SCCM Resource Library-Understanding the ECMO, Recovery, and Outcome Experience of Pediatric Respiratory ECMO Survivors

Video Transcription

Good morning, and thank you for listening in. My name is Claire Hennigan, and I'm a Pediatric Critical Care Medicine Fellow at Columbia University Medical Center.  I will be presenting my current research titled Understanding the ECMO Recovery and Outcome Experience of Pediatric Respiratory ECMO Survivors.  I have no financial relationships to disclose.  As Society of Critical Care members know, extracorporeal membrane oxygenation, or ECMO, is an established treatment for severe refractory, respiratory, or circulatory failure.  Advances in our field mean that more children are receiving this support than ever before. Although early mortality remains high, 10-year survival rates now approach 90%  for those who survive to three months post-discharge. With improved survival has come a growing concern for morbidity and its impact on the trajectories of survivors.  The 2021 ELSA Registry Report demonstrates the continued growth in both the number of ECMO centers and total ECMO patient volume.  As you can see by the blue line in the graph pictured here, there's been an increasing number of ECMO patients over time. Importantly, the report also highlights improved survival  across all pediatric ECMO subpopulations compared to years past, with pulmonary ECMO patients having the greatest survival to discharge at 66%.  Despite having the greatest survival to discharge, outcomes in the pediatric respiratory ECMO population are not well described. This is due to one, their clinical diversity,  and two, their lack of structured follow-up, particularly when compared to their cardiac and NICU counterparts. While literature is limited, there is reason to believe  that these children encounter functional or neurodevelopmental impairment following ECMO. A sense of this impact was captured in a 2020 study  of a mixed pediatric ECMO survivor population, 21% of whom received respiratory ECMO. 74% of parents surveyed reported developmental concerns about their child.  As the graph demonstrates, these concerns range across a broad spectrum that affect daily functioning.  The knowledge gap surrounding respiratory ECMO patients thus motivated us to examine this population further. Our aim was to describe the functional outcomes  and experiences of childhood respiratory ECMO survivors and their parents in order to inform support and counseling for families before, during, and after ECMO.  To answer these questions, we designed a cross-sectional mixed method study of patients who received ECMO for respiratory failure at less than 21 years of age  at our single pediatric ECMO referral center. To recruit patients, we collaborated with treating physicians to introduce the study.  We then conducted semi-structured interviews with parents. Afterwards, they completed the Vineland-3 to assess their child's functional status.  Interviews range from one to two plus hours in length and consisted of open-ended questions that were followed up with probing questions.  Interviews were audio recorded, transcribed verbatim, and entered into Envivo 12 software. They were then analyzed by two investigators  using the six-phase model of thematic analysis. For those that are unfamiliar, this approach is detailed in the graphic on the right  and consists of first, familiarizing yourself with your data by transcribing, reading, and rereading the data. Second, generating initial codes  such as interesting features in the data. Third, searching for themes. Fourth, reviewing these themes.  Fifth, defining and naming the themes. And sixth, producing the report as it relates to your research question.  Patient inclusion is detailed in the diagram here. Patients were excluded by the criteria listed. Of eligible ECMO patients, 22 met inclusion criteria and survived to discharge.  12 participants were interviewed, and 11 of these 12 completed the Vineland. To get a sense of the demographic and clinical characteristics  of the respiratory ECMO population at our center, we reviewed the charts of all patients who met inclusion criteria. As you can see, there is a wide range of ages  at which patients required ECMO, and the majority received VV ECMO.  ARDS and pulmonary hypertension were the most common diagnoses leading to respiratory failure requiring ECMO. The primary follow-up specialist seen by survivors following discharge  was most frequently a cardiologist or pulmonologist, while less common was a primary care pediatrician, an oncologist, or other, such as ENT or rheumatology.  One patient was lost to follow-up.  Moving into our study findings, we found a wide range in adaptive functioning in participants using the Vineland-3. This is a validated assessment tool  that assesses adaptive behavior, which is the performance of the daily activities required for personal and social sufficiency.  Generally speaking, higher scores, around 100 or greater, indicate that functional abilities are on par or advanced for age, while scores less than 85  are considered moderately low to low and indicate a significant skill deficit when compared to similar aged peers. Here's an example of one participant.  I will first walk you through the table to share how we approach thinking about the Vineland score for each patient in the context of their medical history and hospitalization.  They were just under one year old when put on ECMO. Pre-existing developmental comorbidities included prematurity.  Their baseline functional status scale, or FSS score, was seven, with six being normal. Their course was 22 days long, and an MRI obtained following decannulation  showed possible hypoxic injury. Their overall Vineland score was 77, translating to a moderately low adaptive level and a score 1.5 standard deviation below the mean for age.  Looking at all participants, you can see that adaptive levels post-ECMO, as determined by the Vineland-III, covered a wide range. While our small population  limits us from drawing conclusions, you may note that some participants score on the much lower end, such as those with prior developmental delay, prematurity, or trisomy 21.  In addition to looking at adaptive behavior, we performed a thematic analysis of the parental respiratory ECMO experience with an eye to what we could potentially change or improve.  We then organized this into three epochs with significant themes outlined here. Advanced knowledge, or lack thereof, emerged as a significant theme  shaping parents' pre-ECMO experience. Seven of 11 parents expressed having no prior knowledge of ECMO. Five parents expressed wanting an advanced warning about ECMO.  In framing this wish, all five recalled the challenges they faced with comprehending information at the time of cannulation. In addition to the quote seen here,  another parent shared, I wish they would have prepared me a little bit better. They just woke me up and basically were like, hey, sign this consent. We have to do this.  Of the six parents who did not express desire for a heads up about the need for ECMO, three were transferred from an outside hospital specifically for ECMO,  and two had consults placed in advance of cannulation.  Also significant in the pre-ECMO stage was the concept of consenting in a crisis. Nine parents described challenges comprehending information at this time.  They reported overlooking, not receiving, or not processing information about ECMO due to the life and death nature of the situation. Another parent echoed the quote shared here,  saying, it's so much information at the time, and you're numb. Parents also cited the long cannulation process as exacerbating their stress and trauma,  suggesting that providers give a more accurate estimation of the time required for cannulation to families in the future.  Following cannulation, parents' shock about seeing the ECMO circuit  emerges the most striking finding. All 11 parents interviewed expressed feeling either overwhelmed, frightened, or surprised upon seeing ECMO for the first time.  One likened it to, quote, something you just see in movies, and another described the trauma of seeing their child cannulated as feeling like, quote, am I being punked?  While another said, that machine was like this big monster.  Beyond the visual shock, parents frequently reported wanting to be better prepared about what to expect while their child was on ECMO. Physical challenges, such as immobility,  fluid retention, and skin breakdown were commonly mentioned. As one parent said, maybe it would be helpful to be like, ECMO can be temporary. Sometimes they have to be on longer,  but these are the kinds of things that we might have to treat because being on ECMO for this long can cause this and this.  Parents also struggled with prognostic uncertainty during their child's ECMO course. Three parents spoke of the challenges of not knowing what their child's functional  or cognitive state would be after ECMO. In addition to what one shared here, another explained, not knowing what I was gonna get back,  if I would get her back in a kind of fudgitive state, that was hard.  In examining how families learned about ECMO, the biggest takeaway was that parents want written or visual resources. Eight parents reported that a written resource  would have been helpful to their education. Those who did not endorse this stated that they researched ECMO independently, though that was not always perfect.  As one parent explained, I did a lot of research online, so maybe if there was a pamphlet, I wouldn't have had to research. Google always misleads you into thinking the worst.  In addition to a written resource, parents also highlighted the need for personnel dedicated to supporting families, such as an ECMO liaison.  As one parent stated, it would have been helpful, quote, if they had some type of support system where they actually had a person sit down and tell you,  this is what you're gonna see, this is what you're going to expect. Parents also spoke of the strategies taken by themselves or the medical team that facilitated their learning.  Seven parents identified their own research as guiding their education, while five parents said the ability to ask questions was pivotal to their learning.  Four parents also spoke of the medical team as being central to their education. The helpful approaches that the team used included one, regular updates and explanations,  two, avoiding the use of jargon, three, anticipating the family's questions and the next steps in the child's course, and four, delivering consistent messages.  Once the ECMO course was complete, the challenges faced by survivors and their families were not over. Psychological challenges were present  following hospitalization for both parents and survivors, with five reporting that they sought therapy. Of those who sought support,  all spoke to the challenges of finding a provider. As one parent explained, maybe it would have been a big help to get that little piece, that piece of the puzzle was missing  and I had to find it, find a therapist. A medical home that included continuity with a primary provider had multiple benefits for ECMO survivors.  Parents described how helpful it was for their primary doctor to know their child's history. As the parents of a patient who was followed closely  by the pulmonary hypertension team said, without our primary, I don't know how we would have done it because trying to explain to a pediatrician  what's going on with so many different specialty doctors and all these things, they just get confused. This experience contrasted with a patient  who did not have an established medical home, whose parents described the challenge of retelling her daughter's ECMO course every time they met a new doctor saying,  I ended up going to a brand new team that didn't know her history. Parents also described taking on the role of care coordinators, with one mother likening herself  to a secretary, nurse, doctor, and mom all in one. This contrasted with a patient who followed closely with her pulmonologist. Her mother shared how the primary doctor  facilitated her daughter's referral to mental health care saying, for her, it was easier to schedule the therapist because she was referred by her doctor.  Finally, parents spoke of the reassurance they gained by having a medical home. As one parent said of the child's medical team, they've really, really had their act together.  It's very reassuring because when you come home, you're like, oh my God, what's life going to be like? But they really got their stuff together.  From the time of decannulation to when survivors arrived home, parents painted a vivid picture of the magnitude of recovery that their child faced.  These covered physical aspects, and as one survivor shared, I wish I knew a better... In reviewing these findings, we identified four major areas that we may begin to change  in order to improve how we guide families through their child's ECMO experience. First is the challenge of decision-making at the time of consent.  Acknowledging that it is extremely difficult, parents to absorb, process, and retain information at this stage, we can begin to better prepare families  by first, notifying parents at the time we consult ECMO, and second, incorporating visual aids in our explanations at the time of consent. The second actionable area is education.  Given that the majority of parents went out of their way to look things up themselves, there's a specific opportunity for improvement. As we know, independent research  is not without its own pitfalls. Interventions to improve ECMO education include creating an interactive family-focused resource such as a web app.  Centers may also consider adding an ECMO liaison in light of parents' requests for someone dedicated to preparing them for what to expect.  This role could be filled from a variety of disciplines, including palliative care teams, chaplains, and social workers.  Our third major finding is the importance of a medical home. We can begin to facilitate the transition to outpatient care following ECMO  by establishing a provider with interdisciplinary resources at discharge. Specifically, this should be a provider who can meet the needs of ECMO survivors.  These needs include care coordination, social work and case management, and surveillance for developmental delays or mental health concerns. For patients who would otherwise  go back to their pediatrician, this may warrant a referral to complex care following ECMO.  And the fourth actionable area is mental health. In light of our study findings, initiating a streamlined referral process  to mental health services will be essential moving forward.  The clinical diversity that has made respiratory ECMO survivors a difficult population to study also poses challenges to drawing a conclusion  about the impact of ECMO on their outcomes. That is, in such a medically diverse group, how do we isolate ECMO as a variable distinct  from their comorbidities or the critical illness that got them to the PICU? Despite these challenges, it is no less important to understand their experiences.  Knowing the challenges that unite survivors shows us how we can improve the counseling we provide families as critical care physicians at each stage of their ECMO course.  As we look to next steps, assessing survivor functional outcomes through large-scale prospective studies, such as the ASCEND trial, will be essential to shed further light  on outcomes for children after respiratory ECMO. By documenting this information, we will be able to provide better prognostic insight  to families through the decision-making process.  Thank you for listening today. For more information on this subject, please refer to the publications listed here.

Video Summary

The speaker, Claire Hennigan, presents her research on understanding the experiences and outcomes of pediatric respiratory ECMO survivors. ECMO is a treatment for respiratory or circulatory failure, and its use in children is increasing. However, there is limited information on the outcomes of pediatric respiratory ECMO patients. Hennigan's study aims to describe the functional outcomes and experiences of these survivors and their parents. They conducted interviews and used assessment tools to evaluate adaptive functioning. The study found a wide range of adaptive levels among participants, and parents expressed challenges in understanding and consenting to ECMO. The findings suggest the need for improved support and counseling for families before, during, and after ECMO.

Asset Subtitle

Cardiovascular, Procedures, Pediatrics, 2022

Asset Caption

INTRODUCTION: As more children survive extracorporeal membrane oxygenation (ECMO) for severe cardiopulmonary failure, morbidity has been emphasized as an important outcome in this population. Neurodevelopmental problems have been recognized in cardiac and neonatal ECMO survivors through established follow-up programs. Less is known about these problems, as well as related challenges faced by patients and families, after respiratory ECMO. Better understanding of the recovery course after respiratory ECMO is essential to inform follow-up guidelines and counseling provided by critical care physicians. METHODS: Cross-sectional, mixed-methods study of respiratory ECMO survivors from a regional pediatric ECMO referral center. All survivors less than 21 years who received ECMO for respiratory failure in the PICU from 2014 to 2020 were eligible for inclusion. Neonates and children who required ECMO for cardiac indications or during CPR were excluded. Parental experiences of ECMO and the recovery period were explored via semi-structured telephone interviews. Functional status was assessed via the Vineland Adaptive Behavior Scales (VABS-3) Parent/Caregiver Form. RESULTS: Of 300 ECMO patients, 96 (32%) required ECMO for respiratory indications, of whom 22 (23%) survived to discharge and were eligible for inclusion. Age at ECMO ranged from 3 months to 20 years. Diagnoses included ARDS (45%), pulmonary hypertension (32%), status asthmaticus (9%), airway pathology (9%), and cystic fibrosis (5%). Fifteen patients (68%) were successfully contacted and 10 interviews completed. Common themes included the desire for anticipatory communication before ECMO, uncertainty regarding functional outcome, parental psychosocial stress, and variability in follow-up services provided. VABS-3 results varied widely, with survivor mean scores approximately 1.5 SD below population norms across each subdomain and overall (mean overall score 79.0, range 53-111). CONCLUSION: Children who survive respiratory ECMO share common challenges around functional rehabilitation, parental psychosocial stress, and uncertainty about expectations following ECMO. Functional scores are generally below population norms, but cover a wide range. Increased understanding of these challenges and limitations will enable us to better advise families during and after ECMO.

Meta Tag

Content Type Presentation

Knowledge Area Cardiovascular

Knowledge Area Procedures

Knowledge Area Pediatrics

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Tag Extracorporeal Membrane Oxygenation ECMO

Tag Pediatrics

Tag Extracorporeal Life Support

Tag Outcomes Research

Tag Respiratory Failure

Tag Cardiothoracic Critical Care

Year 2022

Keywords

Claire Hennigan

pediatric respiratory ECMO survivors

treatment for respiratory or circulatory failure

functional outcomes

experiences of survivors and parents

	Society of Critical Care Medicine 500 Midway Drive Mount Prospect, IL 60056 USA Phone: +1 847 827-6888 Fax: +1 847 439-7226 Email: support@sccm.org	Contact Us About SCCM Newsroom Advertising & Sponsorship DONATE	MySCCM LearnICU Patients & Families Surviving Sepsis Campaign Critical Care Societies Collaborative	GET OUR NEWSLETTER
© Society of Critical Care Medicine. All rights reserved. \| Privacy Statement \| Terms & Conditions The Society of Critical Care Medicine, SCCM, and Critical Care Congress are registered trademarks of the Society of Critical Care Medicine.