Invisibilia is aware of the objections raised on social media in response to our recent episode about pain, called "The Fifth Vital Sign." We regret that the story was shared on some platforms using the word "cure," which was not our intended message about this treatment program.
We recognize that some chronic pain patients felt triggered or harmed by our story and for that, we apologize. Our intention was not to dismiss your suffering, but to highlight the complicated relationship between attention and pain and how our culture's attitude towards pain has shifted over the past fifty years. Chronic pain is a wide umbrella term that encompasses a huge range of conditions and our episode was not meant to serve as a commentary on all chronic pain experiences.
The podcast episode and the accompanying web article were intended to shed light on a small subset of chronic pain sufferers: young people who have been diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS), a rare condition that affects a higher proportion of females than males. AMPS is a real and serious condition with physiological symptoms and causes. If you'd like to read more about AMPS, how it works in the body, and suggested treatment methodology, we have compiled some resources linked below.
The treatment we explore in this episode incorporates intensive interdisciplinary pain treatment (meaning that it uses a mix of physical therapy and psychotherapy), which is widely accepted in the medical community as the most effective way to treat chronic pain conditions. We spoke with more than a dozen pain specialists in the process of reporting this episode. Incorporating psychotherapy in the process of pain recovery does not imply that the pain is not "real" or is "all in your head," it is merely an acknowledgment of the inextricable link between our bodies and our minds.
What makes the RAPS program unique from other interdisciplinary approaches is their attitude towards pain medication and the emphasis on diverting attention away from pain as a topic and as an identity. As Dr. Cara Hoffart, the head of the program we highlight explains, these additional techniques are important for this specific type of pain disorder, but certainly not appropriate in all cases. We did not encounter any patients of the program at Children's Mercy in Kansas City (Dr. Cara Hoffart's program) who claimed to have been traumatized or damaged by their experience in the program. Dr. David Sherry is highlighted as a well-respected leader in the field of pediatric rheumatology who developed a model of treatment that is being duplicated elsewhere, but we did not focus on Dr. Sherry's program as it was not the program in which our primary subject, Devyn, participated.
The RAPS treatment program at Children's Mercy Kansas City is certainly not appropriate for all pain patients and it's not even always recommended for children with AMPS. This program is also seen as a last resort by most patients; an option to try when nothing else has worked.
Because there have been so many specific questions and comments in the wake of the story, we wanted to give detailed responses from the primary doctor at the heart of the story, Cara Hoffart - Director of the RAPS program at Children's Mercy Hospital in Kansas City. We've concentrated on some of the concerns that have been raised by people on social media.
NEW RESPONSES FROM DR. CARA HOFFART:
QUESTION: IN THE STORY DEVYN THINKS SHE'S HAVING AN ASTHMA ATTACK AND IS COUNSELED TO WALK AROUND THE GYM RATHER THAN USE HER INHALER. WHY WASN'T DEVYN GIVEN HER INHALER IMMEDIATELY?
ANSWER: "Therapists are directed to try some relaxation breathing or other calming activity for 30-60 seconds IF we suspect panic attacks or vocal dysfunction might be in the mix. If symptoms persist beyond that timeframe, increased coughing or wheezing, we make sure the patient uses the inhaler. We also have medical providers available to assess any patient with concern for an asthma attack. We have several patients we've been able to discontinue use of asthma medications because they learned through this process they were not actually having asthma attacks, rather [they were having] panic attacks. We monitor this very closely and would not withhold medication for asthma."
QUESTION: HOW DO YOU PROTECT PATIENTS WITH OTHER UNDERLYING CONDITIONS, SUCH AS ARTHRITIS OR EHLERS-DANLOS SYNDROME, THAT MIGHT BE EXACERBATED BY THIS TREATMENT?
ANSWER: "For instance if you have chronic arthritis, myself or other medical doctors on the team do exams to make sure, 'Is this your arthritis flaring or is this your pain." And so we tailor the program to that. If your arthritis is flaring, you probably shouldn't do this much exercise. So we make sure that a lot of those other conditions are well controlled. And I've had to convince many families that I promise we will protect their joints. And there are certain activities those kids are not allowed to do, because it would put too much strain on their joints. The therapists really work on good form to make sure that they're doing things appropriately. And they're seen by a medical person every single day."
QUESTION: HOW DO YOU DETERMINE WHETHER A PATIENT CAN TOLERATE THE PROGRAM, AND HOW OFTEN DO YOU TURN PEOPLE AWAY:
ANSWER: "As far as turning them away it's not that often. [When we do, it is] because it's a really stressful program and they have to go work on some other things first... so certain psychological conditions. You also have to understand this really tough idea of pushing through pain. And so kids have to really understand that concept, and be in a place, cognitively, to do that. Otherwise that's just cruel. Like, they have to kind of want to be there and their parents can't just force them to be there. Our kids actually want to do this."
More on AMPS and the RAPS program:
- What is AMPS?
- What is the RAPS program?
- A Guide for Families with AMPS
- Treatment Guidelines for AMPS
- American Physical Therapy Association's page on AMPS
Initial treatment descriptions of exercise-based treatment in children:
Published research on intensive interdisciplinary pain treatment in children:
- https://www.ncbi.nlm.nih.gov/pubmed/24060708 (2014, randomized controlled trial)
- https://www.ncbi.nlm.nih.gov/pubmed/26101358 (2015, systematic review)
- https://www.ncbi.nlm.nih.gov/pubmed/23104827 (2013, study showing that while all benefited from treatment, patients in intensive treatment had larger improvements in disability)
- https://www.ncbi.nlm.nih.gov/pubmed/27879631 (2016, discusses the presence of these programs worldwide and their effectiveness, while calling for more research into the differences in exclusion criteria and program descriptions)
- https://www.ncbi.nlm.nih.gov/pubmed/29485533 (2018, study showing that most patients are satisfied with treatment even up to 4 years later)
- https://www.ncbi.nlm.nih.gov/pubmed/29102693 (2018, study showing how improvement differs over time, noting 73% of children had pain improvement and 88% saw improvement in functioning)