Taking a deep dive into the patient experience for brachial plexus injuries

Earlier this year, we published a paper in the Journal of Hand Surgery that systematically evaluated and thematically analyzed the content of 2 discussion boards for brachial plexus injury (BPI). I wanted to write a little bit here about the origin of the study, as well as some of the follow-up that will result from the study.

One of my earlier research interests during residency was trying to understand the quality and readability of information on the internet for hand surgery conditions. As a doctor, I know that my patients are often looking up information about their conditions on the internet - either trying to get a diagnose or get more information about the treatment (I do the same when I am a patient!) 

I know that it can be frustrating to look for good quality information on the internet, even for common conditions. I imagine that it can be really challenging for patients newly diagnosed with brachial plexus injuries (and their families) to find reliable information. Many patients encounter discussion boards (such as the American UBPN.org and the UK's Traumatic BPI group) that have a remarkable amount of information. Anticipating that many patients and families would spend time on these websites consuming information and sharing their experience with others, we thought it would be helpful to systematically examine these websites. Basically, we wanted to see what our patients would be interested in learning and what type of information is being shared on these sites. 

Marie Morris (at the time, a Wash U medical student and now one of our orthopedic surgery residents) pulled posts from UBPN.org and the Traumatic BPI discussion boards from the 2015 calendar year. Using established methods for thematic analysis and qualitative research, Marie and I then looked through each post to determine common themes. Here are the themes we came up with: 

This was an incredibly educational experience for me - as a BPI surgeon, reading through all of these posts and culling them together gave me a deeper understanding of what my patients are experiencing and what they are reading. This knowledge has helped me empathize with patients and try to explain the injury and treatments in a relatable and understandable manner. 

So what now? One of the secondary goals of this project was to develop a list of subjects/topics that I can write about for this blog. In the coming weeks and months, I hope to go through these themes in blog posts. The content that we found on these discussion boards was largely high quality and understandable (kudos to UBPN and Traumatic BPI!), so I hope that providing some content from the BPI surgeon perspective will be helpful to patients and families worldwide.

Christopher J. Dy, MD MPH

My Bio at Washington University Orthopedics

dyc@wudosis.wustl.edu 

World Travels in Nerve Surgery - Chang Gung Memorial Hospital (Taipei, Taiwan)

This post is the first in a long time! I have an early New Year's resolution to write/blog more, so no better time to start than now...

When I joined the faculty at Washington University School of Medicine, I was fortunate enough to receive a commitment from the Department of Orthopaedic Surgery to support international travel to centers of excellence in brachial plexus and peripheral nerve surgery. Without a doubt, one of the first places that came to mind for a visit was Chang Gung Memorial Hospital in Taiwan. Chang Gung Memorial Hospital (CGMH)'s reputation as a center of excellence for microsurgery is known throughout the world. I specifically wanted to learn from Professor David Chuang, an internationally-renowned expert in brachial plexus reconstruction. Professor Chuang has completed more than 2500 brachial plexus reconstructions in his career, has published over 100 papers and chapters, and continues to show an impressive eagerness to advance the practice of nerve surgery. 

With support from my family and my partners, I embarked on a trip half-way around the world to Taipei. After a couple of days to adjust to the time difference, I began working with Professor Chuang and his team of junior faculty, fellows, and residents. I was welcomed warmly and immediately integrated into the team. During my 2 weeks at CGMH, I spent time with the team in the clinic and in the operating room. In the clinic, I was able to see the short-term and long-term results of Professor Chuang's brachial plexus reconstructions, which are without a doubt very impressive. In the operating room, I observed Professor Chuang and his team perform a number of brachial plexus explorations and reconstructions, using strategies and techniques perfected over a 30+ year career in microsurgery. I greatly enjoyed my conversations with him about his preoperative planning, intraoperative decision-making, and specific surgical techniques (many of which he has developed and disseminated to microsurgeons across the world). There is nothing quite like learning the "Tips and Tricks" directly from a master surgeon!

In many ways, the trip felt short - but even in this brief time, I learned an incredible amount that I will bring back to my practice and my patients at Washington University in St. Louis. I am tremendously grateful to Professor Chuang and his team at CGMH, as well as to my family and department for supporting my trip. I return to St. Louis brimming with excitement from an intellectual perspective (and probably a couple pounds heavier...) 

I am excited to share (and apply) this knowledge with my partners, our trainees, and our patients. I am hopeful that all future trips will be as beneficial as my trip to CGMH in Taiwan!

Christopher J. Dy, MD MPH

My Bio at Washington University Orthopedics

dyc@wudosis.wustl.edu

Are patients satisfied after brachial plexus surgery?

This post continues a series of posts dedicated to exploring the patient experience after brachial plexus injury.

The scoring system that we (as surgeons) often use to grade outcomes after brachial plexus surgeons is flawed: although we grade muscles in a way that is supposed to be standardized, there is A LOT of inter- and intra-observer variability in grading muscle strength. It would make a lot more sense for us to center our perspective on outcomes that are based on the patient experience. For example, were you satisfied after the surgery? Would you do it again? Is your overall function improved? Unfortunately, only 4 of the 88 studies that we looked at in our systematic review included a measure of function and only 3 studies reported patient satisfaction (J Hand Surg 2015).

We have a long way to go with regard to reporting patient-centered outcomes in brachial plexus surgery, but here is what I have been able to learn from what is reported in our literature:

Thomas Kretschmer's group from Germany (Neurosurgery 2009) reported that 87% of patients who underwent BPI surgery were satisfied with their outcome, with 83% saying that they would have surgery again. This is despite functional scores (as measured by the DASH) reflecting a tremendous amount of residual disability. An article from Susan Mackinnon's and David Kline's groups (from the plastic surgery division here at Wash U and from the neurosurgery department at LSU, respectively; J Hand Surg 1997) showed similar high marks (78%) for satisfaction after BPI surgery, with a similar finding of remarkable residual effect on overall quality of life.

A more recent study from Kevin Chung's group in Michigan (J Hand Surg 2014) used qualitative research techniques to study a small group of patients with BPI. Again, the majority of the patients were satisfied, despite the fact that substantial functional disability still existed after surgery. Interestingly, patient satisfaction hinged on what they expected from the surgery. Certainly, this provides more support for having in-depth discussions before surgery about realistic expectations for ultimate functional recovery. The representative remarks from the patients in this study will resonate with any patient affected by BPI and with any health care provider who has cared for BPI patients.

BPI are devastating injuries, but the limited literature that is available indicates that most patients are satisfied with the surgical treatment that they receive. Certainly the experiences and trauma associated with BPI will influence the patient's perspective on what a satisfactory outcome is, but there is still a tremendous amount of room for improvement in how we deliver care for BPI, both in how we counsel patients and in the technical limitations in our current procedures.

Christopher J. Dy, MD MPH

My Bio at Washington University Orthopedics

dyc@wudosis.wustl.edu

What do patients expect from brachial plexus surgery?

This post is the beginning of a series of posts dedicated to exploring the patient experience after brachial plexus injury.

Patient responses when asked about what they expected for outcomes after brachial plexus surgery:

• "I expect to get movement again in my arm. I do not expect 100%, that is unrealistic. But I expect 90%."
• "I know it can never be 100%. I was told there is no guarentee, but maybe 80%."
• "I expect to hold my baby like a normal person would."

(Mancuso CA, Lee SK, Dy CJ, Landers ZA, Model Z, Wolfe SW; HAND 2015. Link)

As a whole, brachial plexus surgeons tend to focus on outcomes related to recovery of specific muscle strength (see link here for a paper that I wrote about this; Dy CJ, et al - J Hand Surg 2015). We probably feel that this is most objective and reliable way for us to assess improvement after injury and after surgery. We target our surgeries to improve specific muscle function (elbow flexion, shoulder abduction, etc.). But in doing so, we likely lose perspective of what is most important to the patient - can I do what I need to do in order to function independently?

As an orthopedic surgery resident at Hospital for Special Surgery in NYC, I was fortunate to work with two experienced brachial plexus surgeons (Drs. Scott Wolfe and Steve Lee) who had enough insight to recognize and investigate the importance of the patient experience in brachial plexus injury. We teamed up with a brilliant qualitative researcher (Dr. Carol Mancuso) and developed a study to perform detailed, in-depth interviews to ask about what patients expected after their brachial plexus injuries. This is ultimately important because it helps us, as surgeons, understand what you, as patients, are expecting in terms of ultimate recovery after surgery. If we see eye-to-eye and are able to level these expectations before surgery, it is more likely that we will both be pleased with the result. However, if we are on completely different pages before surgery, it will be a difficult postoperative course, filled with frustration - I might be happy that you are flexing your elbow, but you might be frustrated that you cannot hold your baby or are not functioning at 90% of normal.

The detailed results of this carefully conducted study are published in the journal HAND (link HERE; email me if you would like a copy of the paper). What struck me the most is the amount of variability in what patients expected after brachial plexus surgery. Certainly this speaks to the tremendous variability in the severity of injury (ie: upper trunk vs complete plexus... and every iteration in between), but it also tells me that a lot of what patients expect is shaped by what they have been told by other medical personnel and what they have found on the internet for themselves. And I truly believe that this is a critically important part of how we can make a difference for patients - educating other medical providers about what can (and cannot) be done for brachial plexus patients and publishing reasonable and reliable information on the internet regarding brachial plexus injury and brachial plexus surgery. These are life-altering and immediately-devastating injuries, and our patients deserve the best possible (and realistic) information about their injuries.

This project was incredibly beneficial for me as a brachial plexus surgeon. In my office, I take every effort to understand the magnitude of how this injury has affected the life of each patient (and the lives of their family and friends, who typically "step up" tremendously to help out). And I make sure to ask every patient what they expect before surgery... and then I take some time to make sure that we are on the exact same page in terms of realistic expectations for outcomes, both in terms of function and in terms of time. 

So now I ask the multitude of patients on the internet with brachial plexus injuries - what did you expect from your surgery? (if you had one). And for the BPI surgeons on the web - what type of expectations do your patients have for surgery? 

Christopher J. Dy, MD MPH
My Bio at Washington University Orthopedics
dyc@wudosis.wustl.edu

Timing is Everything...

"We will refer the patient for a brachial plexus surgery evaluation, although they will not do surgery until a year after the injury..."

This is a direct quote from the chart of a patient referred to me by a neurologist and an orthopaedic surgeon in another state. To me, this is maddening - absolutely drives me nuts! For that particular patient's injury, waiting more than a year to do the surgery would have left us with minimal chance of success after a nerve reconstruction.

Timing is incredibly important in the treatment of traumatic brachial plexus injuries. I often find myself discussing the importance of timing of treatment with both patients and referring physicians, so I thought this would be a good place to share my thoughts.

After a traumatic nerve injury occurs, the clock starts ticking. When a muscle no longer receives input from a nerve, it can become atrophic - essentially, when it has no signal to perform its function, it withers away. These changes are evident in human muscle at approximately 3 months - sometimes sooner, sometimes later. Somewhere around 12 months, these changes become irreversible, leaving the muscle essentially useless - even if you are able to establish a good nerve signal into the muscle with surgery or spontaneous recovery. At the same time as the muscle withers away, the distal part of the injured nerve (the part of the nerve "downstream" from the injury) also starts to degenerate. This makes it even harder to reconstruct a nerve injury after a long period of time, whether you excise and replace the injured nerve with a nerve graft or bypass the injured nerve with a nerve transfer.

What I wrote above it based on a number of animal studies and laboratory studies of human tissue, but has also been borne out in the clinical experience. While brachial plexus injuries (and this "timing" issue, in particular) are really tough to study with rigorous clinical trials, the collective experience and case series from multiple surgeons reflect that there is a relationship between clinical outcomes and timing of surgery - essentially, the sooner the better.

I prefer to see any patient with a brachial plexus injury or complex peripheral nerve injury as soon after the injury as possible. A pretty good number of these injuries may get better on their own without surgery - with careful watching, repeated examinations, and physical therapy. I would rather have a patient go through that process with me from as close to "day 1" as possible, so that if the recovery is inadequate by 3 months (or 5 months, etc... depending on the specifics of the case), we can be ready to intervene surgically at a time that is optimized for success.