Informal care is generally thought to mean unpaid care, typically provided to elderly and dependent persons by those they have a social relationship with. Such as a spouse, parent, child or other relative. As well as maybe a neighbour or close friend.

It is an important aspect of Health Technology Assessment as the person providing informal care may spend many hours each week on a range of tasks such helping people wash, eat and take medication. However informal care is often overlooked when developing health economic models and value propositions.

Two recent papers from Value in Health evaluated the effects of Myocardinal Infarction (Heart Attack) and Atrial Fibrillation on informal care givers. Finding with both these common conditions carers commonly provide 20-33 hours of informal care per week. Such a large commitment to support a loved one can make them anxious, feel alone and deteriorate relationships within their families.

Because informal care does not involve monetarily compensated tasks it is important to value time spent caring using nonmarket techniques. Two commonly used methods value either the price of an equivalent service as a proxy good or alternatively foregone activity as an opportunity cost. However both these methods ignore the value of the relationship between carer and recipient.

 Some studies also used preference techniques, such as discrete choice experiments (DCEs) and Time Trade Off studies (TTOs), to understand how much carers would wish to be compensated to provide more care in specific situations. A recent pilot study also evaluated the impact of including carer information in TTOs,  by investigate whether participants implicitly consider the impact of a health state on others who would have to care for them. Finding that the wellbeing of the carer was a concern for many participants with some evidence for this impacting their quantitative responses.

The National Institute for Health and Care Excellence (NICE), provides a reference case which specifies economic evaluations should include direct health effects for patients and carers where relevant. However evaluation of the 414 NICE evaluations since the organisation’s founding in 2000 showed inclusion of Health Related Quality of Life for carers is uncommon. Limited to few studies that do not necessarily conform to the reference case. With no systematic consideration of when this issue is relevant.

  • Only 12/414 (3%) of NICE Technology Assessments (TAs) included carer HRQL in cost-utility analyses.
  • Half theses TAs involved pediatric populations or combined pediatric and adult populations.
  • 8 were for interventions to treat Multiple Sclerosis.
  • The 4 others covered Alzheimer's disease, Juvenile idiopathic arthritis (JIA), Atopic dermatitis, and Myelofibrosis.

4/8 (50%) of NICE Highly Specialised Technology Assessments (HSTs) did cover informal care. These were all in pediatric populations: mucopolysaccharidosis type IVa (MPS IVa), Duchenne muscular dystrophy (DMD), adenonsine deaminase deficiency-severe combined immunodeficiency (ADA-SCID) and X-linked hypophosphatemia (XLH).

11 appraisals also discussed carer HRQL but did not include it in cost-utility analyses including a further 7 in pediatric populations. (plaque psoriasis in children, JIA, asthma (3), non–small-cell lung cancer, cystic fibrosis, alcohol consumption, chronic hepatitis C in children, neuroblastoma, and pediatric-onset hypophosphatasia).

In the developing world methods and practice of economic evaluation of social care interventions are rarely studied. However analysis of Colombia, India, Malawi, Thailand, Uganda and Zambia found in Low-and-Middle-Income Countries (LMICs), social care is almost completely the responsibility of the family and there are few publicly funded social care services.

For example, in Thailand only 0.75 of the Thai elderly have paid caregivers as their main caregivers though around 9% of the elderly live alone. Thai HTA guidelines do recommend such informal care costs be included as a form of direct non-medical costs when conducting cost-effectiveness from a societal perspective. However Thailand, along with India, are the only LMICs whose guidelines stress the importance to account for cross-sector impacts beyond narrower views of health. 

HCD Economics has already conducted analysis of caregiving with our Burden of Illness studies. Finding with Hemophilia that parents frequently spend 12-20 hours per week caring for Hemophilia relate needs. With around a quarter of them stating that they have lost work as a result, especially when they have more than one child with Hemophilia. In our Huntington’s disease survey, stress and exhaustion were the most reported feelings experienced by caregivers. In our Progressive familial intrahepatic cholestasis (PFIC) study, a third of caregivers reported missing an average 52 workdays in 12 months. With over a third who were previously in paid employment pausing work for an average of 2.8 years.

HCD believes it is very important to properly account for informal care when developing your value story.  We have large experience in burden of illness studies, preference research and economic modelling which can all be applied to evaluate issues from various perspectives. For further information and an informal chat please email: