Who cares about the caregivers? Measuring the impact of caregiving

Antoine Regnault, Research Director – Patient-Centered Outcomes
Khadra Benmedjahed, Associate Director – Patient-Centered Outcomes, Mapi, Lyon, France

The current taxonomy used for Clinical Outcome Assessements (COAs) includes Patient-Reported Outcome (PRO), Clinician-Reported Outcome (ClinRO), Observer-Reported Outcome (ObsRO) and Performance Outcome (PerfO) measures. Interestingly, this categorization does not cover the measures of impact of caregiving since these generally are self-reports but the responder is not a patient. A solution to bridge this gap and demonstrate that measurement in the caregiving setting is not fundamentally different is simply to consider caregivers as “hidden patients”. Nonetheless, the existence of this gap in the taxonomy of COAs illustrates that the question of impact on caregivers is still overlooked in health outcome research.

One of the key challenges of studying the impact on caregivers is the complexity of this notion. A lot of variability exists in the different caregiving situations: caregivers are not a homogenous group and the impact they experience, while generally devastating, is highly dependent on the context. The notion of caregiver is also deeply culturally sensitive, and the definition of, and values associated with, caregiving can differ importantly from one culture to the other.
Even if focusing only on “informal” caregivers (i.e., non-professional), the population of caregivers is very heterogeneous: it includes people as different as parents of a child with a rare disease, a spouse of a young adult with schizophrenia or a child of an old woman with dementia. It’s not even always a family member: it can be a friend or a neighbor. A common defining feature of caregivers probably lies in the specific relationship that the caregiver develops with the patient, forming a dyad.

Caring for a patient can have multifaceted impacts: physical, emotional, social, or financial. While caring for a patient can have some positive repercussions on an individual’s life, the burden associated with this role is often overwhelming and undermining deeply the caregiver’s quality of life. The impact of caregiving is a true societal challenge. This is particularly true (but not only) in Western countries, where the population gets older and health systems are subject to cost constraints that make health care professionals a rare resource. In this context, understanding the implications of health care decisions in terms of caregiver burden appears to be a relevant area for consideration.

While research on the measurement of caregiver burden has been conducted for several decades, and some legacy instruments are widely used (e.g., the Zarit Burden Interview), a lot remains to be done in this context, to gain a better understanding on the concept of impact of caregiving, and develop good measures of this concept. A first step may be to clearly recognize this need. And to do so, why not starting by completing the COA taxonomy by introducing a new concept that would put this question under the spotlight: Caregiver Outcome (CareO) measure?