Juvenile Idiopathic Arthritis Patients and Parents Don't Agree on Adherence to Treatment

Christine Miller Health Guide
  • A recent study published in the August issue of Arthritis Care & Research discusses what many parents and children with JRA may already know- that parents’ and children’s perceptions of the child’s adherence to medication and exercise regimen are frequently different. The study found that the level of agreement was moderate, at best, with more agreement related to exercise programs than to medication.

    The researchers acknowledge that adherence is difficult to measure and that parents and professionals often overestimate it for various reasons. For example, parents of young children often answer questions for the child but may not be fully aware of the child’s difficulties in adhering to treatment. Other studies have also shown that while adolescents may be less adherent to treatment programs because of increased autonomy as they mature, older children and adolescents who are responsible for their own treatment may be more reliable in their reporting of adherence. In this study, the researchers hoped to determine the level of agreement between parents and children regarding adherence and to examine whether age, disease duration and disease severity are associated with perceptions of adherence.
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    The study, conducted at the JIA clinic at the Montreal Children’s Hospital, included 50 children ages 9-18 and their parents. The majority of the children were girls (81%) and the majority of the parent respondents were mothers (75%). Overall, both children and parents reported high levels of adherence to medication (over 80%) and moderate levels of adherence to exercise regimens (61.2% for children and 57.4% for parents). Parents rated medication as being more helpful than did their children. Parents also rated their children as having more difficulty doing exercises and having more negative reactions to medication and exercise than did their children. Younger children agreed more with their parents on adherence to exercise, but agreed less on difficulty doing exercises and negative reactions toward exercise.

    The researchers theorized that the lower level of agreement between parents and children for medication might be because parents are less aware of their children’s adherence to medication. Parents may not always watch children take their medicine, but assume that the child remembered on his or her own. The researchers also hypothesized that parents may over estimate the difficulty to do exercises, the negative reactions to treatment, and the helpfulness of medication because parents put more emphasis on the problems their children experience and may be more conscious of potential problems their children may have in the future. On the other hand, children who have had the disease for a while may be more optimistic because they see living with the disease as “normal.”

    Adolescents had better agreement with their parents on difficulty of doing exercises and adherence because adolescents tend to be more vocal with complaints than younger children and often complain about a lack of time for exercise. The parents of younger children reported higher levels of adherence to exercise probably because parents often help younger children complete their exercises while older children tend to exercise on their own, which may lead parents to think that children are not doing their exercises.

  • The study concluded that professionals should assess both parents’ opinions and children’s opinions and perceptions, especially those of adolescents when formulating treatment plans in order to facilitate adherence.
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Published On: August 29, 2006