A New Approach for Modeling the Complexity of the Impact of Caring Using the Family and Caregiving Effects
Author(s)
Becky Pennington, MSc1, Sarah Davis, MPhys1, Holly Louise Cranmer, BSc, MSc2.
1SCHARR, School of Medicine and Population Health, University of Sheffield, Sheffield, United Kingdom, 2Cranmer Consultancy Ltd, Sheffield, United Kingdom.
1SCHARR, School of Medicine and Population Health, University of Sheffield, Sheffield, United Kingdom, 2Cranmer Consultancy Ltd, Sheffield, United Kingdom.
OBJECTIVES: Commonly used methods for modelling the health-related quality of life (HRQoL) of unpaid carers/caregivers implicitly assume that the impact of caregiving is either wholly positive (including carer utilities while the patient is alive) or negative (including carer disutilities while the patient is alive). Our objectives were to develop a method that allowed a trade-off between the HRQoL benefit of improved patient survival and outcomes and the negative HRQoL impact of increased caregiving burden and explore the impact of this.
METHODS: We developed a new approach, rooted in the established concepts of the “family effect” (caring about) and the “caregiving effect” (caring for). Numerical estimates for the family and caregiving effects were available from the literature, based on analysis of patient-carer dyads. We identified three case studies, Duchenne Muscular Dystrophy (DMD), Spinal Muscular Atrophy (SMA) and Alzheimer’s Disease (AD), where patient and carer (dis)utilities and disaggregated life years were available. We combined these with a literature-derived family effect multiplier (the coefficient linking patient and carer HRQoL) to estimate both effects. We assumed patients had one carer for their lifetime.
RESULTS: The incremental patient quality-adjusted life years (QALYs) from the DMD, SMA and AD interventions were 11.67, 10.89 and 0.34, respectively. Including carer utilities while patients were alive led to incremental carer QALYs of 5.70, 13.14 and 0.28, and including carer disutilities led to incremental carer QALYs of -0.62, -0.40 and 0.09. Using the family and caregiving effects led to incremental carer QALYs of 1.15, 1.48 and 0.046. In these case studies, the positive family effect outweighed the negative caregiving effect.
CONCLUSIONS: Our approach modelled a small positive impact on carer QALYs for each intervention, whereas existing approaches had a larger and sometimes negative impact. Our approach can currently be used with existing data; further research should analyse the family and caregiving effects across conditions.
METHODS: We developed a new approach, rooted in the established concepts of the “family effect” (caring about) and the “caregiving effect” (caring for). Numerical estimates for the family and caregiving effects were available from the literature, based on analysis of patient-carer dyads. We identified three case studies, Duchenne Muscular Dystrophy (DMD), Spinal Muscular Atrophy (SMA) and Alzheimer’s Disease (AD), where patient and carer (dis)utilities and disaggregated life years were available. We combined these with a literature-derived family effect multiplier (the coefficient linking patient and carer HRQoL) to estimate both effects. We assumed patients had one carer for their lifetime.
RESULTS: The incremental patient quality-adjusted life years (QALYs) from the DMD, SMA and AD interventions were 11.67, 10.89 and 0.34, respectively. Including carer utilities while patients were alive led to incremental carer QALYs of 5.70, 13.14 and 0.28, and including carer disutilities led to incremental carer QALYs of -0.62, -0.40 and 0.09. Using the family and caregiving effects led to incremental carer QALYs of 1.15, 1.48 and 0.046. In these case studies, the positive family effect outweighed the negative caregiving effect.
CONCLUSIONS: Our approach modelled a small positive impact on carer QALYs for each intervention, whereas existing approaches had a larger and sometimes negative impact. Our approach can currently be used with existing data; further research should analyse the family and caregiving effects across conditions.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
HTA10
Topic
Economic Evaluation, Health Technology Assessment, Methodological & Statistical Research
Topic Subcategory
Decision & Deliberative Processes
Disease
Neurological Disorders, No Additional Disease & Conditions/Specialized Treatment Areas, Pediatrics, Rare & Orphan Diseases