Parents Often Decide on Their Own They Want Tonsillectomy for Children's Sleep Apnea

By Linda Carroll

January 04, 2021

(Reuters Health) - Many parents with children who experience obstructive sleep-disordered breathing (OSDB) have a preference for tonsillectomy to improve the apnea and often aren't looking for guidance on treatment choices, a new study finds.

Those who lean toward surgical treatment often show up to an initial consultation with a pediatric surgeon already familiar with their children's condition and the surgical treatment and will pepper their discussion with medical jargon, researchers reported in JAMA Otolaryngology-Head and Neck Surgery.

"The decision for surgery is often made before the visit with the surgeon," said study coauthor Dr. Emily Boss, a professor of otolaryngology, pediatrics, and health policy and management at the Johns Hopkins Medical Institutions. "Understanding where parents are when they come into the consult may influence how we as physicians communicate and engage families to learn what they are most scared of and what their values are."

To take a closer look at how patient consults might be improved, Dr. Boss and her colleagues recruited parents from three outpatient clinical sites who had children who were going to their first otolaryngology consultation.

Prior to the consultation, participants filled out a baseline questionnaire that queried about variables such as parent and child age, race/ethnicity and gender, parent educational level and income, and child's insurance status. All the parents agreed to have their consults audio recorded.

To measure the parents' decision-making role preference, the baseline questionnaire asked parents to indicate preferred roles in treatment decisions during the clinical encounter with these possible responses: "The doctor takes the initiative and decides what is best for my child; "The doctor considers some of my ideas but still makes most, if not all, of the final decisions"; "The doctor and I make the final decisions together"; "I make all the final decisions."

The final analysis focused on 52 parent participants (mean age, 32.9) and their children. The children being evaluated for OSDB ranged in age from 2 to 13, with an average age of 5.8. The majority of the parents were female (92%) with more than a high school education (75%). Half the parents were non-Hispanic white, while 37% were Black, 10% were Hispanic and 4% were self-described as "other."

Of the 52 parents in the study, 22 (42%) indicated a strong preference for surgical treatment before the consultation. Twenty-five children had polysomnography results available prior to the consultation. Based on those results, four of the children had no OSA, 13 had mild or moderate OSA and eight had severe OSA. Of the eight with severe OSA, the majority of parents (six) were not predisposed to surgical treatment.

After accounting for parent education level, parent preferred decision role and clinician jargon use, a predisposition for tonsillectomy was associated with a decrease in the odds of asking substantive questions during consultation (OR: 0.22) and an increase in the odds of parent introduction of medical jargon in consultations (OR: 3.95).

To improve communication during consults, Dr. Boss recommends that clinicians "(1) be very clear without using complex medical terms regardless of what you think the parent knows; (2) encourage question asking by saying 'what questions do you have?' rather than 'do you have any questions?'; and (3) ask the parents what concerns them the most."

Good communication between the surgeon and parent allows for the opportunity to have optimal shared, knowledgeable decision making that is in the best interest of the child, said Dr. David Chi, clinical director of the division of pediatric otolaryngology at the UPMC Children's Hospital of Pittsburgh.

It's notable that parent preference for surgery did not seem related to the severity of the child's sleep apnea, said Chi, who was not involved with the new research.

"This study highlights the importance of communication between parents and the surgeon, Dr. Chi said in an email. "Parents may come with many predispositions, shaped from access to information from various sources. In today's era, savvy parents have social media on their phones or home computers to obtain information on websites, blogs, or chat groups. Also, parental preferences are influenced from their primary care provider, friends and families, or prior experience with their other children."

"The surgeon needs to be sensitive about these choice dispositions," Dr. Chi said. "While surgery may be indicated and may still be the best option for a child, surgeons have to be thorough to discuss all options--both medical and surgical--with parents. Parents also have to be aware of the importance of having a complete discussion with the specialist and not let their preferences limit conversations of options and knowledge of diseases and treatment."

SOURCE: JAMA Otolaryngology - Head and Neck Surgery, online December 30, 2020.