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– a strategy made possible with new therapies that have transformed treatment in recent years, including earlier treatment with methotrexate, expanding use of intra-articular glucocorticoids, and especially disease-modifying antibodies.
The guidelines, published online April 11 in the Annals of the Rheumatic Diseases, are a departure from some others in that there is very little research supporting the approach they advocate. But there is precedent in adult disease. Research in adults with rheumatoid arthritis has shown that achievement of low levels of disease activity through frequent adjustments of therapy improves patient outcomes, no matter the treatment used.
Still, “there’s not an abundance or much of any published data to support that approach in JIA patients,” said Daniel Lovell, MD, MPH, the Joseph E Levinson Professor of Pediatrics at Cincinnati Children’s Hospital Medical Center, and a member of the guideline committee. “That was something that the group wrestled with,” he added. In fact, one purpose of the guideline is to encourage just that sort of research. “We need to do the kinds of studies to find out what the suitable targets are, and what the suitable time frames (to reach the target) are, and the kinds of studies where you compare treat to target to standard and see if you see a difference,” Dr. Lovell said.
Nevertheless, the time for aggressive treatment in children has come, according to Karen Onel, MD, chief of the division of pediatric rheumatology at the Hospital for Special Surgery, New York. She pointed out that joint and organ damage resulting from JIA can be permanent. “These guidelines are meant to be fluid, but we need to be committed to getting patients into remission as quickly as possible. Anything less than that is not OK,” said Dr. Onel, who did not participate in drafting the guidelines.
The guidelines make almost no mention of specific treatments, with the exception of an admonition to avoid long-term systemic glucocorticoid therapy. “It’s addressing a philosophy of care that is different than what most of us do in our daily practice,” Dr. Lovell said. The lack of medication specifics also ensures that the guidelines will be useful in a wide range of settings, since specific drugs may be unavailable in some countries, or unaffordable due to insurance considerations.
The guidelines and the community at large are battling a historical perception of JIA as a childhood disease that patients outgrow. That has led to conservative approaches to therapy in an attempt to spare children from toxicity. But with new treatment options, that approach is outdated. “We have an issue in pediatrics where many people feel, including families, that you should wait until the child is old enough to make these decisions on their own. But the reality is that if [JIA] is not fixed in childhood, it won’t be fixed in adulthood,” Dr. Onel said.
About half of JIA cases are handled by rheumatologists who primarily work with adults, and they tend to favor toxicity-sparing regimens. These practitioners must be convinced to be more aggressive in their treatment, but parents are critical as well. The guidelines emphasize communicating with parents the rationale behind a chosen treatment target, along with information on the disease and the benefits and risks of the medications to be prescribed. Parents may struggle to understand the need for aggressive treatment, especially those with young children.
Parents may even be socially stigmatized by peers who think dietary change and exercise should be sufficient. “It’s really unfair. Nobody says to a parent of a child with cancer that they are treating their children with poison. The same holds true for other childhood chronic diseases. For whatever reason, the risk of permanent disability from childhood arthritis is understated,” Dr. Onel said.
A call for research
The primary target called for in the guidelines is clinically inactive disease (CID), defined as an absence of signs and symptoms of inflammatory disease activity, including extra-articular manifestations. An alternative target is minimal or low disease activity (LDA), which may be a more appropriate goal in patients with long-standing disease. Whatever the target, patients should be tracked at each clinical visit using a validated composite instrument, though the committee did not recommend one specifically.
Frequency of assessments may range from weekly to monthly or every 3 months, depending on the disease state. Within 3 months, the guidelines call for a minimum 50% improvement in disease activity, and by 6 months, clinicians should aim to achieve the target of clinical remission or LDA.
“It’s really important that clinicians systematically collect information on disease activity at every encounter. The next step is making sure we have some way of measuring outcomes. That might require a registry. It’s not easy to just start doing this. You need to have a plan in place,” said Esi Morgan, MD, of the department of rheumatology at Cincinnati Children’s Hospital Medical Center, and also a member of the guideline committee.
It remains to be seen how effective treatment to target will be, but Dr. Lovell hopes the guidelines will encourage research to provide definitive answers. “I think the recommendation is to just get on with it. Start doing trials utilizing a treat-to-target approach, and do them in a formal enough fashion that you can compare it to routine care in kids with JIA so you can assess the impact,” Dr. Lovell said.
Confidence is high. “There are many examples [of treating to target], so we can be confident this will work. What’s slightly different is applying this across the many subtypes of JIA. There are many categories, so it makes it a little more complex in terms of telling people what to do. But it’s definitely worth doing. We just need to solve the problem of how to address those issues,” Dr. Morgan said.
One key question is whether CID or LDA is the best target for functional outcomes. The UK Childhood Arthritis Prospective Study examined this question among 832 JIA patients and found that only achievement of CID on the clinical Juvenile Arthritis Disease Activity Score (cJADAS) was associated with an improvement in functional ability and psychosocial health at 1 year. Both endpoints were associated with greater absence of limited joints.
Another challenge is to determine what instrument to use to track disease activity and treatment response. Instruments include Wallace’s preliminary criteria, the American College of Rheumatology preliminary criteria, the Childhood Health Assessment Questionnaire (CHAQ), and the JADAS. All can be time consuming, which is a problem in a busy clinic. “That’s the work we need to do now: Figuring out what the best, easiest, most predictive instrument is going to be,” Dr. Onel said.
Dr. Lovell and Dr. Onel have no financial disclosures. Dr. Morgan is chair of the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), which has received grants from Novartis and Medac Pharma.
SOURCE: Ravelli A et al. Ann Rheum Dis. 2018 Apr 11. doi: 10.1136/annrheumdis-2018-213030.
– a strategy made possible with new therapies that have transformed treatment in recent years, including earlier treatment with methotrexate, expanding use of intra-articular glucocorticoids, and especially disease-modifying antibodies.
The guidelines, published online April 11 in the Annals of the Rheumatic Diseases, are a departure from some others in that there is very little research supporting the approach they advocate. But there is precedent in adult disease. Research in adults with rheumatoid arthritis has shown that achievement of low levels of disease activity through frequent adjustments of therapy improves patient outcomes, no matter the treatment used.
Still, “there’s not an abundance or much of any published data to support that approach in JIA patients,” said Daniel Lovell, MD, MPH, the Joseph E Levinson Professor of Pediatrics at Cincinnati Children’s Hospital Medical Center, and a member of the guideline committee. “That was something that the group wrestled with,” he added. In fact, one purpose of the guideline is to encourage just that sort of research. “We need to do the kinds of studies to find out what the suitable targets are, and what the suitable time frames (to reach the target) are, and the kinds of studies where you compare treat to target to standard and see if you see a difference,” Dr. Lovell said.
Nevertheless, the time for aggressive treatment in children has come, according to Karen Onel, MD, chief of the division of pediatric rheumatology at the Hospital for Special Surgery, New York. She pointed out that joint and organ damage resulting from JIA can be permanent. “These guidelines are meant to be fluid, but we need to be committed to getting patients into remission as quickly as possible. Anything less than that is not OK,” said Dr. Onel, who did not participate in drafting the guidelines.
The guidelines make almost no mention of specific treatments, with the exception of an admonition to avoid long-term systemic glucocorticoid therapy. “It’s addressing a philosophy of care that is different than what most of us do in our daily practice,” Dr. Lovell said. The lack of medication specifics also ensures that the guidelines will be useful in a wide range of settings, since specific drugs may be unavailable in some countries, or unaffordable due to insurance considerations.
The guidelines and the community at large are battling a historical perception of JIA as a childhood disease that patients outgrow. That has led to conservative approaches to therapy in an attempt to spare children from toxicity. But with new treatment options, that approach is outdated. “We have an issue in pediatrics where many people feel, including families, that you should wait until the child is old enough to make these decisions on their own. But the reality is that if [JIA] is not fixed in childhood, it won’t be fixed in adulthood,” Dr. Onel said.
About half of JIA cases are handled by rheumatologists who primarily work with adults, and they tend to favor toxicity-sparing regimens. These practitioners must be convinced to be more aggressive in their treatment, but parents are critical as well. The guidelines emphasize communicating with parents the rationale behind a chosen treatment target, along with information on the disease and the benefits and risks of the medications to be prescribed. Parents may struggle to understand the need for aggressive treatment, especially those with young children.
Parents may even be socially stigmatized by peers who think dietary change and exercise should be sufficient. “It’s really unfair. Nobody says to a parent of a child with cancer that they are treating their children with poison. The same holds true for other childhood chronic diseases. For whatever reason, the risk of permanent disability from childhood arthritis is understated,” Dr. Onel said.
A call for research
The primary target called for in the guidelines is clinically inactive disease (CID), defined as an absence of signs and symptoms of inflammatory disease activity, including extra-articular manifestations. An alternative target is minimal or low disease activity (LDA), which may be a more appropriate goal in patients with long-standing disease. Whatever the target, patients should be tracked at each clinical visit using a validated composite instrument, though the committee did not recommend one specifically.
Frequency of assessments may range from weekly to monthly or every 3 months, depending on the disease state. Within 3 months, the guidelines call for a minimum 50% improvement in disease activity, and by 6 months, clinicians should aim to achieve the target of clinical remission or LDA.
“It’s really important that clinicians systematically collect information on disease activity at every encounter. The next step is making sure we have some way of measuring outcomes. That might require a registry. It’s not easy to just start doing this. You need to have a plan in place,” said Esi Morgan, MD, of the department of rheumatology at Cincinnati Children’s Hospital Medical Center, and also a member of the guideline committee.
It remains to be seen how effective treatment to target will be, but Dr. Lovell hopes the guidelines will encourage research to provide definitive answers. “I think the recommendation is to just get on with it. Start doing trials utilizing a treat-to-target approach, and do them in a formal enough fashion that you can compare it to routine care in kids with JIA so you can assess the impact,” Dr. Lovell said.
Confidence is high. “There are many examples [of treating to target], so we can be confident this will work. What’s slightly different is applying this across the many subtypes of JIA. There are many categories, so it makes it a little more complex in terms of telling people what to do. But it’s definitely worth doing. We just need to solve the problem of how to address those issues,” Dr. Morgan said.
One key question is whether CID or LDA is the best target for functional outcomes. The UK Childhood Arthritis Prospective Study examined this question among 832 JIA patients and found that only achievement of CID on the clinical Juvenile Arthritis Disease Activity Score (cJADAS) was associated with an improvement in functional ability and psychosocial health at 1 year. Both endpoints were associated with greater absence of limited joints.
Another challenge is to determine what instrument to use to track disease activity and treatment response. Instruments include Wallace’s preliminary criteria, the American College of Rheumatology preliminary criteria, the Childhood Health Assessment Questionnaire (CHAQ), and the JADAS. All can be time consuming, which is a problem in a busy clinic. “That’s the work we need to do now: Figuring out what the best, easiest, most predictive instrument is going to be,” Dr. Onel said.
Dr. Lovell and Dr. Onel have no financial disclosures. Dr. Morgan is chair of the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), which has received grants from Novartis and Medac Pharma.
SOURCE: Ravelli A et al. Ann Rheum Dis. 2018 Apr 11. doi: 10.1136/annrheumdis-2018-213030.
– a strategy made possible with new therapies that have transformed treatment in recent years, including earlier treatment with methotrexate, expanding use of intra-articular glucocorticoids, and especially disease-modifying antibodies.
The guidelines, published online April 11 in the Annals of the Rheumatic Diseases, are a departure from some others in that there is very little research supporting the approach they advocate. But there is precedent in adult disease. Research in adults with rheumatoid arthritis has shown that achievement of low levels of disease activity through frequent adjustments of therapy improves patient outcomes, no matter the treatment used.
Still, “there’s not an abundance or much of any published data to support that approach in JIA patients,” said Daniel Lovell, MD, MPH, the Joseph E Levinson Professor of Pediatrics at Cincinnati Children’s Hospital Medical Center, and a member of the guideline committee. “That was something that the group wrestled with,” he added. In fact, one purpose of the guideline is to encourage just that sort of research. “We need to do the kinds of studies to find out what the suitable targets are, and what the suitable time frames (to reach the target) are, and the kinds of studies where you compare treat to target to standard and see if you see a difference,” Dr. Lovell said.
Nevertheless, the time for aggressive treatment in children has come, according to Karen Onel, MD, chief of the division of pediatric rheumatology at the Hospital for Special Surgery, New York. She pointed out that joint and organ damage resulting from JIA can be permanent. “These guidelines are meant to be fluid, but we need to be committed to getting patients into remission as quickly as possible. Anything less than that is not OK,” said Dr. Onel, who did not participate in drafting the guidelines.
The guidelines make almost no mention of specific treatments, with the exception of an admonition to avoid long-term systemic glucocorticoid therapy. “It’s addressing a philosophy of care that is different than what most of us do in our daily practice,” Dr. Lovell said. The lack of medication specifics also ensures that the guidelines will be useful in a wide range of settings, since specific drugs may be unavailable in some countries, or unaffordable due to insurance considerations.
The guidelines and the community at large are battling a historical perception of JIA as a childhood disease that patients outgrow. That has led to conservative approaches to therapy in an attempt to spare children from toxicity. But with new treatment options, that approach is outdated. “We have an issue in pediatrics where many people feel, including families, that you should wait until the child is old enough to make these decisions on their own. But the reality is that if [JIA] is not fixed in childhood, it won’t be fixed in adulthood,” Dr. Onel said.
About half of JIA cases are handled by rheumatologists who primarily work with adults, and they tend to favor toxicity-sparing regimens. These practitioners must be convinced to be more aggressive in their treatment, but parents are critical as well. The guidelines emphasize communicating with parents the rationale behind a chosen treatment target, along with information on the disease and the benefits and risks of the medications to be prescribed. Parents may struggle to understand the need for aggressive treatment, especially those with young children.
Parents may even be socially stigmatized by peers who think dietary change and exercise should be sufficient. “It’s really unfair. Nobody says to a parent of a child with cancer that they are treating their children with poison. The same holds true for other childhood chronic diseases. For whatever reason, the risk of permanent disability from childhood arthritis is understated,” Dr. Onel said.
A call for research
The primary target called for in the guidelines is clinically inactive disease (CID), defined as an absence of signs and symptoms of inflammatory disease activity, including extra-articular manifestations. An alternative target is minimal or low disease activity (LDA), which may be a more appropriate goal in patients with long-standing disease. Whatever the target, patients should be tracked at each clinical visit using a validated composite instrument, though the committee did not recommend one specifically.
Frequency of assessments may range from weekly to monthly or every 3 months, depending on the disease state. Within 3 months, the guidelines call for a minimum 50% improvement in disease activity, and by 6 months, clinicians should aim to achieve the target of clinical remission or LDA.
“It’s really important that clinicians systematically collect information on disease activity at every encounter. The next step is making sure we have some way of measuring outcomes. That might require a registry. It’s not easy to just start doing this. You need to have a plan in place,” said Esi Morgan, MD, of the department of rheumatology at Cincinnati Children’s Hospital Medical Center, and also a member of the guideline committee.
It remains to be seen how effective treatment to target will be, but Dr. Lovell hopes the guidelines will encourage research to provide definitive answers. “I think the recommendation is to just get on with it. Start doing trials utilizing a treat-to-target approach, and do them in a formal enough fashion that you can compare it to routine care in kids with JIA so you can assess the impact,” Dr. Lovell said.
Confidence is high. “There are many examples [of treating to target], so we can be confident this will work. What’s slightly different is applying this across the many subtypes of JIA. There are many categories, so it makes it a little more complex in terms of telling people what to do. But it’s definitely worth doing. We just need to solve the problem of how to address those issues,” Dr. Morgan said.
One key question is whether CID or LDA is the best target for functional outcomes. The UK Childhood Arthritis Prospective Study examined this question among 832 JIA patients and found that only achievement of CID on the clinical Juvenile Arthritis Disease Activity Score (cJADAS) was associated with an improvement in functional ability and psychosocial health at 1 year. Both endpoints were associated with greater absence of limited joints.
Another challenge is to determine what instrument to use to track disease activity and treatment response. Instruments include Wallace’s preliminary criteria, the American College of Rheumatology preliminary criteria, the Childhood Health Assessment Questionnaire (CHAQ), and the JADAS. All can be time consuming, which is a problem in a busy clinic. “That’s the work we need to do now: Figuring out what the best, easiest, most predictive instrument is going to be,” Dr. Onel said.
Dr. Lovell and Dr. Onel have no financial disclosures. Dr. Morgan is chair of the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), which has received grants from Novartis and Medac Pharma.
SOURCE: Ravelli A et al. Ann Rheum Dis. 2018 Apr 11. doi: 10.1136/annrheumdis-2018-213030.
FROM ANNALS OF THE RHEUMATIC DISEASES