Caregivers represent an integral part of patient care, yet their vital role is easily overlooked, and they often lack the informational support needed to provide optimal care for patients. For National Caregiver Month (November), Prime Patient explores how pharmaceutical companies can become “caregiver champions” by recognising the essential nature of carers’ roles and providing much needed educational support services (1). 

Caregivers are essential care partners 

Caregivers provide the bulk of the care patients receive; in Europe, the majority of care (80%) is provided by informal (unpaid) carers. This means around 52 million people (14.4% of people aged 18–74) provide long-term care to family members, friends or neighbours (2). This number is growing, and will likely continue to as the population ages; in the U.S., the number of caregivers increased by close to 25% between 2015 and 2020 (3). Each year in the U.S., unpaid caregiving is estimated to represent approximately $500 billion worth of ‘free’ care (4). 

Informal care can take many forms; caregivers often coordinate and attend medical appointments, help with medication, and respond to emergencies, while also providing essential emotional support (5). 

Caregivers represent a key demographic for Pharma(6). In a 2022 survey, 92% of caregivers reported either spearheading or taking an active part in their loved one’s conversations with doctors, and 87% were involved in provider discussions about conditions or treatments (3, 7). Caregivers can also be the primary medical decision makers, with that growing role as their loved one’s condition(s) progresses and self-management capacity declines (3, 8). Caregivers can help patients manage medication schedules and encourage treatment adherence; support with medication also relates to pharmacovigilance, as caregivers may respond to and report adverse events (8, 9).  

Overall, in light of their vital contributions to optimising use of pharmaceutical products and effecting positive patient outcomes, caregivers must not be overlooked by pharmaceutical companies (1). 

Pharma–caregiver engagement: from education to co-creation 

Caregivers experience significant unmet informational needs

Carers often take on their caregiving role suddenly, meaning they frequently feel underprepared and therefore have especially high educational and informational needs (10). Caregivers continue to seek information throughout their journey, even after many years of experience; research shows that those who consider themselves ‘experts’ are even more likely to be information seekers (5).  

Important areas of unmet training and educational needs reported by caregivers include:  

• Addressing their loved one’s everyday needs, and sudden changes in health (11) 
• Managing and administering medications (3) 
• Obtaining information on clinical trial (5) 
• Finding material aligned to the different stages of medical decision-making, in order to understand treatment and care options (5) 

Caregivers are not a uniform population, and unmet informational needs may vary depending on the condition(s) affecting the person/people they care for. (4). For instance, caregivers of people living with dementia might particularly struggle to cope emotionally with the impact of the disease on their loved one’s character and behaviours, and may therefore particularly benefit from resources addressing emotional aspects. (11). Alternatively, caregivers for those living with a rare disease may be particularly in need of information on different treatments that they can share with healthcare professionals, who often lack education on rare diseases (12).  

How can Pharma support caregivers with education? 

As caregivers become more confident in their knowledge of their loved one’s condition(s) and treatment, they are better able to act as a partner in the patient’s care (5). Therefore, failure to support caregivers with vital information may contribute to poor patient outcomes (e.g., avoidable hospitalisations) due to factors such as poor treatment management or awareness of which symptoms indicate disease progression. 

Pharma can play a critical role in providing educational resources for caregivers to complement the guidance on the use of a given pharmaceutical product. By leveraging existing expertise and strengths in partnering with patient organisations and creating informative materials, Pharma can be instrumental in not only signposting caregivers towards helpful resources and organisations (a valuable aspect given many carers do not know where to access support) but also developing dedicated tools to support them with their caring duties. 

Improved streamlining and coordination of resources via caregiver-specific platforms can make it easier for carers to find the information they need, helping to reduce caregivers’ information-seeking burden and maximise the impact of such materials (3, 7, 8, 13) Co-creating these resources together with patient/caregiver advisors and healthcare professionals helps ensure insights from lived experience enrich the final outputs, and that resources are disseminated through caregiver-preferred channels and therefore more likely to reach the target audience. Improved streamlining and coordination of resources via caregiver-specific platforms can make it easier for carers to find the information they need, helping to reduce caregivers’ information-seeking burden and maximise the impact of such materials. (3, 7, 8, 13) Co-creating these resources together with patient/caregiver advisors and healthcare professionals helps ensure insights from lived experience enrich the final outputs, and that resources are disseminated through caregiver-preferred channels and therefore more likely to reach the target audience.  

Virtual and asynchronous engagement is a great way to save time and accommodate caregivers’ busy schedules when co-creating these materials. 

In order to identify caregivers’ specific needs and create relevant resources, caregiver-centred tools such as the The Caregiver Intensity Index, developed by the ARCHANGELS™ platform are useful to assess the caregivers’ situation and redirect them to relevant resources. Upon completing the quiz, caregivers are given their ‘score’ reflecting the level of intensity of caregiving, and some buffers and drivers that may increase or decrease the intensity of caregiving, such as knowing what to expect and feeling prepared for most situations. This is a good example of a way to ensure the relevance and ease of access of the information, e.g., on educational websites developed by Pharma. 

Measuring the effectiveness of caregiver education initiatives 

Caregiver activation is defined as ‘the knowledge, skills, and confidence of the informal caregiver to provide care for the patient’. It entails coordinating medical care and treatment, preventing and solving the patient’s health problems, and collaborating with healthcare professionals (14).  

Research on relatives of patients with chronic conditions such as cancer or Alzheimer’s shows a significant proportion of caregivers exhibit low activation. Furthermore, family caregivers who are more activated experience lower caregiver burden, i.e., less psychological and physical distress and better overall health (14). This suggests an opportunity for Pharma to boost the quality of informal care (and therefore patient outcomes) via supporting caregiver activation. 

If the goal of an initiative is to empower caregivers to enhance the quality of the care they provide, caregiver activation can be measured to quantify how well this objective is met. Caregiver activation can be measured through the Caregiver Patient Activation Measure (C-PAM), which can be used to score caregiver activation on a ‘levels’ scale of 1–4 (See Box 1) (14). 

From Bakker et al. 2022 (14) 

From theory to practice 

A great example of Pharma engagement with caregivers is the Embracing Carers™ initiative from Merck, which was developed in collaboration with international carer organisations to raise awareness and visibility of caregiver needs. Among the findings, a report from this initiative highlighted caregivers’ unmet needs for information and training.  

Through the development of a caregiver well-being index, Embracing Caregivers™ found that most caregivers feel ‘invisible’, and require more recognition and support, especially since the pandemic. Some populations, such as women, younger carers, older carers, or those in the “sandwich generation” (i.e., caring for both children and ageing parents) face particular challenges and may therefore require targeted help. An important takeaway was that carers need more user-friendly information and education. Especially relevant to changes in healthcare following the birth of the COVID-19 pandemic, the survey revealed that 68% of caregivers required additional guidance and training on using telehealth resources.  

Conclusion 

• In light of their vital contributions to optimising use of pharmaceutical products and effecting positive patient outcomes, caregivers must not be overlooked by pharmaceutical companies. 
• As caregivers often struggle to find information and training to help them meet their caregiving responsibilities, the development of educational resources is an important way through which Pharma can meaningfully support caregivers. 
• Tools to measure caregiver activation are being developed that can help assess and guide future efforts. 
• The effectiveness of carer education materials can be assessed and refined via measurement of caregiver activation scores before and after accessing information resources.
• Initiatives from Pharma over the past few years show that collaborating with caregivers to address their information needs is a key component of patient-centric practice. 

• Prime Patient is a specialist consultancy delivering strategic patient engagement solutions to achieve a triple win for patients, Pharma, and society. For more information, get in touch via PatientEngagement@primeglobalpeople.com. 

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