Although methotrexate is one of the most commonly prescribed therapies for the treatment of juvenile idiopathic arthritis (JIA), it comes with a host of unpleasant side effects. A new study sheds light on the difficulties of living with these side effects from the perspective of the children experiencing them.
Titled, “Perceptions of methotrexate intolerance and its impact on daily life in school-age children with juvenile idiopathic arthritis,” the study was published in the Journal of Pediatric Nursing.
About half of the children treated with methotrexate experience side effects (also called methotrexate intolerance), which can include gastrointestinal symptoms (nausea, vomiting) as well as psychological distress, such as fear and anxiety in anticipation of the next treatment.
“Approximately 25% to 33% of patients with JIA achieve adequate disease control with first-line treatment of non-steroidal anti-inflammatory drugs. The remainder requires more aggressive second-line pharmacotherapies such as [methotrexate], which is the first choice of disease-modifying anti-rheumatic drug for the treatment of JIA,” the researchers stated.
Some studies have qualitatively described what it’s like to manage these symptoms by talking to patients’ mothers, but knowing how children themselves experience these side effects might provide a more direct perspective to inform care.
To this end, researchers recruited 12 children with JIA (nine females and three males, ages 6–12) who were experiencing methotrexate intolerance. The children underwent semi-structured interviews in which they were asked to describe how they experienced methotrexate symptoms and how those symptoms affected their lives.
To increase engagement and put the children at ease, the interviews also included toys, figurines and other visual aids for the children to use to tell their stories.
The researchers described three overarching themes that emerged from these interviews. The first was that “no kid likes taking [methotrexate].” Many of them bluntly stated that they disliked the therapy and experienced some amount of anxiety or dread about getting treatments. Many reported feeling physically ill just when thinking about it; for example, one child described getting stomachaches right before taking it.
The second big theme was that routines and strategies for dealing with the side effects are critical. Some children described watching television, playing video games, or sleeping during administration as ways to distract themselves from the discomfort — though in at least one case, a game that began as a distraction became less pleasant over time, as the child began associating playing the game with the feelings of the methotrexate side effects. Methotrexate was administered either orally or subcutaneously via injection under the skin.
The final theme was that methotrexate has a significant impact on life well beyond the time it is administered. The researchers reported that the side effects “slowed children down and made it difficult to focus on homework or play sports,” and trial and error was often necessary to find a way to include getting the treatments in a way that would minimally interfere with everyday life.
The researchers also noted that the descriptions were largely specific to methotrexate; the children distinguished between these symptoms and other unpleasant procedures such as blood tests: “Well, for my [methotrexate] sometimes I feel sick after, but for the blood test it just hurts a little when you put [the needle] in and you take it out.”
This study highlights how difficult it can be to get a treatment that, while effective at controlling disease, can cause other deeply unpleasant effects, especially for a child. The researchers said clinicians and families need to be aware of the side effects and behaviors so that they can be identified and dealt with promptly.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?