QUESTION: As a NICU therapist that also does acute pediatrics and outpatient swallow studies, we always have a lot of follow up patients, NICU graduates, etc. I’ve had a lot of infants/peds coming in for follow up swallow studies after “silently aspirating thin and/or slightly” and have been on a thickened diet. The families report their outpatient therapist weaned them off the thickener during therapy and discharged them. They are returning for their repeat MBSS from MD recommendation because it’s “due” or to be “cleared” or because infant with persistent illness, etc. 90-100% of them are still silently aspirating. So question… as an outpatient/home health therapist I’m truly asking for ideas or thought processes for taking patients off thickened diet without follow up mbss (patients with silent aspiration- which is usually always the case). Is it an assumption that they won’t get in? Access? Poor family buy in or follow up? This is NOT a post to stir up division but the opposite. Truly wanting to bridge this gap.
CATHERINE’S ANSWER:
This clinical “conundrum” often comes up during my VFSS Seminar and is a question that asks us to think critically and at the top of our profession.
With any patient on thickened liquids, we always want to understand the swallowing pathophysiology objectified initially in radiology that led to the need for thickening and how precarious that physiology was, even with thickening. Those infants/children who have enduring multiple complex comorbidities are often silent aspirators. Within this high-risk patient group, we often find the weaning protocol doesn’t build in the objective data necessary to determine the true impact of a change in amount of thickener on swallowing physiology and therefore, on airway protection during a ***true feeding*** (often 30 minutes or more). The objective data from a VFSS about the impact of weaning thickener can be often surprising and indeed is often necessary especially for patients with complex histories…. versus weaning based on subjective/clinical impressions only. The risk-benefit ratio of clinical weaning for each patient must be carefully considered.
The team at Boston Children’s has provided us with research to help inform our practice related to clinical weaning. This paper referenced below details the intervention—a protocol for weaning thickened fluids via clinical data. Its implications are far reaching, however, and its recommendations require critical thinking in their application.
Wolter NE, Hernandez K, Irace AL, Davidson K, Perez JA, Larson K, Rahbar R. A Systematic Process for Weaning Children with Aspiration from Thickened Fluids. JAMA Otolaryngol Head Neck Surg. 2018 Jan 1;144(1):51-56.
Like any other protocol, the key is considering when to utilize a protocol as a guide and considering when not to; that is, when doing so may adversely affect the risk-benefit ratio. My physician mentors over the years have referred to this process as the “art and science of medicine”. It requires us to ask how we thoughtfully apply the findings of any study to our clinical reasoning for each patient individually, to minimize risk of adverse events.
Clearly our repeat studies according to the AAP must be completed with thoughtful justification and careful attention to risk-benefit ratio, especially with infants. It is best practice as stated in the article that “children should be transitioned to non-thickened diets as soon as it is safe to do so.”
However, reducing fluid thickness solely “based on a patient’s’ clinical response” is worrisome to me.
In pediatrics, like in adult care, patient A is not the same as patient B, even though they both have been placed on thickened liquids for clinically sound reasons. Those infants/children with more complex co-morbidities, those who silently aspirated, and those with more precarious swallowing pathophysiology would potentially have greater risk for airway invasion with changes based on clinical data alone. And there may not be clinical suspicion that the wean increases risk, as the weaning protocol proceeds. Universal application of the weaning protocol without a very clear consideration regarding these fragile high-risk feeders may inadvertently increase risk for airway invasion.
Duncan et al in their 2018 study (Duncan, D. R., Mitchell, P. D., Larson, K., & Rosen, R. L. (2018). Presenting signs and symptoms do not predict aspiration risk in children. The Journal of Pediatrics, 201, 141-146) reported that “Presenting symptoms are varied in patients with aspiration and cannot be relied upon to determine which patients have aspiration on VFSS. The CFE (clinical feeding evaluation) does not have the sensitivity to consistently diagnose aspiration”. Their findings would likely apply to post-swallow study decisions made without benefit of objective data, and that is worrisome.
Most recently, a team at Boston Children updated its 2019 paper on thickening considerations (see citation below), and among their recommendations was this statement:
“Implementation of a systematic weaning protocol may also result in a reduction in instrumental assessments for the patient which may reduce their exposure to ionizing radiation if re-evaluating via the videofluoroscopic swallow study. However, providers must remain cautious if using this approach in infants and young children with silent aspiration, given the difficulty in monitoring symptom change while weaning in these patients…The balance between viscosity and flow rate in aerodigestive patients with oropharyngeal dysphagia needs to be based on instrumental assessment of swallow safety such as videofluoroscopic swallow study.”
Duncan, D. R., Jalali, L., & Williams, N. (2024). Gastrointestinal Considerations When Thickening Feeds Orally and Enterally. Pediatric Aerodigestive Medicine: An Interdisciplinary Approach, 1-35.
Pados (2019, see citation below) further highlights the importance of assessing a feeding regimen under instrumental assessment: “When thickening of liquids is indicated, providers and families need data obtained from an instrumental assessment to guide evidence based decision-making about the safest thickened liquid consistency and type of nipple to offer to maintain a flow rate that is safe for the infant” (Pados BF, Park J, Dodrill P. Know the flow: Milk flow rates from bottle nipples used in the hospital and after discharge. Adv Neonatal Care. 2019;19(1):32–41).
Perhaps most worrisome is the possible implication from Wolters’ conclusions is the implication that the value of a VFSS is to identify bolus misdirection and aspiration, rather than to objectify swallowing physiology and pathophysiology as a basis for optimal interventions and their modification. The risk-benefit ratio of a repeat VFSS must indeed be carefully considered, but we must also consider the critical impact of that objective data, about physiology, on any changes in interventions we might consider.
The more I learn, the less black and white answers I have, and I think that is good. For each patient, we will need to continue to develop an algorithm for that patient, that best minimizes risk, in the setting of that child’s unique co-morbidities, history, and the nature of the swallowing pathophysiology objectified. Pausing to consider all the pieces for each unique patient, and reflect, will always be critical.
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