The Journal of ExtraCorporeal Technology No 56-3 | Page 23

98 R . K . H . Shappley et al .: J Extra Corpor Technol 2024 , 56 , 94 – 100

Table 4 . Neurodevelopmental testing .

Total cohort ( n = 67 ) 2011 – 2020

Before STEP ( n = 36 ) 2011 – 2016

After STEP ( n = 31 ) 2017 – 2020 p-value

* 10 patients were excluded from the analysis due to delays in obtaining hospital appointments during the beginning of the pandemic .

in a non-European healthcare model . It provides a roadmap for single centers with limited resources to develop a comprehensive pediatric post-ECMO follow-up . The primary finding is that STEP successfully increases inpatient and outpatient compliance with STEP follow-up guidelines . Patients receiving complete and time-appropriate neurodevelopmental testing after initiating the STEP were statistically significant . It allowed for early identification of deficits and referral for appropriate therapies . We observed a substantial increase in neurology and audiology inpatient evaluations . There was a significant increase in P . T ., O . T ., S . L . P ., and audiology referrals at discharge . The lack of increase in neuroimaging was attributed to our institution ’ s guidelines that limited neuroimaging use for patients with clinical concerns .

The secondary finding is that rates of developmental delay are consistent with published literature [ 5 ] and are similar in before and after STEP groups with improved timeliness of evaluation . However , current literature demonstrates that increased neurocognitive deficits appear with age , and future follow-ups could reveal more deficiencies . A response bias , in which patients with concerns are more likely to come to appointments , could be present but would be expected across both groups . Neurodevelopmental testing was decentralized before STEP implementation , but STEP provides standardized referral routes for patients to a neuropsychologist with expertise in ECMO outcomes and prompt access to resources . The evolution of ECMO indications to include children with higher severity of illness and additional pre-existing comorbidities may lead to increased deficits in ECMO survivors . Therefore , a robust ECMO follow-up program is essential to provide optimal care for ECMO survivors .

We noted a difference between the before and after groups in the number of pediatric patients consistent with the temporal evolution of indications and use in the pediatric population worldwide [ 19 ] and increased V . A . cannulations due to the withdrawal of Origen double VV cannula from the market and lack of an alternative product in the neonatal population [ 20 ]. However , these changes do not affect ECMO follow-up practices . Patients during the COVID-19 period who lacked STEP consult and non-English speaking families were excluded from the analysis to ensure we looked at the results of the STEP program . They were provided with the appropriate follow-up services and Neuropsychological follow-up .

We now realize that there are long-term effects of the ICU stay and the supportive therapies , surgeries , and treatments on the patient and their families [ 21 – 23 ]. Comprehensive followup programs with early identification of deficits and treatments have been shown to make a difference in the long term after congenital heart surgery and acquired neurological injury [ 24 – 26 ]. Multiple society recommendations and guidelines strongly recommend using a longitudinal and multidisciplinary follow-up [ 1 , 15 , 27 , 28 ]. ECMO patients are at high risk of developing neurological injury , and current evidence and guidelines oblige us to provide optimal post-discharge follow-up . Our study adds to this literature and shows that optimal ECMO follow-up and neurodevelopmental assessment and treatment can be provided in the US healthcare model .

The development of STEp needed consultation and buy-in from stakeholders to ensure its long-term success . We utilized the existing relationships between ECMO , Congenital heart surgery , and Neurodevelopment programs to gain access to personnel , services , and clinic time . Our ECMO , ICU , and hospital leadership saw value in this process and supported it through multiple leadership and personnel changes and COVID disruption . Our model may be supplemented by nurses , ECMO team members , or physician extenders – advanced nurse practitioners , nurses , or physician assistants to coordinate care and family education and discussions depending on the resources available at the local institution . A successful program will need a dedicated program leader who understands the importance of a follow-up program to meet the needs of ECMO survivors .

Study limitations include the small sample size and singlecenter approach . Our study describes the development of post- ECMO care programs in the US health system and may be less relevant to other healthcare models . The neurodevelopmental baseline of patients before ECMO could not be assessed . Therefore , it limits our understanding of whether the neurodevelopmental changes were due to the primary etiology or ECMO . Compliance with outpatient therapy referrals could not be confirmed due to decentralized follow-up . The COVID-19 pandemic resulted in hospital , staffing , and personal protective equipment limitations , leading to delayed screening and outpatient follow-up . Several patients lacking STEP consults were excluded , highlighting the importance of a larger team to reach all patients . ECMO technology and indications have evolved over the study period , which might have led to differences in the two study populations ; however , the practice and implementation of the follow-up process have remained the same .

In conclusion , our study shows that an intentional discharge protocol is feasible and successful for the ECMO population . Implementation of small and methodical steps to identify and provide early intervention for developmental deficits can improve patients ’ long-term outcomes [ 14 ].