Patient Centricity News

Care partners’ roles are often informal and unpaid, but they play an essential role in the healthcare ecosystem as they support loved ones through their diagnosis and treatment. They go by many names and titles – carers, caregivers, parents, siblings, spouses, children, and more – and their responsibilities range from driving to medical appointments to administering medications to providing personal and general emotional support. They’re often a patient’s biggest advocate and can have a major impact on their treatment, care, and health outcomes.

While care partners may not have a serious medical condition themselves, they may often feel overburdened and experience emotional, financial, and physical strain. Though global communities recognize caregivers’ key role in supporting patients, they too often receive little help from their communities, policymakers, and healthcare teams.

Almost 25% of care partners live with mental health challenges

Findings from Astellas research, which involved consulting more than 300 patients with bladder cancer and their care partners, revealed the impact that a lack of support can have on the care partners themselves. According to the report, almost one quarter (23%) of care partners live with a diagnosed mental health condition, adding pressure to their responsibilities. In addition, 42% of care partners reported feeling lonelier than before the person’s diagnosis, and 36% resent the impact the disease has had on their life. Nearly all the care partners surveyed identified at least one activity they’re less likely to do now that they have caring responsibilities.

Global differences in care partner support

Support for care partners varies by country and region, according to a report by the International Alliance of Carer Organizations. In Australia, for instance, care partners are recognized by the government under the Carer Recognition Act, and they receive biweekly financial aid to assist with the costs associated with their caregiving roles. In Canada, the Young Caregivers Association offers support to children and families, including in-school programming to help young people feel less alone in their responsibilities. In Portugal, informal carers are recognized by law, giving them a set of rights and supporting measures to improve their work-life balance and provide social protection. Many countries, however, lack this type of legislative, economic, and workplace recognition of care partners while, in other cases, COVID-19 has interrupted in-progress support initiatives. Worldwide, people acknowledge that care partners need more support. So who cares for the carers?

Today, there are many opportunities to improve care partners’ experiences and to better incorporate their insights into the development of medical products. We spoke with four care partners – including parent and spouse care partners – to learn more about their unique roles and challenges, the support they receive, and how they partner with Astellas to extend support to others in similar caregiving circumstances. 

The parent perspective

D’Anna Holmes is mom to Mason, her teenage son who has battled multiple conditions throughout his life: a tracheostomy, a rare cancer, and, most recently, an immune cell deficiency that significantly hampers his immune function. D'Anna is also the Associate Director of Patient Partnerships at Astellas.

Parent care partners, D’Anna explained, face many decision-making responsibilities. “I’m like any other mom, I’d do anything for my son. But it’s hard to know what the right medical decision could be for your child,” she said. In addition to choosing the care their child will receive, parents must also navigate school and social choices to ensure their kids are safe, happy, and learning along with other kids their age. 

Marta Campos, Coordinator at APIR, the Portuguese Association for Renal Failure, is the mother of a son born with kidney failure. She echoes some of D’Anna’s sentiments, explaining that parents are also responsible for administering at-home care for their children. From the time her son was an infant, Marta and her husband administered their son’s peritoneal dialysis from home. “Adults can do it themselves, but since my son was a baby, of course, we did it for him,” she shared. 

Aside from their caring responsibilities, D’Anna and Marta both feel their most important job is to ensure their kids can enjoy childhood and feel prepared for life as adults. 

“My main goal is to meet his basic needs, but also to make him believe that he is a child, not just a sick person or a patient,” Marta said. “Yes, he had his struggles that we needed to take care of, but he also needed to learn, to play, to go to the park, and have fun like the other kids do.” 

“The goal is for my son to be as independent as possible,” D’Anna shared. “He is such a unique individual despite all his health challenges. He played the drums in a band at his birthday party. He loves to read, and he's a movie fanatic. He has all these wonderful gifts and talents. In figuring out what his path will be moving forward, we know it will just look a little different from the average kid.”

Caring for your spouse

Shortly after Colin White and his wife Chikoyo’s wedding, Chikoyo was diagnosed with end-stage kidney disease. For the last 20 years, Colin has supported her healthcare journey while also being the National Advocacy and Projects Manager at the Irish Kidney Association (IKA) for almost 18 years.

“I always say to my wife, ‘You didn't choose to bring kidney failure into our relationship.’ It's a third party that neither of us appreciate, but we have to tolerate it,” Colin said.

Jacqueline Daly and her husband Mike are both cancer survivors. Jacqueline cared for Mike through his prostate cancer diagnosis and now holds several patient advocacy roles: as Co-Founder and Director of Services at the East Galway and Midlands Cancer Support Centre in Ireland and as a member of the Let’s Talk Prostate Cancer Expert Group.

Both Colin and Jacqueline acknowledge the challenges that health issues and caring responsibilities can bring to a marriage, not only to the person themselves, but to their families and loved ones. Colin has witnessed marriages dissolve as care needs evolve. Meanwhile, Jacqueline noted a need for better preparation to care for her husband early in his diagnosis, with an emphasis on the emotional and sexual health of patients and their partners. 

“Prostate cancer is a couple’s disease, and my biggest wish would have been better information and education on how to care for Mike and how to get access to the right treatment and services, at the right time,” Jacqueline shared.

Understanding the need for better care partner support

The care partners we spoke with agreed that they could use more support in their roles. While most people recognize and sympathize with the difficulties patients face while experiencing poor health, care partners are less often considered. 

“In the early days after my wife was diagnosed, everyone always asked how she was doing. One day, someone asked how I was, and I burst into tears,” Colin shared. “It’s important to remember that everyone has a story. No one is an island.”

D’Anna emphasized the unique challenges families in the rare disease community face, as it’s difficult to find others to relate to. “There are no large communities in place for the types of conditions my son has,” D’Anna said. “While advocacy groups provide so much support and comfort to patients and care partners, we’re spread all over the world, and getting together in person is challenging for families who have kids with health issues.” 

Why times of transition are a focal point

Some of the especially challenging times in a care partner’s life are times of transition. When the medical condition of the person they care for changes, as their need for support increases or decreases, or when environmental shifts such as global pandemics emerge, care partners may require additional support adapting to an evolving role. 

For parents, Marta explained, a big transition occurs when their child matures and begins taking on their own medical care. She described feeling anxious, but also very proud, as her son began to manage his own medications and doctors’ appointments. 

Colin’s caregiving role has shifted recently as his wife’s condition has worsened. “That's a new identity for me now,” he said. “Rather than just supporting her or being able to work around the odd hospital appointment, things have changed dramatically as she requires full-time care. If I’m not home, we need to make sure someone else is there to help her move around the house.”  

To help support care partners’ mental health, Colin stressed the importance of access to counselling. The IKA offers counselling to all the patients and families it supports, which Colin feels is a step in the right direction.

Jacqueline called for policy changes and increased awareness of the ways serious illness impacts patients’ and care partners’ lives. “We need to start with policymakers educating themselves about the disease and how it impacts patients. Then, we need better resources so patients, partners, and families can be better informed about prevention, diagnosis, treatment, and ongoing care,” Jacqueline said. 

Finding community through helping others

All of the interviewees we spoke with are leaders in their respective disease and patient communities, even if they didn’t start in the field before their loved one’s diagnosis. This work helps them find support through helping others. 

Colin, for example, runs a sports program for people who have had organ transplants or are on dialysis, empowering them to socialize with others in similar situations. After dealing with challenges in her own patient and care partner journey, Jacqueline wanted to make things better for others in similar situations. “My experience motivated me to set up a local center for people with cancer, offering a wide range of education and interventions for patients before, during, and beyond their treatment,” she said.  

For D’Anna, her career is an extension of her work as a care partner, and she’s found mutual benefit in her partnerships with other patients and their families. “I found my support in the work that I do professionally,” D’Anna said. “Even if we don’t deal with the same condition, I’m still able to connect with those individuals. I don’t have to smile and pretend that everything is okay, I can sit and talk or cry with them. That's where I found most of my support, my tribe.”

Marta has found a similar experience in working with APIR. “I’ve found that, to this day, when I give support, I get support,” Marta said. “I’ve learned a lot from talking to other people. It helps to normalize things that happen to our family.” The most important thing she’s picked up from these conversations with others in the kidney disease community? “You’re not alone, and there are other people that are going through the same thing as you.” 

Astellas’ commitment to reducing caregiver burden

Astellas partners with patient organizations around the world to better understand the needs of patients and their care partners. Through initiatives to gain awareness of patients’ needs and provide practical support, Astellas strives to put patients and their care partners at the center of medical product development. For example, Astellas interviewed patient advocacy groups in bladder cancer and learned that many care partners lack preparation to know what to expect in their new caregiving role.

As a result, we are creating the Bladder Cancer Carer Handbook, which explains what it means to be a care partner, how it can feel to take on these responsibilities, and how care partners can look after their own physical and mental health to preserve their wellbeing. Depending on the impact of the handbook, Astellas may proceed with similar initiatives in therapeutic areas such as gastric cancer, acute myeloid leukemia, and chronic kidney disease.
D’Anna reports that she’s felt heard by the company in her time as an Astellas team member. “Astellas is very receptive to keeping a focus on what's most impactful for patients and their families,” D’Anna said. “If I share a personal experience in a meeting – whether that’s mine or that of another patient or family – that is at the top of the pyramid in terms of priority.”

Astellas recognizes the need for better care partner support and is committed to reducing the burdens they carry. By collaborating with and listening to patients and their care teams, we strive to incorporate their perspectives into every element of our work. 

At Astellas, our goal is not only to develop novel treatments, but to make sure patients’ and care partners’ needs are met. We look forward to future partnership opportunities with care partners to strengthen our understanding of their needs in the future.

In part one, Anthony and Paul discuss the evolution of patient centricity in the pharmaceutical industry and specifically within Astellas. Anthony explains why integrating the patient voice through the entire lifecycle of a medicine is so important and how Astellas has embedded patient centricity into its infrastructure, culture and values.

Part two sees Anthony and Paul talk about how Astellas is achieving its mission to create truly patient-focused medicines development and delivery. Listening, learning and collaborating with patient communities to bring their voice into the organisation so that everyone at Astellas can better understand the patient and caregiver perspective.

In part three, Anthony explains how Astellas is integrating patient centricity into the organisation and the culture to promote a better understanding of patients’ needs. He also discusses how patient centricity can help create more diverse clinical trials to overcome barriers to healthcare and improve health equity.

People’s health outcomes are determined by many factors beyond the medicines and treatments they take. Genetics, behaviour, social circumstances, environmental and physical influences all play a role. By improving our understanding of all health determinants, we can better help the patient and care partner community through, and beyond, the medicines that we produce.

If you are physically sick, you would in most instances go to a doctor and seek treatment, but when it comes to your mental health, it’s not always a simple process to seek help. Yet mental health plays a significant role in a person’s overall wellbeing and can affect how someone lives with and manages their condition. 

Juggling the daily impact of a diagnosed or undiagnosed health condition puts considerable pressure on a person. For some diagnoses, people may also have the worry of facing stigma or fear of being ostracised. This is made worse when health inequity means people are unable to access the healthcare or personal support they need within their community. And the problem has been compounded by the COVID-19 pandemic, which has caused additional stress and isolation. All of which can cloud a person’s judgement, sap their energy, and undermine their ability to remain engaged and be their own best advocate during an often-complex treatment journey.

The Behavioral Science Consortium and Patient Partnerships team at Astellas

The Behavioral Science Consortium (BSC) and the Patient Partnerships team are two teams that fall under the umbrella of the Patient Centricity division at Astellas. The teams are dedicated to the Astellas patient centricity vision of supporting the development of innovative health solutions through a deep understanding of patient experience, medical needs, and behavioural drivers of care. 

The mission of the Astellas BSC is to develop a better understanding of patient behaviours and interactions in the real world to inform treatment decisions, identify ways to improve people’s healthcare experience, and enable more complete understanding of the journey people are on.

“We are dedicated to understanding and improving the patient experience, by studying the effect of individual, environmental and cultural factors, and life experiences that impact people who are managing chronic conditions and other illnesses,” says Lisa Mattle, Senior Director and Head of the BSC.

The BSC enlists an esteemed, multi-disciplinary team of global professionals, each of whom brings diverse expertise and perspective to the table. Members of the BSC faculty include epidemiologists, sociologists, anthropologists, behavioural economists, psychologists and more. 

One of the BSC faculty members, Kyoko Nomura, Chair Professor of the Department of Environmental Health Science and Public Health at Akita University, Japan, explains: “Before we encourage patients to begin active treatments, we must first understand why they face difficulties. We know that health behaviour is influenced by culture, diversity, gender, social and environmental factors, which is why the BSC members come from different backgrounds, cultures, countries, and educational backgrounds. This diverse representation brings a multi-faceted lens to bear on all of our efforts.”

The Patient Partnerships team is dedicated to working alongside patients, care partners and patient advocacy organizations to improve the overall healthcare outcomes for patients and care partners. 

“Whether you are a family member worried about a loved one or a patient anxious about what the future holds, everyone has a story to tell, and the Patient Partnerships team is listening, learning and collaborating with patients, families and care partners to understand what truly matters to them and change the way Astellas develops medicines,” said Doug Noland, Executive Director of the Patient Partnerships team. 

Working in close partnerships with the advocacy community, the team connects patients and care partners with Astellas scientists and employees to help truly understand what matters to them. These insights and experiences shape the way Astellas develops medicines, whether these are in the early discovery phase, in clinical trials or already in use in the real world.

Understanding and supporting the patient and caregiver community

The BSC is working to understand cultural factors, attitudes, beliefs, and biases in different countries since these factors impact how patients and caregivers behave when faced with healthcare diagnoses and decisions. “We are hoping that, in addition to supporting people and their loved ones, the insights can also inform how the Astellas team designs outreach campaigns, raises awareness, decreases stigma and promotes education regarding a given condition,” says Lisa.

Similarly, traditional gender roles in some societies may impact a patient’s experience once they have been diagnosed with an illness. For instance, Kyoko notes that in Japan and other countries, women traditionally take on the role of primary caregiver for their families, so when they are diagnosed themselves with chronic or life-threatening conditions, they may not have adequate support without active intervention.

When it comes to women’s health, “it is really important to understand and appreciate that there are many different cultural factors that shape women’s identities and experiences with regard to health and wellness,” adds Kyoko. For example, the Astellas team working in women’s health is looking at vasomotor symptoms (VMS), such as hot flushes and night sweats, in women who are going through menopause. They uncovered that VMS are often not discussed during physician visits, so many women who are impacted by VMS are left untreated. The BSC assisted with the development of interview guides for research to help understand why healthcare providers and patients don’t talk about VMS. The BSC made sure these interview guides were informed by behavioural and social science so they really addressed the core emotions, attitudes and biases that may prevent women from seeking or receiving treatment for their VMS.

Meanwhile, certain types of illnesses impact patients of different age groups, so the experiences and burdens on caregivers varies across the generations. In some cases, the caregiver group may include primarily the patient’s parents, but in other cases it may be the patient’s grown children, leading to a role reversal (children now caring for parents). The BSC is working to better understand how for example cultural factors may impact both patients and caregivers in such a situation.  

“It’s important to realise that caregivers are only human, too — they are people with jobs and families and lives of their own. Having to provide emotional, physical, and logistical support for someone else on top of that is challenging. It places additional demands on the caregivers’ time, energy, and mental health, and can make them feel overwhelmed and frustrated, sometimes even angry or resentful,” says Lisa. “Over time, the burden can take a toll both on the caregiver and on their relationship with the patient. If we want to ensure optimal care and outcomes for the patient, caregiver needs have to be addressed as well.”

Translating insights into action

The insights that the BSC and Patient Partnerships teams uncover are translated into tangible action in a variety of ways. 

The BSC does this in three core ways: First, through its behavioural science curriculum, which provides internal education and resources, such as webinars, workshops, infographics and live summits with the BSC faculty on a particular topic. Second, through its behavioural science projects, where the group works with other teams in response to a particular challenge, leveraging the expertise of the BSC faculty and social science investigations to develop and answer customised behaviour-related research questions or points of view. Finally, through behavioural science collaborations, where the BSC thought partners with practitioners to develop a deep understanding of the impact of specific behaviours and beliefs on real-world patients.

“One interactive workshop we facilitated helped colleagues to learn about cognitive biases and apply what they learned to their work. They can now assess how cognitive biases may play a role in their area of work, and identify ways in which to counteract them,” says Lisa. 

Patient advocacy organisations know better than anyone the importance of mental health to the communities they serve. The Patient Partnerships team is working with these groups to support their efforts with the patient and caregiver community and to learn from their experiences. 

The Patient Partnerships team recently completed a large piece of insights research looking at stigma in bladder cancer. These insights were made possible by working with patients and care partners in multiple countries and will be used by teams within Astellas to help deliver medicines that better meet patients’ needs. Insights from participants showed the huge impact that the disadvantages associated with living with a disease can have on a person’s mental health and in turn how these change the way that people managed their condition. It also showed that talking to others in the same situation helps enormously and that support for mental health is key. 

One in four care partners suffer mental health issues. In bladder cancer, as in many other conditions, carers are unprepared for the life change of caring for someone. Support for care partners, practical but also mental is important, as they can feel just as lonely and isolated, if not more, than the person with the condition. Astellas is now looking into how it might provide emotional or psychological support for the patient community to ensure that people living with bladder cancer receive the best care possible. 

Together the BSC and the Patient Partnerships team enable Astellas to better understand how behaviour and patients’ mental wellbeing can impact overall health outcomes. Ultimately educating, supporting and working with all stakeholders that play a role in a person’s health journey will bring great benefits to patients.