Survey: Parents, Doctors Satisfied With Epilepsy Teleconsultations
In a survey of physicians and families at a rare pediatric epilepsy center, teleconsultation appointments were found to be effective and convenient, although the absence of physical exams and in-person evaluations were seen as definite drawbacks.
“Despite some limitations, it is most likely that TC [teleconsultation] become a new part of the clinical activities in rare pediatric epilepsy centers,” the researchers concluded following the one-month study, which was conducted in spring 2020.
Six of the more than 140 patients involved in the study had Dravet syndrome, characterized by episodes of prolonged seizures.
Most of the survey’s respondents favorably rated the “gain of time and the absence of travel” with teleconsultation, but the researchers noted that “half of them would prefer a clinic for the next appointment.”
The study, “Usefulness, limitations, and parental opinion about teleconsultation for rare pediatric epilepsies,” was published in Epilepsy & Behavior.
For patients with rare pediatric epilepsies, including Dravet, regular monitoring, personalized care, and familial support are an important part of managing their condition. The COVID-19 pandemic impacted access to routine medical care for many rare disease patients and increased the necessity for telehealth options.
While teleconsultations offer safety and convenience, healthcare providers and caregivers have voiced concerns that such appointments may not provide patients with the same level of satisfaction as inpatient visits.
To assess the usefulness and limitations of teleconsultations, researchers at a rare pediatric epilepsy center in Paris conducted an anonymous online survey of physicians, patients, and parents/caregivers.
Between March 23 and April 23, 2020, 151 teleconsultations for 145 patients with rare epilepsy syndromes were conducted at the center. A total of 109 (70.2%) of the teleconsultations were done by videoconference and 42 (29.8%) by phone. The patients, including the six with Dravet, had a mean age of 8.7 years.
Altogether, 105 survey responses were submitted.
The physicians were asked a series of 11 questions per child, which included queries as to what could not be assessed during the teleconsultation “that would have been important.” Clinicians were asked if they had been able to see the child on video during the appointment, and if they would be willing to do another teleconsultation with the patient and parent.
Parents, in turn, were asked 16 questions in all, including some procedural ones, such as whether they were using a smartphone, tablet, or computer for a videoconferencing visit. For visits by telephone, parents were asked if they had refused a teleconference, or if they were afraid they would be unable to connect.
The survey specifically asked parents if they were able to ask all of their questions “similarly to a clinic on site,” and whether they “felt the physician more distant.”
Notably, the survey addressed the travel difficulties usually faced by parents given their children’s epilepsy. “The [teleconsultation] preserves you from having to travel, wait and constraints which are heavy in view of your child’s disability: Yes/No.”
In their overall responses, both the physicians and the parents reported that the teleconsultations were satisfactory.
Indeed, the physicians surveyed felt confident to organize a teleconsultation for the next visit for 74.8% of the children. Importantly, for each teleconsultation, the doctors felt that the inability to perform a physical examination, measure the child’s weight, and evaluate psychomotor development were limitations to this approach. In some cases, the physicians also reported that the teleconsultation limited their ability to evaluate the behavior of the child.
The physicians generally felt less confident about teleconsultations with younger patients. They also reported more confidence in teleconsultations with patients classified as stable (82.8% confident) compared with children who were unstable (73.8%).
In the parent questionnaire, the children’s mothers or fathers reported their opinions on 74 video appointments and 26 phone teleconsultations. Almost all parents (99%) reported satisfaction with their teleconsultation experience and felt their questions were better answered than during in-person visits.
Additionally, 98% of parents said teleconsultations saved time usually spent traveling to and from the clinic and waiting to see the physician. A total of 59% of parents said teleconsultation was more convenient than bringing their child to the clinic.
When given the option, 49.5% preferred to have their next visit by video teleconsultation, 41.4% at an in-person clinic, and 9.1% by phone teleconsultation. Still, only 44.6% felt teleconsultations could replace clinic visits.
Like physicians, many parents expressed concern about the absence of a physical exam during teleconsultations, accounting for 53% of comments about teleconsultation limitations.
“Further studies are needed to evaluate the impact on the quality of life and the quality of care of the use of TC [teleconsultations], in particular repeated TCs, for rare pediatric epilepsy patients,” the researchers wrote.
Still, for both physicians and families, teleconsultation seems like a useful approach to answer patients’ needs, the researchers said.
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