Experts Want to Standardize Treatment for Painful Pediatric Rheumatic Diseases

Experts Want to Standardize Treatment for Painful Pediatric Rheumatic Diseases

By Staff.

Children with rheumatic diseases may have painful, juvenile forms of arthritis, lupus, fibromyalgia, as well as, other conditions. There is a wide-ranging variability in terms of how pediatric patients with rheumatic diseases are treated in clinical practice, which makes understanding which treatments and therapies may work best. And, now a new review article in Arthritis & Rheumatology examines recent efforts to address this issue.

In a perfect world, randomized placebo-controlled clinical trials are conducted to help determine the best treatments against a disease, but such trials are difficult to perform in rare diseases, such as pediatric rheumatic diseases.

Consensus treatment plans (CTPs) are a potential alternative. CTPs are standardized strategies that are developed by a consensus among experts and are intended to help reduce treatment variability and allow for comparisons of different therapies. The Childhood Arthritis and Rheumatology Research Alliance (CARRA), the largest pediatric rheumatology research collaborative in North America, is pioneering the use of CTPs to standardize the common treatments for pediatric rheumatic diseases.

In their review, Sarah Ringold, MD, MS, of Seattle Children’s Hospital, and her colleagues present the rationale for the CARRA CTP approach, consider its advantages and disadvantages, and introduce related ongoing research.

“Once a diagnosis is made, providers and patients and their families can choose together the CTP strategy that they believe will work the best for that disease,” Dr. Ringold explained. “Information on how the patient is doing on that treatment is then collected at regular clinic visits through a registry. At the end of the proposed study duration, researchers can then compare how the patients do between the different CTPs.”

Dr. Ringold noted that ongoing large-scale studies are testing this approach in juvenile idiopathic arthritis. Results from these studies will provide more information on the feasibility of this approach and may provide insights on which therapeutic strategies are most likely to be successful for certain patients. “The CTP approach will be even more powerful when coupled with biospecimen collection to facilitate translational research aimed at identifying biomarkers of response and non-response, paving the way towards personalized medicine,” she said.

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Authored by: Staff

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14 Comments on "Experts Want to Standardize Treatment for Painful Pediatric Rheumatic Diseases"

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Dee, if you have been taking the medications for years, they are probably generic. Ask your doctor to write it for generic, then pay for it yourself. It should be pretty cheap. Express Scripts can only refuse to pay for it, but they can’t stop you from filling a prescription. Just go to a discount pharmacy and get it yourself. I am sorry you have been treated so terribly.. The command economy that has developed around medicine is worse than the one that failed in the Soviet Union. I’m just waiting for the Great Toilet Paper shortage, now.

The central control of medicine is creating a lack of diversity such that a patient who gets no help from one doctor who seeks alternatives will only find more of the same. Standardization of treatment means that Denial of Care is consolidated as the norm, How can doctors pioneer new treatments in medicine, when policies like this tie them to the past?

At the moment, the medical community provides little or no help for chronic pain conditions, which are much more than pain conditions, of course, and include serious neuroimmune
and automimmune disorders. If we rule out all of the treatments that one or another doctor disapproves of or doesn’t “believe” in, as is a problem with fibromyalgia and other conditions, then the “consensus” is to DO NOTHING, but put on a big song and dance with a “multi-modal” therapy, consisting of drugs that don’t work and therapies that make the patient feel they’ve been paid attention to, but also do nothing. Since doctors often make these conditions worse with their fumbling around, that might not be a bad thing. However, it still leaves the patient where he is now — with NO help, and, of course, a hefty bill. For all the treatments they rule out, the bills keep getting bigger and bigger and bigger… At the moment, the patients who experience the most improvement are the ones who leave the medical community behind, band together and share knowledge, and self treat. Tying the hands of those doctors who are actually willing to wade in there and help these kids just puts the cherry on top of the Denial of Care problem that we are experiencing. But, it’s just the icing on the cake. The problem has been around for a long time and affects the majority of medical providers, particularly in the lawsuit sensitive field of pediatric care, so one more push to tie the hands of doctors won’t make much difference. I have already taken to referring to the medical community as McDoctors, who only know how to serve off the limited menu of Big Macs and Quarter Pounders for diagnosis and treatment. When you bring them an illness like Lupus or Fibro, they are already ineffective, so this will only make them a bit more so.

Until the medical community gets to the point where they actually have an effective treatment, they are no different from Snake Oil salesmen. Standardized snake oil sale is still snake oil Meanwhile, if you want to get well, patients are best advised to seek out patient communities, and ask THEM what works. Your doctor is unlikely to be of much help.

I’m a 64 year old woman that has been seeing a psychiatrist for the last 17 years He has been with me Forbes many problems and can’t think straight, Express Scripts is messing with my psych meds, and I can’t even hardly think straight where do they get the right to tell me I can’t have my meds that I’ve been on for years. Anybody out there no or do I have a person that can help me. I just don’t get things I’m all messed up my head. And they’re taking my meds away not filling them for my mental problems. Suicide runs in my family and I don’t know what to do. Two of my sisters committed suicide and this doctor got me through that I was devastated I didn’t want to live like my sisters are all gone. And now they’re messing with me Express Scripts Express Scripts who do they think they are. I hope someone’s out there that can tell me that they can’t do that because it’s not their decision there overriding a Dr specialist doctor and saying that I can’t have it. They won’t fill anything for me on my two of my meds they said they would not do it. I don’t know what to do I can’t think of what to say so I’m going to stop

The correct link to the Ringold review article can be found here: http://onlinelibrary.wiley.com/doi/10.1002/art.40395/full The link NPR published was to the index page of the entire journal. A second problem with the NPR coverage, is that chronic pain is only one aspect of childhood rheumatic disease. In addition to the generalized ache of a rheumatic joint, there is intense pain associated with movement, which causes the child to remain stationary and become emotionally depressed. Also, the condition is degenerative…joint tissue continues degrading as the disease progresses. It can move from one joint into several. While everyone else who has commented on this NPR writeup so far, has focused on the fact that pain is under-treated, there’s more to the treatment of childhood rheumatic disease than the pain itself. The primary goal of treatment, is to stop the rheumatic disease from spreading out of one joint and getting into all the child’s joints. This is why there’s a focus on comparing the biologic drugs for effectiveness. Some drugs can stop the disease from spreading elsewhere in the body and worsening. And some of those drugs may be more effective in one patient, than they are in another. What “standardization” means, then, is that each rheumatology doctor would use the same tests to discover what specific kind of childhood rheumatic illness, the individual child actually has. A treatment that works for Disease A, might be useless for Disease Q. Knowing for sure if the child has the A disease or the Q disease, is important, and if some doctors who don’t standardize how they tell the difference between A and Q, inadvertently give the Q children the A medicine and then write an article on how the A medicine didn’t seem to work, the effect is that other doctors may be afraid to try the A medicine on people who actually need it. What many of us perceive as a war on pain patients, has been driven entirely by bad information about why addiction happens and who develops it. Pain is being under-treated out of fears of addiction. The lack of standardization in measuring pain and measuring addiction, causes different doctors to make similar scary statements about us, with the result that people who need opioids can’t get them. Unless doctors have standard ways of diagnosing exactly what disease we have and exactly where we hurt…and exactly how much we hurt…they can administer treatments that are for a different disease than the one we have, get poor results, and conclude we should be left to suffer because nothing can be done. (For example, a friend of mine has Lyme disease. A self-described “pain doctor” put her through 3 spine operations that made her worse instead of better, because he knew how to do spine operations but didn’t actually bother testing her to see if she had Lyme. The correct treatment to stop Lyme from spreading, is to give an antibiotic to kill the Lyme pathogens…not to operate on the patient’s spine! My friend… Read more »

Those poor babies already get little or nothing for pain. How can they do this to innocent babies?

I feel sorry for these young people that are meant to just suffer with nothing they can do about it. As with the entire chronic pain patients problem there’s no answer. I hope the national pain report realizes that a lot of us are on their last gasps of life while there pain control has been reduced to Simply a level that cannot be tolerated. I think you can take it to its obvious conclusion. If there are no more pain patients will be no more pain report . These poor kids don’t even have that option

Kids shouldn’t be given cookie-cutter treatments. They should be individualized and doctors need to have freedom and flexibility. As we see now, “recommendations” carry more weight than they should… we’re treading in dangerous territory.

Pain surely impacts a child’s ability to learn and surely affects a child’s sense of identity. There are other ways to help children in pain than treating them like they’re not individuals with unique needs.

Medicine cannot be standardized or streamlined. It’s a failure to recognize that some patients don’t respond or can’t tolerate the treatments offered. It’s a tightening noose around the neck of both doctor and patient.

Perhaps doctors become unprofessional and verbally abusive to patients out of frustration of having the leash yanked too many times. I have to wonder. I’ve experienced poor treatment from doctors and news like this ensures that the worst is yet to come… Even well-meaning, professional doctors will be beaten into submission. So very unfortunate.

Autonomy for doctors and expanded treatment options will benefit patients. Give doctors more time with patients, too. We’re in a downward spiral.

As a person that suffers intractable pain, I’ve learned that ‘standardized’ treatments rarely work. Each person is unique and should be treated that way.

We already know that as women studies show our pain is largely under treated and ignored. God bless these poor children with voices who are even less often heard with parents so willing to believe the doctor over their own children. There is a place for this kind of treatment. It is a starting point. We already know different people metabolize medications very differently. A one size fits all approach for children is not only cruel, it is bad medicine.

I suffered as a child through the sixties. Everything was “growing pains” . Aside from the occasional aspirin I would actually steal from my Mom’s bedroom, nothing for diagnosis not treatment. Golly, really haven’t come far. Really thinks me off knowing yet another generation will suffer too. Insanity.

Lots of words, not much strategy. I feel very sorry for these young patients because I don’t see very much relief in all of their personalized programming.

I am 50 years old now. I was diagnosed at the age of 15 with juvenile rheumatoid arthritis. I had pains at age of 14. My parents were saying it was growing pains.

First I wonder how often this happens were parents wave off pain as growing pains.

Second I am very curious about the types of CTPs they are now doing. Back in the day for me. I was just prescribed Motrin (a prescription back then).

Thank you for your article and advice. My sister and I were

both in horrific auto accidents.