The Cost of Being a Caregiver

This month Mary concentrates on one of the most oft-overlooked stakeholders in healthcare, the caregiver, and asks: for someone so integral to patient adherence and support, is there more we can do to provide care for the carer?

There is now a concerted effort on the part of the leading pharma manufacturers to try to understand patient needs as much as the needs of physicians – aptly demonstrated by this quote from Petteri Jarkka, Customer Engagement Manager of Janssen:

"The most common reason for failure we've had is that we haven't been close enough to the customer to understand the need. That is the most common - in fact the only reason. When you do understand the need and you're able to provide the service, that's pretty much it."

Which is certainly good news for patients and a step in the right direction. But what about the needs of the caregiver? According to American charity, the National Alliance for Caregiving (, 29% of the US population have been identified as having a caregiving role. The caregiver, whether they be a spouse, parent, child or other person related to or friends with the patient, is often overlooked as a provider of frontline care. Unfortunately, their emotional, financial, practical needs and wellbeing can be insufficiently taken into account. Support can be limited and poorly formalised. Yet research shows they have a very important role in disease management and in determining the outcome and quality of life for the patient.

Studies such as that carried out for the Alliance for Aging Research amongst US oncologists, demonstrate that caregivers are believed to have a major impact on patients’ disease management. The study, conducted by Harris Interactive, revealed that 90% of oncologists felt that the caregiver has a moderate to major impact on the decision-making process, and 77 percent feel that older colon cancer patients experience better disease outcomes with a caregiver’s involvement. About 80 percent of oncologists surveyed say that they depend on caregivers somewhat or a great deal to act as an intermediary between themselves and the patient.*

As well as understanding the needs of the patient, big pharma has an opportunity to increase their understanding of and identify ways of supporting or providing channels of support to the caregiver, as a deliverer of frontline care.

Recent research projects we’ve been involved with have certainly identified unmet needs amongst caregivers. According to a study carried out in multiple myeloma, the carer’s journey during the patient’s treatment is one of isolation and apprehension. They report feeling scared and confused at diagnosis, worried and alone with nobody to talk or confide in during initial treatment and unsupported during the treatment review stages. One patient stated “I am a bit overlooked in all of this. The doctor never asks how I am. I know she is busy and can’t do everything, but it would be nice if she sometimes asked if I was OK“.

A patient from one of our studies said, “They offer a psychologist for the patient, but I’ve never heard anyone say it was also for the family."

Amongst other needs, carers’ identified the need for more forums where they could exchange information and share concerns, and were also looking for more honesty from the HCP as to the extent of the disease, side effects and the likely outcomes from transplants. In other research where we looked at how caregivers access support, we found that associations and advocacy groups are often seen as being a great help, and perceived to offer much more information and support than HCPs. Family and friends are often quoted as the most important source of emotional support, but the internet can also be very helpful with many citing facebook pages and disease websites.

Bearing in mind that carers are often old and may be unwell themselves, or they may be a sibling who has a full-time job and maybe a family of their own to take care of, the burden on them, both emotional and physical, can be very significant. The caregiver often has to take on responsibility for the majority of household chores and managing household finances, as well as looking after the patient in terms of washing them and dressing them, helping them eat, providing their medication, taking them to appointments and providing emotional support.  

A patient from one of our studies said, “They offer a psychologist for the patient, but I’ve never heard anyone say it was also for the family. It might help you continue to live your own life and not be completely swamped by the disease, because it takes up a big space in the house and in your life as a couple.”

The carer often has different priority needs at each stage of the patient journey. Our research revealed that the length of time to diagnosis for some diseases can mean a long period of uncertainty, fear and confusion, which some carers can find very difficult to cope with. At this stage, many carers, as well as patients, require emotional support and information to help them through this time. During the progression stage of the disease, caregivers need coping strategies, support groups and mechanisms of support. The carer can suffer intense pressure during time of relapses. If the patient is a child, then the caregiver needs to be able to help the child as they progress into adulthood. And if the patient does pass away, the caregiver will require support with grief, loss and being able to cope with living alone or without the patient.

Like patients, pharma needs to recognise that caregivers have different profile types, and in fact these profiles can often mirror that of the patient. So for example, the patient who is fighting the disease may also have a caregiver who mirrors this “fighting” behaviour and language. The depressed patient, who feels overwhelmed by their disease, may have a depressed caregiver. As they have begun to do with patients, so pharma needs to recognise the significant role of the caregiver in the patient journey and see how it can provide better support to the caregiver for improved outcomes.

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The Patient Summit 2014

Jun 17, 2014 - Jun 18, 2014, London

An integrated approach to patient-centric outcomes