New forms of dialysis, regenerative therapies, and even bioartificial kidneys are currently under development. But how do we ensure that these innovations will actually make their way to the patient? According to PhD researcher Esmee Driehuis, it doesn’t start in the laboratory, but in conversations with the people these innovations are intended to help.
In her PhD research, Esmee explored how patients and informal caregivers experience current kidney care. The key lesson she took from this work now shapes her new research: patients, informal caregivers, and healthcare professionals should be involved from the very start of the development process, not only once a treatment is ready for use. “If we want to improve kidney care, we need to start talking with patients and informal caregivers much earlier,” she says.
Around 1,700 people in the Netherlands start dialysis every year. When the kidneys fail, they can no longer do their job properly. Dialysis partly takes over their function by filtering waste products from the blood. For patients, this means not only undergoing an intensive treatment, but also making complex decisions about their care, adapting to major changes in daily life, and following a long list of medical recommendations.
Dialysis can take place in a hospital or dialysis centre, where patients typically spend four hours connected to a dialysis machine three times a week. It can also be carried out at home, and in some cases even overnight. The treatment is physically demanding, and many patients experience fatigue, headaches, or a general sense of exhaustion afterwards.
“Many people assume that one treatment must be better than another. But it’s not that simple,” Esmee explains. In the DOMESTICO study, she found that, on average, there was no difference in quality of life between patients receiving home dialysis and those treated in a hospital or dialysis centre. “This shows that there is no single best option,” she says. “The right choice depends on what fits the individual patient and their life.”
Her interviews with patients confirmed this. “I spoke with patients who initially felt that home dialysis was the right choice for them,” she says. “But when their circumstances changed, they switched to treatment in a dialysis centre. That illustrates just how personal these decisions are.”
According to Esmee, healthcare professionals should therefore avoid steering patients towards a single “best” treatment. Instead, they should work together with patients to find the option that best fits their individual needs and circumstances, rather than what the clinician believes is best.
“You can’t give the same information to everyone and expect it to work.”
Dialysis has a major impact on patients’ lives, but the challenges vary widely from person to person. Age, educational background, health literacy, social support, and coping style all play a role in how patients experience treatment.
“That means support also has to be personalised,” Esmee explains. “You can’t give the same information to a group of patients and expect everyone to understand it or use it in the same way. You have to work with each patient to figure out what works for them.”
One of the most striking findings from Esmee’s research concerned not patients, but their informal caregivers. “We saw that caregivers’ well-being declines during the first year of dialysis,” she says. “Their quality of life decreases, and they experience more depressive symptoms.”
She also found that caregivers often feel unheard, despite playing a crucial role in supporting their loved ones. “We know that when caregivers become overburdened, it also has negative consequences for the patient.” According to Esmee, support does not have to be complicated. “Sometimes it starts with something as simple as asking: How are you doing?”
Following her PhD, Esmee has joined Amsterdam UMC for a new research project. There, she is studying how patients, informal caregivers, and healthcare professionals can be better supported when new forms of dialysis care and innovative technologies, such as the NeoKidney, are introduced.
“Involving patients and caregivers early increases success in practice.”
A key challenge for researchers, she says, is ensuring that innovations are not only effective, but also usable in practice. “A new treatment or technology may prove highly effective,” she says, “but will patients feel confident enough to use it? And will healthcare professionals know how to explain it and integrate it into routine care?”
That is why she believes patients should be involved from the earliest stages of research. “By working together with patients, informal caregivers, and healthcare professionals from the outset, you gain a much better understanding of what they need. That greatly increases the chance that an innovation will actually be adopted in practice.”
To support this approach, Esmee completed a training programme at Pharos, the Dutch centre of expertise on health disparities and inclusive care. “I learned an enormous amount there,” she says. “The way you communicate, present information, or approach people has a huge impact on whether patients understand and trust it. You’re not always aware of that.”
Looking back, Esmee reflects positively on her PhD. “It was an incredibly valuable experience, and I really enjoyed it,” she says. Alongside her work at UMC Utrecht, she collaborated with researchers at Amsterdam UMC and completed epidemiology training in Leiden. “That made my PhD a very varied experience.”
Perhaps the most important lesson she takes with her is that good healthcare is about more than technology or clinical outcomes. “It’s essential to have meaningful conversations with patients, informal caregivers, and healthcare professionals,” she says. “Ultimately, good healthcare is something we create together.”
Esmee conducted her PhD research under the supervision of an interdisciplinary team consisting of Marianne Verhaar (UMC Utrecht), Friedo Dekker (Leiden University Medical Center), Alfonso Abrahams (UMC Utrecht), and Brigit van Jaarsveld (Amsterdam UMC). She successfully defended her PhD thesis called “Improving patient-centered dialysis care: Focusing on patients and their caregivers” on 30 June.
