Editor's note: The IASP Early Career Research Grant facilitates the development of young researchers just starting their careers as independent investigators.Here, we interviewSarah Luthy, one of the winners of the 2021 grant. (See our interview with Kaya Peerdeman, the other grant winner, here.)
Luthy is an assistant professor of pediatrics in the University of Cincinnati Department of Pediatrics, and an attending physician with the Division of Hospital Medicine at Cincinnati Children’s Hospital Medical Center. Here, Luthy chats with Lincoln Tracy, a research fellow at Monash University, Melbourne, Australia, to discuss her journey to pain research and her work with children who have severe neurological impairment. What follows is an edited transcript of their conversation.
What was your path to pain research?
In hindsight, I was incredibly naive heading into medical school. I wanted to be a doctor but I wasn’t prepared to make decisions about my career beyond that. At some point along the way, someone told me, “You need to pick a profession where you never get tired of reading about your patient populations, because there's always more to be mastered in the literature. Who are you willing to get up and out of bed and leave your family at two o'clock in the morning for? Because that's what you're going to have to do.”
After this, I realized that [what I was willing to get up in the middle of the night for] was children. That led me to pursue residency training in pediatrics. When I was in residency, more questions popped up like, "Do I want to have a long-term relationship with my patients? Do I want to do acute care? Do I want to do procedures?" I enjoyed working in the hospital, especially for kids with complex chronic diseases, where you see them frequently throughout the course of several admissions. I feel those children really benefit from some consistency of care. So that ultimately led me to choose additional fellowship training in pediatric hospital medicine.
My pediatric residency program had a robust pediatric palliative care program, but the institution where I did my pediatric hospital medicine fellowship did not. I saw the differences in care that could be provided to children with medical complexity by partnering with palliative care. That led me to pursue a second fellowship in pediatric hospice and palliative medicine. Now I provide care to otherwise healthy children with common diseases (e.g., infections), but I also provide inpatient care for children with severe neurological impairment across all phases of care, including medical hospitalizations, perioperative care, and end-of-life care.
With pediatric hospice and palliative medicine, pain and symptom management are a huge part of the work that we do, and pain is also a common problem for children during hospitalizations. Through my clinical work, as well as my research, I learned the way people perceive pain is very complex. The method we commonly use during hospitalization is a quantification of pain intensity, which doesn't fully capture the pain experience or other factors that people use to make decisions regarding pain treatment. I decided to pursue this particular path and patient population because there’s not a lot of data to guide our decision-making.
What is the aim of your research?
Pain can be divided into the affective experience, the sensory experience, and the cognitive experience. My primary hypothesis is that those different domains also influence how people perceive the pain of children with severe neurological impairment. With my research I’m hoping to figure out what specific factors drive decision-making around pain treatment for this patient population, which is at an increased risk for having severe pain, and for that pain being undertreated since many of them cannot verbally communicate their pain experiences and may have atypical pain behaviors. My objective for children with severe neurological impairment is to develop and validate comprehensive pain assessment methods that allow for equal treatment across all patients and encounters.
How will the IASP Early Career Research Grant help further your research?
The grant will help support the participatory qualitative work I'm doing with parents of children with severe neurological impairment. Parent advisors are going to be involved from the outset – helping to develop the interview guide, interpret the results – to ensure the work is clinically meaningful to this patient population.
For the study, we're going to ask parents to explain how they perceive their child's pain experience and how that subsequently drives their perceptions of their child's pain treatment needs. Hopefully this will be the start of a larger study that will ultimately engage other stakeholders, including clinicians, to develop a tool that we could subsequently validate in the future.
Why is it important to engage with parents from the very early stages of your research?
There's been an increasing push within the complex care population, both from a patient advocacy standpoint and from the perspectives of funders, to have better patient engagement. In this case, parent engagement in research will ultimately affect clinical outcomes, because the goal is to pursue research that improves patient care. Without having that patient voice, you could potentially miss the mark. We could develop a tool that would be very meaningful to clinicians, including nurses and doctors. But if it's not addressing the parents' perception of the children's pain and treatment needs, we could potentially end up developing a product that's not ultimately beneficial to the child.
What are some of the challenges in your line of research?
I tend to be a “glass half-full” person, so I think the lack of data represents a big opportunity for me. One of the challenges is trying to get people who aren't as familiar with this patient population to understand the degree of disability and the level of medical complexity that these children have. These are children who are typically technology dependent – meaning they require some form of medical technology to ensure their survival and well-being.
Another challenge is how heterogeneous this population is. What separates children with severe neurological impairment [from children with other neurological disorders] is their degree of disability and the associated medical complexity. There's a very significant difference between a child with mild cerebral palsy – who may need some assistance – but is able to meet his or her activities of daily living almost independently based on age, compared to a child who has a gross motor function classification level V and is not able to ambulate or potentially control their head movements. Historically, especially for health services researchers using large administrative databases, we've really been reliant on ICD codes, which may capture individual diagnoses. But it’s very challenging to differentiate the degree of disability based on these codes.
This is why I feel a more qualitative approach is essential for the type of research that I am conducting. It’s going to give us more insight and information than we have had previously. There are other qualitative studies that support the idea that parents of children with severe neurological impairment make very nuanced decisions when it comes to assessing their children's pain and then deciding what to do about it. Having studies dedicated to eliciting specific factors that we could eventually ask parents during hospitalizations for their child – we wouldn’t be able to get that information through any database.
How do you feel your clinical work has influenced your research, and vice versa?
As a hospitalist, I have a better understanding now of the systems through which care is administered and how complex any given shift can be. For example, if a child is hospitalized for surgery, you might have both a pediatrician and a surgeon seeing the child. Each of us is working with a resident, a fellow, an intern, medical students – and then there are the nurses and other members of the medical team on top of that. It’s challenging to provide consistent care and communication based on the sheer number of people involved in the child’s care from shift to shift.
The other thing that drives this is my experience as a palliative care clinician. The first question we typically ask a patient or a family in the initial consultation is, “Tell me about yourself.” But we’re not asking from a medical standpoint. Rather, we want to know about who you are as a person – who your child is as a human being rather than a list of diagnoses. The first time I asked, "Tell me about your child,” the parent gave me a list of their child's diagnoses. That’s not what I want. She said, "That's the first time anybody's ever asked me about my child as a person." You're coming at it from a different perspective and really trying to figure out who this person is, as well as the values and priorities of care for the patient from that individual perspective. That's given me more of an appreciation of how different variations may drive preferences for symptom management.
What does winning this IASP Early Career Research Grant mean to you?
It's huge. As an early career investigator, it’s quite validating. It is an endorsement of the work that you're doing. For me, especially pursuing qualitative research, I can't just pull stuff from a database, even to identify a patient population. So really starting from a qualitative perspective, I think, is the best way of building the foundation for what I eventually hope to develop. Having this funding is essential to take the next step forward – positioning myself to apply for a Career Development Award through the National Institutes of Health to continue to support this work moving forward.
I feel very lucky to have a job under the current circumstances, and then to get to work with the patients, families, and colleagues that I get to. Adding that extra piece of research onto the puzzle will hopefully help me take better care of my patients in a different way. I'm really looking forward to getting started with this project.
Lincoln Tracy is a researcher and freelance writer based in Melbourne, Australia. You can follow him on Twitter @lincolntracy.