What Is the Role of Shared Decision-Making With Parents of Children With Bronchiolitis?

SDM enables caregivers to make informed choices by providing them with evidence-based information and empowering them to participate in decision-making. Opel¹¹  described a framework for SDM in pediatrics. First, the clinician determines if the decision includes >1 medically reasonable option. If only 1 reasonable option exists, SDM is not indicated. If there are ≥2 acceptable options, the clinician then considers whether 1 option has a favorable benefit/harm ratio compared with other options. If 1 option is more favorable, a clinician-guided SDM approach is recommended, in which the clinician fully informs the parents, helps the parents express their values and preferences, but also conveys his or her recommendation. If the benefit/harm ratio of the options is equivocal, it is appropriate to use a parent-guided SDM approach, in which the clinician explains that all options are reasonable and the parent drives the decision-making process. The degree of clinician- versus parent-guided SDM is also determined by the parents’ preferences for participation in decision-making.¹¹ 

Qualitative research has identified that parents of children with bronchiolitis have substantial information needs that are often unaddressed, leading to anxiety, fear, and helplessness.^12,13  Parents have also expressed feeling uninvolved in the care of their child.¹²  Use of SDM could address parents’ information needs and empower them to participate in care. To explore the appropriateness of SDM for bronchiolitis, we focus on 3 management decisions with wide variability in clinical practice.^7,8 

The AAP clinical practice guideline specifically recommends against the use of albuterol, nebulized epinephrine, and corticosteroids. This recommendation is based on studies demonstrating that albuterol and other β-agonist bronchodilators have adverse effects, such as tachycardia and jitteriness, that outweigh the possible benefits.⁵  Similarly, corticosteroid therapy has no reliable clinical benefit for most infants with bronchiolitis.^3,5  Because not using these medications is the 1 evidence-based, medically reasonable option, there is no role for SDM in this decision per the Opel framework. However, addressing parents’ information needs by informing them about the rationale for not using these medications and eliciting their concerns has a substantial role in the provision of patient-centered care.

A major decision point in management of bronchiolitis is hospitalization versus discharge from the ED, especially for children without comorbidities who have a normal oxygen saturation, adequate oral intake, and moderate, but not severe, respiratory symptoms.^14,15,16  Based on the Opel SDM framework, there are 2 clinically reasonable options. The first is hospitalization for observation and, if symptoms worsen, initiation of guideline-based supportive therapies. This strategy may be reassuring to some parents, but it carries a risk of iatrogenic complications and may amplify stress and anxiety for other parents. Additionally, 30% of hospitalized children do not receive any guideline-based supportive therapies.⁷  The second option, discharge from the ED, avoids the risks and costs of hospitalization but has a ∼1% risk of a hospitalization soon after discharge.¹⁷  Of children without comorbidities, 0.2% subsequently require mechanical ventilation in the ICU, and overall, 0.02% of children with bronchiolitis discharged from the ED die within 14 days.¹⁴  The benefit/harm ratio of hospitalization for many children with bronchiolitis is therefore unclear. In this scenario, either clinician- or parent-guided SDM may be appropriate, based on the child’s age, oral intake, and respiratory symptoms and the clinician’s determination of whether hospitalization or discharge is favorable.

Another vital decision point is the use of continuous versus intermittent pulse oximetry for monitoring once patients are hospitalized. The AAP clinical practice guideline states that clinicians may choose to use intermittent, but not continuous, pulse oximetry for children who do not require supplemental oxygen.⁵  Although continuous monitoring would potentially identify a desaturation episode as a precursor to clinical decompensation, in a randomized controlled trial, no significant differences were found in rates of escalated care or other outcomes between continuous and intermittent pulse oximetry monitoring for infants hospitalized with bronchiolitis.¹⁸  Many parents may find security in having their child on a continuous pulse oximeter, although continuous monitoring may also increase anxiety because of the increased frequency of false alarms and subsequent decreased rest for the patient and family.¹⁹  Continuous monitoring may also be associated with increased length of stay.²⁰  Therefore, although both options might be reasonable, intermittent pulse oximetry has a favorable benefit/harm ratio compared with continuous monitoring. Hence, clinician-guided SDM is appropriate, and it is imperative that clinicians educate and adequately inform parents about the rationale for intermittent pulse oximetry to address parents’ potential concerns about this practice.

There are several major challenges to implementing SDM for management decisions for children with bronchiolitis. First, it can be challenging for clinicians to effectively communicate to parents when SDM is appropriate. For example, parents may express preferences for β-agonist bronchodilators or continuous pulse oximetry. Because there is either no role for SDM or the benefit/harm ratio favors a different option, it is imperative that clinicians clearly explain the decision-making process to parents. Second, although various studies have derived predictors for escalation of care and safe discharge from the ED,^14,15,16  it is difficult for clinicians to reliably estimate the level of care each individual child will require. With this uncertainty, it might be challenging for parents to choose between hospitalization and discharge when the benefit/harm ratio is inherently difficult to conceptualize.

Parents’ knowledge and health literacy are also important components of the SDM process. To effectively participate in SDM, parents must be adequately informed and able to understand and synthesize information. However, an ED visit and inpatient admission for a sick child <2 years old is stressful and anxiety provoking for parents. It may be unreasonable to expect a stressed and potentially exhausted parent to fully comprehend multiple management options, weigh in their own values and preferences, and actively participate in the decision-making process. The ED setting where children with bronchiolitis receive initial care also has inherent barriers to SDM, most notably time pressures to render efficient patient care in a busy, high-acuity clinical environment.²¹  In addition, the lack of previous therapeutic relationship between the parents and clinicians, both in the ED and on the inpatient service, may further impede communication and parents’ confidence in the decision-making process.

Additional research is needed to facilitate successful implementation of SDM for management decisions for children with bronchiolitis. More work needs to be done to determine risk factors for escalation of care and safe discharge from the ED and to define for which children SDM would be appropriate. With the support of these data, the next vital step would be to engage clinicians and parents in designing SDM tools, such as decision aids, which have proven to be beneficial in other scenarios in the ED, for children with head trauma.²²  Finally, studying and developing implementation strategies for SDM is warranted. Implementation of SDM can help parents of children with bronchiolitis understand and weigh the benefits and potential harms of various management options, express their values and preferences in the decision, and support their participation in decision-making. Use of SDM with parents of children with bronchiolitis can improve patient-centered care for bronchiolitis by aligning medical decisions with informed parents’ values and preferences.