By: Karine Toupin-April, PhD

Various studies have shown that the general population, and particularly patients with chronic conditions, use all sorts of health approaches, such as complementary and alternative medicine (CAM). The use of these approaches is also very common among children with chronic conditions, such as juvenile idiopathic arthritis (JIA). These treatments are usually used together with conventional medicine, and include natural products (e.g., herbs, vitamins and minerals), mind and body practices (e.g., acupuncture, massage, relaxation), and other complementary health approaches (e.g., homeopathy, traditional healers). There are various definitions of these treatments, and studies that have assessed their use do not always include the same types, which has led to discrepancies in their reported use. In JIA for example, CAM use has been reported to range from 34% to 92%.

There is currently no standard way to document the use of CAM treatments in the clinical setting. A review of the studies published in medical journals found that many questionnaires to assess the use of CAM by pediatric patients had been developed, but none had been thoroughly tested by experts and families to ensure they had the right content, were reliable and easy to use. It is important to discuss the use of CAM with a physician or other health care professionals since these treatments may lead to health benefits, but also potential side effects, higher costs, as well as interactions with other treatments. However, youth and families are often reluctant to discuss CAM with their health providers. To address this gap, our team aimed to develop and validate a questionnaire to assess CAM use in an exhaustive, reliable and non-judgmental manner. This questionnaire could be used to facilitate a discussion between families of youth with JIA and health providers.

To gain consensus on the content of the questionnaires, we conducted: (1) an online Delphi survey of 126 international experts, and (2) a consensus meeting of 14 clinicians/researchers in the field of CAM, general pediatrics and pediatric rheumatology, as well as youth with JIA and parents. This led us to develop two versions of the questionnaire: one to be used in discussion with the child and another to be used for a discussion with a parent. The questionnaire is called the “Which Health Approaches and Treatments are you using?” (WHAT) questionnaire. You can read the child version and parent version if you want a more in-depth look into the questionnaires. The two versions of the questionnaire were then tested to ensure that their content was adequate. This testing involved a review by 21 health care providers and researchers in the field of pediatric rheumatology, as well as 22 children and youth aged 8 to 18 years, and one of their parents, recruited from the Children’s Hospital of Eastern Ontario and the Hospital for Sick Children rheumatology clinics.

Consensus was reached on 17 items of the WHAT questionnaires and were grouped into four categories:

  • The use of CAM by the child;
  • Factors associated with CAM use;
  • Perceived impact of CAM use; and
  • Communication about CAM.

Both child and parent versions of the questionnaire included the following questions:

  • Has the child used CAM?
  • Which types of CAM did the child use?
  • What was the reason for the child to use/not use CAM?
  • Who decided that the child should use CAM?
  • How helpful was the use of CAM?
  • What were the benefits and risks of using CAM?
  • Has the way the child follows his/her medical treatment changed because he/she used CAM?
  • Has the child/parent talked about CAM with the child’s conventional health care team?
  • Have the child and parents talked together about using CAM?
  • Does the child/parent plan on using CAM in the future?

The parent version also included these questions:

  • Has the parent had any trouble getting CAM treatments?
  • Did the parent consult someone to use CAM for their child?

Although the WHAT questionnaire requires further testing, most participants felt that it had strong potential to start a discussion about CAM between the child, parent and health care professional. Some participants raised the issue that it may be difficult for health providers to assess CAM use and provide advice given their limited knowledge in this area, and given their lack of time in a consultation. To address this issue, another research project is being conducted to develop on-line tools to help families and health providers gain information about various treatment options for symptoms such as pain – one of the most common reasons for using CAM.