Estimating informal care inputs associated with EQ-5D for use in economic evaluation

Abstract

ObjectivesThis paper estimates informal care need using the health of the patient. The results can be used to predict changes in informal care associated with changes in the health of the patient measured using EQ-5D. MethodsData was used from a prospective survey of inpatients containing 59,512 complete responses across 44,494 individuals. The number of days a friend or relative has needed to provide care or help with normal activities in the last six weeks was estimated using the health of the patient measured by EQ-5D, ICD chapter and other health and sociodemographic data. A variety of different regression models were estimated that are appropriate for the distribution of the informal care dependent variable, which has large spikes at 0 (zero informal care) and 42 days (informal care every day). ResultsThe preferred model that most accurately predicts the distribution of the data is the zero-inflated negative binomial with variable inflation. The results indicate that improving the health of the patient reduces informal care need. The relationship between ICD chapter and informal care need is not as clear. ConclusionsThe preferred zero-inflated negative binomial with variable inflation model can be used to predict changes in informal care associated with changes in the health of the patient measured using EQ-5Dand these results can be applied to existing datasets to inform economic evaluation. Limitations include recall bias and response bias of the informal care data, and restrictions of the dataset to exclude some patient groups.

Estimating Informal Caregiving Time from Patient EQ-5D Data: The Informal CARE Effect (iCARE) Tool

“…To overcome some of these challenges, studies have proposed accounting for informal care on the cost side. For example, some studies [ 3 , 32 ] have developed statistical models for predicting the number of days of care using patients’ health data. However, using the number of days of care can only provide a general indication of the real informal care costs, since the actual time commitment on each day remains unknown.…”

Predicting Productivity Losses from Health-Related Quality of Life Using Patient Data

“…These allow productivity losses associated with HRQoL to be estimated for inclusion in economic evaluation using a wider societal perspective. These estimates of productivity losses can be obtained for a dataset including the EQ-5D of patients alongside sociodemographic characteristics, and using the same methodology informal care need can also be estimated using the models reported in Rowen et al [20]. The use of large patient datasets in the estimation of the models reported here has the benefit that the models are based on HRQoL from a number of conditions.…”

Economic Studies in Motor Neurone Disease: A Systematic Methodological Review

“…With the prospect of new treatments for MND on the horizon, including the neuroprotective agent edaravone, tyrosine kinase inhibitor masitinib and gene and stem cell therapies [59][60][61][62] . While there are recognised challenges relating to the measurement of lost productivity by both patients and their caregivers [63][64][65], the importance is more so in MND as patients have a higher earning potential than the national averages [36], owing to the average age of onset peaking around the mid-fifties and the fact that the disease presents more in men [1].…”

“…Alternative methods of direct utility estimation, such as time trade off or the use of choice-based techniques such as the Discrete Choice Experiment (DCE), have hitherto not featured in MND studies. MND has important and significant impacts on informal caregivers, such as family members [71-73].While there is debate concerning the inclusion of the QoL effects on carers in economic evaluations, and methodological challenges relating to the measurement, valuation and incorporation of QoL impacts on carers[63][64][65], the lack of consideration for carer utilities in MND is apparent. Further challenges include consideration of how carers' productivity is affected by the disease, especially in the latter stages of the condition when more help is required.…”