I was recently interviewed by Edwin Porras, an ambitious and inquisitive physical therapy student, who asked me about my experiences with injury, pain, and physical therapy. He is eager to spread the word to patients and clinicians alike about the importance of allowing patients to tell their full story. Ironically, I think I’ve had more opportunities to tell my full story since I’ve recovered from persistent pain than I did the entire 6+ years I was in pain! The interview, which was first published here on March 13, 2018, appears in full below. – Cheryl
Missed Opportunities?: A Patient Interview with Dr. Cheryl Keller Capone, PhD
“Movement competency and variety are key to building resilience and confidence in one’s body.” -Dr. Cheryl Keller Capone
According to the CDC, in the year 2016 approximately 84% of the adults had some sort of contact with a health care professional. For kids, that number shoots to 93%. Additionally, some physician visits are much, much shorter than expected and there is some data that suggest patients cannot tell their story without being interrupted. On average, patients are interrupted by the 18 second mark (this varies depending on the source). These numbers side by side reflect an overarching concept in physical therapy and healthcare as whole: There are hundreds – if not thousands- of missed opportunities to build meaningful relationships each day. The average 18 second interruption is specifically for physicians but attacking physical therapy colleagues is not the goal. Instead, these statistics are a serious call to arms for all providers to actively listen to a patient’s story.
There are a ton of awesome resources specifically for physios ranging from business, soft-skills, and clinical examinations. More recently there have been leaders in the physical therapy industry also pivoting to provide joint patient-provider resources to learn from one another. So, in the spirit of this culture shift, I’ve chosen to shut up and listen to scientist and patient Cheryl Keller Capone, PhD give her input regarding patient care in PT and her perspective on the profession.
Q: Can you please tell us a little about who you are and what you do?
A: I am an Associate Research Professor at Penn State University. I am currently using genomics to study blood cell development with an overall research goal of understanding gene regulation in mammals. In total, I have 24 years of scientific research experience in several different areas, including muscle development, neuroscience, and mitochondrial DNA forensics.
In addition to my research, I’m also a certified personal trainer through the National Academy of Sports Medicine and enjoy working with clients on a part time basis.
Q: What do you prefer to be called? Dr. Cheryl Keller Capone? Dr. CKC? Run CKC?
A: Most of the time, I just go by Cheryl, but I do have multiple aliases! In scientific settings, I actually go by Cheryl Keller or Dr. Keller, as my PhD and all of my scientific publications are under the name of Keller. When I got married, it was still pretty common for women to change their name, so at the time I chose to add Capone to the end of my name, making my full name Cheryl Keller Capone, which I do use for my SoMe handles. Nowadays, it is more common for women to keep their name, and if I were getting married today, I would not change it.
Q: I see on Twitter that you are a very physically active person. If you had to rank your top 3 favorite physical activities, what would they be?
A: I primarily identify as a runner. I started running when I was 13 and ran competitively in high school and college. More recently, I took up road cycling and swimming and have competed in a couple of triathlons. That said, I would not include swimming in my top 3! I’m not a very good swimmer (at least not yet), and still feel like I’m struggling in the water. It’s a highly technical sport and takes a very long time to master, especially as an adult. So, for the third sport, I think I’d have to choose hiking. There are a lot of great places to hike in central Pennsylvania.
Q: Which do you recommend everybody try at least once and why?
A: I think people should try to participate in as many different sports and activities as possible. Movement competency and variety are key to building resilience and confidence in one’s body.
Q: In as many or few words as you like, can you please tell us your story as a physical therapy patient and where it has lead you to today?
A: I have a long history of pain and injuries, including a mild neck injury and a repetitive lumbar hyperextension back injury dating back to adolescence. Although I experienced rather severe back pain during my teen years, I did not receive any treatment as the doctor who examined me at the time said that it was probably just a muscle spasm and that it would get better. Unfortunately, it took a very long time to improve, and I later discovered that I have a spondylolisthesis of L4/L5 with evidence of a bilateral pars defect. As a result, I’ve experienced extension based back pain as well as some limitation of cervical rotation, for most of my life. That being said, I did not let that stop me, and went on to run competitively in both high school and college.
I continued to run after college but experienced a variety of lower leg injuries and pain over the years that sometimes forced me to take some time off. Overall, though, nothing too severe. Then in 2009, I began experiencing some bilateral pain and intermittent tingling in my feet that developed after I stopped using my orthotics for running. I continued to run through these symptoms and eventually developed posterior tibial tendonitis in my left foot. I faithfully completed my home exercise program and “graduated” from physical therapy, except that my symptoms did not really improve. Instead, things got much worse. Over the course of the next few years, I not only had pain in my feet, but I also developed many other symptoms, including pain in my back, constant tingling in my feet and one hand, two tibial stress fractures, stress incontinence, vertigo, nausea, heart palpitations, difficulty walking, and every time I tried to sleep on my left side, my entire leg would go completely numb.
I saw a variety of clinicians, including several orthopedists and physical therapists, each of whom had a very different opinion as to what was going on. Each provider focused on only a subset of my pain/symptoms (some of which didn’t arise until late in the game) rather than looking at the big picture, and each recommended a different treatment plan. And when the treatment didn’t work, I was told that there was “nothing wrong” with me.
In hindsight, I needed someone to help me calm my nervous system and teach me how to regain control of my body. The problem was that I could not find anyone who could (knew how?) to help me.
Finally, in the summer of 2013, I finally happened across a compassionate physical therapist who helped me calm my nervous system and taught me about movement and strength training. I slowly began to improve and began to see the light at the end of the tunnel. Truth be told, despite tremendous progress and improvement, I eventually plateaued and was still not yet back to running. In hindsight, I just needed a fresh pair of eyes and sought help from an insightful chiropractor who identified a few more pieces of the puzzle and facilitated my return to running. It was not an easy road, but I’m very grateful for these two caring clinicians who helped me and taught me the skills I needed to get control of my life
Q: What was your initial impression of the physical therapy profession?
A: I first went to physical therapy when I was 16 for some knee pain associated with running. At the time, it was diagnosed as “runner’s knee”, and the condition did initially improve with physical therapy, but to be honest I struggled with that same knee pain (as well as back and hip pain) on and off for many years, suggesting that the underlying issues were not addressed. As we now know, “runner’s knee” is more of a collection of symptoms, rather than a specific diagnosis, and much of the treatment I received was heavily focused on knee biomechanics, rather than considering me as a whole person, including my history of extension based back pain.
Q: What is your opinion of the profession now?
A: I strongly believe in physical therapy as a means for addressing a variety of musculoskeletal problems. But I also think there is a very wide range of skill and clinical expertise among physical therapists, and it can sometimes be difficult to find the right therapist for the right person. There are also still a lot of ineffective, non-evidenced based therapies being used to treat patients, and that does a disservice to the patients and the profession as a whole.
On the other side of the coin, many people harbor a lot of preconceived notions and false beliefs about pain and injury, and that can often lead to treatment “failure” and dissatisfaction of physical therapy as a treatment option.
Overall, given the recent movement toward a biopsychosocial model as a treatment framework, I’m very optimistic about the future of physical therapy. But I also think there is a still a lot of work to do, in terms of educating both physical therapists and patients alike, to move the profession forward.
Q: Where/how can the career of physical therapy improve from a scientist’s perspective?
A: Physical therapy should be evidence-based, and physical therapists should always be reading the literature to keep up to date with what’s current in the field. But it’s also worth keeping mind that theories evolve as new evidence becomes available, so it’s important to view the new evidence with a wide lens and a historical perspective. Further, it’s also worth noting that, just because something is published, doesn’t mean the evidence is of high quality. Learn to read and think critically. With that in mind, however, given individual biological variation and unique life experiences, I am also a proponent of N=1, in which each patient is an individual, a single case study.
Q: …From a patient’s perspective?
A: Take the time to really listen to your patient’s full story. Then treat the person in front of you.
Q: Because I follow you on Twitter, I am aware of (and greatly appreciate) how passionate you are about practicality and the critical importance of science in decision making within all realms of life. How does this scientific method reconcile with patient values in the physical therapy clinic?
A: We all suffer from confirmation bias and tend to disregard evidence that does not support our own opinion or preconceived notions. It’s part of the human condition. But it often prevents us from growing and making positive changes in our lives. Working to recognize our own biases, as well as the values and biases of others, can help build a stronger therapeutic alliance between clinician and patient.
Q: If you could give advice to a patient in musculoskeletal pain, what would you say?
A: A turning point in my own recovery was when I finally learned that I could not rely on anyone to fix me…that I needed to own my pain and my own recovery. I, alone, was responsible for my own rehabilitation and return to an active life. It’s a realization that can be both empowering and scary at the same time, but it’s also a path toward independence and resilience.
There aren’t many words to follow powerful responses from a patient like the ones above, so I won’t even try. Let’s continue to move the needle forward on patient care.
Thanks for reading,