Working on clinical trials in the home means I view firsthand the positive impact mobile nursing can have on patients and their families.
When a patient is living with a rare disease, they not only have to deal with the complexity of the disease itself and its impact on their health and wellbeing, but they often must also cope with a lack of treatment options available to improve their condition.
This means that when a research study becomes available, many patients will be very keen to take part, even if that means traveling long distances to receive the treatment at clinical research sites. If patients are traveling far and often, it can be extremely burdensome, both in terms of time and money, and can have a negative effect on their health and home life.
By allowing patients to be treated in their own home, we can reduce this burden and greatly improve the patient experience of participating in clinical research studies. We can look at our work providing mobile nursing for a clinical trial for a new Duchenne Muscular Dystrophy (DMD) drug to help demonstrate this.
What is Duchenne Muscular Dystrophy?
DMD is a rare genetic disorder that causes progressive muscle weakness and degeneration, leading to progressive muscle loss and function decline. It is the most common type of muscular dystrophy diagnosed in children and primarily affects boys. Globally, fewer than 10 in every 100,000 people assigned male at birth have DMD. The average life span for a patient living with DMD is 18 – 25 years.
Currently there is no cure for DMD. However, there are approved medicines that can help treat the condition and several studies looking into potential new drugs to improve the outcome of a patient living with DMD.
Our Work with Duchenne Muscular Dystrophy Patients
WEP’s clinical nurses have been working alongside various sites in the UK and the EU, to carry out weekly home nursing visits for pediatric patients participating in a trial for a potential new treatment for boys living with DMD.
This study involves long-term participation, with weekly visits where a skilled nurse takes center stage in providing crucial treatment. The study drug, delivered through an intravenous (IV) infusion, takes about three hours to administer, making the entire home visit around five hours.
The nurse administers the drug via the patient’s port or cannula while regularly checking on the patient to ensure they’re tolerating the treatment and that there are no adverse effects.
Throughout the visit, the nurse is the key figure, ensuring the patient is comfortable and that everything is running smoothly.
Breaking the Cycle of Travel and Disruption
For families with children living with DMD, traveling for treatment can be exhausting and disruptive. Before the shift to mobile nursing, many patients had to endure long trips to research sites, often requiring overnight stays
This could lead to missed school, time away from work, and disruptions to the family’s daily routine. The emotional and physical toll, as well as the cost involved in funding the travel and overnight stays, was significant for both the patient and their caregivers.
But with the introduction of home visits, these families experience a major relief. Nurses arrive at the patient’s home, bringing care directly to them. The patient is treated in a familiar and comforting environment, surrounded by their family.
This drastically reduces the stress associated with travel and medical appointments, promoting a calmer atmosphere that is conducive to better physical and emotional health.
A Parent’s Perspective: How Home Visits Have Transformed Our Lives
One parent of a child enrolled in the study shared her heartfelt thoughts about the impact of home visits on their lives:
“The introduction of home visits has truly transformed our lives. Weekly trips to the hospital used to mean early mornings and long days at the clinic, followed by exhausting journeys back home. Since the switch to home visits, my son has so much more energy. He’s able to go to school in the afternoons after his treatment, which means he’s not missing out on education. Having the same nurse each week has been such a relief. My son feels comfortable knowing exactly who’s coming, and the routine makes a huge difference for him.
The flexibility has also been a game-changer. We’ve been able to adjust appointments to fit around important family events, something we couldn’t always do with site visits due to bed management issues. We are so grateful for the comfort, convenience, and peace of mind that home visits bring.”
Conclusion
As someone working in this field, it’s incredibly rewarding to hear such positive feedback.
The flexibility, consistency, and comfort provided by mobile nursing has dramatically enhanced the experience for both patients and their families. For those navigating the challenges of rare diseases, these benefits are even more critical, offering not just medical care but also emotional and logistical relief.
By making care more accessible, we enable families to remain connected and present in their daily lives, which aligns perfectly with the goals of patient-centered care.
