We would be remiss not to acknowledge the disruption that COVID-19 has had on the lives of the children we care for and their families, as well as on all of us during the past few months. Also, we are painfully aware of our national priorities and the pandemic emergency that has placed untold burdens onto an already fragile health care system. The safety net for children with disabilities is consequentially quite vulnerable. The crisis is a real and stark reality in everyone’s practice. In these uncertain times, we appreciate that we are all adjusting to caring for children with disabilities, as well as for each other through connectivity and common purpose.
The second Cerebral Palsy (CP) focused Special Issue of the Journal of Pediatric Rehabilitation Medicine continues to explore the impact of rehabilitation medicine on the care and research for those with CP. To highlight this, we invited Dr. Margret Turk, the most recent Gabriella E. Molnar-Swafford Lifetime Achievement Award recipient to provide a perspective on the impact that our field has had on recent literature in CP. Drs. Turk, Klamar, Klawoon et al. utilized a unique analysis of bibliometrics to demonstrate the expanding literature that emphasizes function and quality of life for persons with CP. Bibliometrics has considerable potential as a research area for healthcare scientists and practitioners that can be used to discover new information about academic trends, pharmacotherapy, disease, and broader health sciences trends.
We are delighted to introduce an annual section of the journal, that we are calling “Needle Tips.” This section will be devoted to the art, science and practice of injecting neurolytics in children with CP. It was conceived as a unique forum in which the active community of injectors would express some of the daily problems, challenges and nuances that are the bread and butter of our daily practice.
All of us are aware of the need for Evidence Based Practice (EBP) and we appreciate the effort, time and patience that goes into a well-designed, Randomized Controlled Trial (RCT) that serves as the cornerstone of our knowledge. However, we also know that most of the children that are seen in the practice of Pediatric Rehabilitation Medicine (PRM) are unique, and have many confounding medical issues that rarely fit inclusion criteria of the RCT studies. Rather, they most likely fit the exclusion criteria. This is a conundrum when extrapolating from the highest level of research evidence.
This level of evidence can help us guide the care of the patients we inject. All of the RCT studies utilizing botulinum toxin are on children with CP, which has current FDA approval for lower and upper limbs Botulinum Toxin Injections. Children with CP, most likely, comprise the majority of our injection practices, however, these injections represent a very narrow window in comparison to what and who we treat in the “real world”. In addition, for children with CP and those with other diagnoses, injectors face many complex variables daily. These complex variables can impact functional outcomes and cause adverse events. To address a few of these challenges, we have asked four regional injectors from the PRM community to frame and present commentaries and their views and rationale on current use, adverse events, dilution and diagnoses. We hope that this will create discussions and stimulate creative ideas for incorporating our substantial experience to improve care and safety of the injections. We want to encourage all of you to pursue evidence based practice and patient focused clinical work. Also presented in this issue is research on robot-assisted gait, constraint induced movement therapy, fatigue of the unaffected limb in hemiplegia, autonomy, effects of solid ankle-foot orthoses, and hepatoblastoma seen in prematurity and cerebral palsy.
One additional feature is a section called, “Human-TIES come first,” which is a chance to introduce a piece of art, music, book or in this case a film to our readership that will enhance our understanding and create a human view to the experience of living with a disability. In this issue, Dr. Rak reviews the documentary, Crip Camp. We consider this a must see for the field.
Thank you to everyone for all of the contributions to care. The Special Issue editors would like to request a call for ideas and discussion from the field, as we welcome suggestions for next year’s Special Issue on Cerebral Palsy.
We also want to send out a thank you to Elaine Pico, MD who has taken over the leadership for the Journal of Pediatric Rehabilitation Medicine for the last 3 years. She is moving this journal in great directions.
“Be careful out there!” …Hill Street Blues