“My colleagues and I believe that oral immunotherapy (OIT) is a massive shift for families in the management of food allergy,” states Douglas P, Mack, MD. “Essentially, allergists and immunologists have moved from telling families to avoid foods to which their children are allergic to telling them it is safe to slowly introduce these food under our guidance, resulting in them having to function like ‘junior medical professionals’ and to be able to manage the decision about whether or not their child is well enough to take an immunotherapy dose at home and any potential reactions that can occur.”
Dr. Mack adds that in the early stages of OIT implementation, families were not well prepared, in his opinion, and their expectations did not align with the reality of the challenges of the OIT process. With the shift in responsibility for families that comes with OIT, shared decision making is crucial, says Dr. Mack. “Unfortunately, informed consent processes have been well described to be incomplete for many procedures, and my colleagues and I believed that OIT was no exception.” With little research about preparing families for OIT, the study team sought to determine whether the use of adjunctive tools could help ensure the discussion of all major topics and challenges associated with OIT.
An OIT Educational Video & Checklist
For a study published in the Annals of Allergy, Asthma & Immunology, the researchers investigated the use of a counseling video and checklist aimed at improving parent and patient knowledge about OIT. During a 2-hour counseling session, families participating in the study performed a pre-test to gauge their knowledge about OIT and then watched a counseling video that addressed each of the questions in the test as well as many other aspects of OIT, followed by a post-test and a 1-hour, one-on-one counseling session with an allergist to review the key aspects of OIT and the test results. The checklist was used to ensure that all major topics and challenges were discussed with the family and to ensure that the shared decision-making process was complete. The 35-minute counseling video was designed to present a balanced description of the OIT procedure and covered—through the use of statements, diagrams, images, and photographs—practical elements, the current literature, risks, benefits, complications, alternatives, and key consent issues that were addressed in a written OIT information package provided to all participants in the initial consultation. The 21 questions in the pre- and post-tests highlighted key practical, safety, and efficacy issues about OIT. The long-term and noncurative nature of OIT, the severity of reactions, and the fact that OIT is not the current standard of care were addressed in eight questions predetermined to be “high priority.”
Improved Parent & Patient Knowledge
“Using an adjunctive video and pre- and post-testing significantly improves parent, and even pediatric patient, knowledge of OIT, and a checklist can help clinicians ensure that the major aspects of OIT are full discussed with families before enrolling in this intensive procedure,” says Dr. Mack. “Prior to the educational video and counseling session, significant deficiencies in families’ knowledge and unrealistic expectations were observed in some participants, even among well-educated families.” Although most questions deemed to be high priority for families to understand were answered correctly before the educational video, several were answered incorrectly in a significant number of participants. “These incorrectly answered questions included the misconception that OIT is considered a cure for food allergy (it is not a cure) and the misconception that epinephrine use has not been used during OIT (it is used not infrequently),” adds Dr. Mack.
In all patient groups, significant improvements were seen in mothers’, fathers’ and patients’ knowledge of OIT. However, patients and fathers had a clearly lower baseline knowledge base than mothers (Figure). “We strongly recommend that patients and both parents be actively included in all aspects of this counseling and consent process,” Dr. Mack says. “Thankfully, by implementing this approach, parent and patient knowledge improves, and satisfaction with this procedure was extremely high.”