Confidence in responses Secondary analyses

Respondent Samples CharacteristicCommunit y n=1205 Experience d n=1389 Age: N/A 69% 31% 7% 57% 36% Condition valued: Alzheimer’s disease Arthritis Cancer Cerebral Palsy Depression 11% 20% 26% 16% 27% 6% 44% 12% 1% 36% Relationship: Child Spouse Parent 32% 33% 35% 8% 56% 36%

Experienced sample (n=1369) Community sample (n=1133) Standard Gamble Results Composite Spillover

Qualitative Interviews: Domains most affected by family spillover Somatic Health General emotional health Sadness/depression Worry/fear General mental health Stress/anxiety Psychological Health Caretaking General daily activities Finances Loss of old activities w/ill person Non-Health General physical health Physical pain Source: Wittenberg et al., The Patient, 2013.

Rating Scale Results Source: Lavelle et al., Applied Health Econ & Health Policy, 2014

Results Summary Spillover disutility small but measurable Can be assessed using direct utility assessment techniques Varies by condition Relationship between QOL and relationship type not consistently significant Level of caregiving not significant

Discussion Can spillover effects can be captured by traditional preference-based measures? Future research : Preferred approach: composite or individual? Aspects of conditions that identify when spillover should be considered?

Thank you Questions/comments: Lisa A. Prosser, Ph.D. CHEAR Unit, Division of General Pediatrics University of Michigan