Why PFD assessment and management vary for each patient and community

Published by Jaclyn Pederson, MHI, chief executive officer on Dec 01, 2023

Reporting on our findings from researching the landscape of pediatric feeding disorder treatment

Every day at Feeding Matters, we hear stories from families and professionals of progress and struggles, of success and setbacks, of those clinicians who helped and of those who faltered.

A zigzag line along an upward trajectory of progress is typical for families of children with pediatric feeding disorder (PFD). The journey is never simple, but it’s much easier with the right support.

Ensuring that more families get the right support from the start underpins every part of our work at Feeding Matters. Whether raising awareness, advocating for better insurance coverage or common terminology, our goal is always to help every family access the feeding care their child needs.

To get there, we need more research.

Building a body of research-based evidence on children’s needs and treatment options is what we can point to when we demand better insurance coverage. Data on education pathways is how we partner with national associations to improve clinical education on feeding as a specialty. And research is how we ensure every child gets the care they need at the right time.

That’s why I’m so excited about the November 2023 study we published in the journal Child: Care, Health and Development, an international, peer-reviewed journal for pediatrics covering children’s health and development. The study, Assessing the US treatment landscape for paediatric feeding disorder: A survey of multidisciplinary providers, documented the data on what options exist for patients with PFD.

None of the findings are shocking. All of it aligned with our expectations of what we hear from families and clinicians in the field. However, data means more than anecdotal experiences when it comes to understanding the landscape of PFD treatment.

Stories move people. But they don’t always move institutions. Data does.

Now that we’ve documented what treatment is happening in communities, we can build on that research with the ultimate goal of improving patient pathways and treatment outcomes.

The goal of assessing the treatment landscape for PFD

Most children with pediatric feeding disorder are treated in the communities where they live – often by occupational therapists (OTs) and speech and language pathologists (SLPs), often through early intervention (EI). Most research about PFD in the U.S. comes from pediatric psychologists working in a small number of institutions providing multidisciplinary treatment for PFD across the United States. Spots in these programs are limited, and waiting lists are long.

This leads to a disconnect between PFD research and the treatment that most PFD patients actually receive. What’s happening on the ground in communities is different from the treatment occurring in multidisciplinary centers –– and from what’s getting researched and published.

Aiming to ensure there is a common terminology and improving treatment through partnering, we knew we needed to start by defining the treatment landscape and building an evidence base. Our goal for the study was to determine the following:

  1. Who is treating children with PFD

  2. What are the treatment interventions

The methodology of assessing the PFD treatment landscape

To determine the landscape for PFD in the U.S. and identify provider and treatment delivery characteristics, we collected primary data through a web-based survey targeting providers from all four PFD domains –– medical, nutritional, feeding skill and/or psychosocial between January 2022 and March 2022.

In total, 815 clinicians completed the survey from January to March 2022. Only those practicing in the U.S. –– 83% –– were included in this study. Clinicians from every U.S. state were represented.

Survey respondents answered 71 questions regarding patient, provider and treatment characteristics.

As a follow-up to the survey, we conducted focus groups to better understand PFD treatment occurring in communities throughout the U.S.

What we found by researching the PFD treatment landscape

As expected, survey results showed that most PFD treatment occurs at the community level through EI or outpatient feeding therapy rather than in multidisciplinary programs. OTs and SLPs provide most of the feeding therapy through sensory and responsive feeding. These are not well defined treatment interventions or protocols so for the purpose of this study, we defined the two as follows:

Responsive feeding: Focuses on establishing positive feeding relationships and mealtime interactions which honor the child’s autonomy and need for intrinsic motivation to support developmentally appropriate feeding skills and nutritional intake.

Sensory feeding: Use of systematic play-based sensory interventions to promote feeding skills and dietary diversity through graded changes in food properties and presentation.

Tracking progress varies. Goal achievement, caregiver report and clinical judgment represented the most common tracking methods reported across all providers. Less common was the reported use of standardized outcome measures, clinic-specific measures or biospecimen labs.

The most frequent length of PFD treatment was 6–12 months (37.6%), followed by 6 months or less (32.2%).

Roadmap for next steps

What’s clear from this new study and anecdotal evidence is that the relatively new field of treating pediatric feeding disorder lacks best-practice guidelines for assessing and managing PFD or even the tools to help clinicians do so. The absence of guidelines makes the triage process and medical home management for pediatricians challenging as well. Gaining a better understanding of the community treatment landscape can help to identify clearly these practice gaps and inform future research on assessment and treatment.

Achieving our goal to get every child with PFD the care they need at the right time is a massive undertaking. To help us get there, below are our organization’s goals for the next 15 years:

  1. Establish best practices for assessing and managing PFD.

  2. Ensure all children are screened for PFD at well visits.

  3. Ensure children with PFD qualify for early intervention.

  4. Define a specialty pathway for accredited PFD specialists.

  5. PFD qualifies for Early Intervention.

  6. Secure more federal research dollars allocated to funding.

  7. Inclusive insurance coverage.

All of these goals depend on building greater awareness about PFD. Making sure PFD becomes a household name would open doors to more research funding, better insurance coverage and improved care.

Researching the landscape of PFD treatment underscores just how much work there is to do to ensure children with PFD get the care they need. It’s also the first step in getting there.