Growing up, and into research
Meghan Pancucci was just 11 years old when she first met Dr. Michelle Batthish, a pediatric rheumatologist and researcher at Hamilton Health Sciences (HHS) McMaster Children’s Hospital (MCH). Years later, the two would reconnect when Batthish would become Pancucci’s mentor for research projects aimed at helping young juvenile arthritis patients transition into the adult hospital system.
“Having someone like Meghan with lived experience involved in our research is incredibly helpful because it really pushes us to design better studies so that we can recruit more patients.” — Dr. Michelle Batthish, pediatric rheumatologist
“When I was little I was diagnosed with juvenile idiopathic arthritis by Dr. Batthish, who was my pediatric rheumatologist at McMaster Children’s Hospital,” says Pancucci. She was cared for by Batthish for seven years, until she turned 18. As a children’s hospital, MCH cares for kids until the age of 18.
Juvenile idiopathic arthritis can affect any joint and is the most common type of arthritis in children and teens. Idiopathic means the cause isn’t known and it showed up suddenly. In Canada, three in every 1,000 kids are affected. The condition can cause swelling, pain and stiffness in joints and some kids have additional associated complications such as growth issues, joint damage and eye problems.
Pancucci, now 22, completed an undergraduate degree in health sciences at McMaster University and is now in her first year of the university’s two-year physician assistant program. Back in her second year of undergraduate studies, she reached out to Batthish regarding opportunities to take part in research for various school projects through the MCH pediatric rheumatology team. Pancucci is still involved in research with Batthish, now as a patient advisor.
From patient to patient researcher:
Falling through the cracks
Once young people turn 18, they receive care in the adult hospital system. “But teens don’t magically become adults the day they turn 18,” says Batthish. “On paper they’re adults but their brains are still developing.”
Meanwhile, 18 is an age that brings major life changes that could include college or university, moving away from home or entering the workforce. Not surprisingly, studies have found that young adults with chronic conditions fall through the cracks, missing medical appointments and not taking their medications for months and even years. As a result, chronic diseases return, often bringing debilitating pain, disability and even landing some young adults in emergency departments.
For many young people with juvenile arthritis, it means managing their health without the support of family or the children’s hospital. This includes being responsible for regular injections or daily oral medication at a time when their social lives are much busier and more complicated, and parents are less involved. It can also be a time when they experiment with alcohol, drugs and vaping which can lead to complications when combined with certain medications.
Canada-wide, it’s estimated that up to half of young people with juvenile arthritis experience inadequate follow-ups when they switch from a children’s hospital to adult care. That’s in part because they may not have developed the planning and judgement skills needed to manage their care in an adult health-care system.
A foot in both worlds
To help prevent teens from falling through the cracks, MCH offers a pediatric rheumatology transition clinic to help them prepare for entering the adult system. Several studies are currently underway at MCH, looking at ways to improve the transition experience for teen patients with chronic illnesses, and their families.
The pediatric rheumatology transition clinic helps patients aged 14 to 17 learn to become increasingly independent in managing their disease as they transition to adulthood. This involves booking their own appointments, attending check-ups on their own, and taking medication without reminders from parents.
The pediatric and adult rheumatology teams work together to provide transition support for patients as they move from MCH to adult care at the Boris Clinic, located in the same building as MCH at McMaster University Medical Centre.
“I had a very positive experience moving to the adult system because of the transition clinic at McMaster Children’s Hospital,” says Pancucci, who also lived at home while in university so she would have additional support from her parents.
Through the eyes of a teen
For her fourth-year undergraduate thesis, Pancucci examined how living with a chronic condition affects a young person’s mental health. “I remember how frustrating it was for me to have to quit sports and not be a regular kid,” she recalls.
Mental health is an area of research that Batthish’s team continues to study. “We’re looking at the mental health burden of young adults with juvenile arthritis, and instituting routine screening for mental health in this population so we can better address their concerns,” Batthish says.
Other studies currently underway at MCH include the role parents play in helping their children transition to adult care, and the role a transition coach could play. Transition coaches are health-care professionals who work one-on-one with teen patients to help them prepare for the adult system.
Pancucci’s contributions to Batthish’s research include reviewing study materials through a young adult’s eyes. For example, Pancucci has reviewed study questionnaires to ensure they’re engaging and easy to complete for young patients and their families.
“I look at these questionnaires as if I were a teenage patient,” says Pancucci. “Would I understand what’s being asked? Would I want to take the time to fill this out? After all, the more patients and families who complete these questionnaires, the better our data is to complete meaningful research.”
Batthish agrees that having this type of patient perspective on the research team means better results. “Having someone like Meghan with lived experience involved in our research is incredibly helpful because it really pushes us to design better studies so that we can recruit more patients,” Batthish says.
Engaging, age-appropriate surveys and questionnaires can also help keep patients involved in research, sometimes for years. “Strong patient engagement is incredibly important for longitudinal studies, where we follow the same group of people over time to look for any changes in their health,” says Batthish. “By providing a patient perspective, Meghan’s input has helped a great deal.”
