Pediatric Cardiology Board Review Step Up of Saturations

In the recent era of built middle disease management, no defect has undergone more dramatic improvement in outcomes than hypoplastic left middle syndrome (HLHS) and related variants that require staged palliation for unmarried ventricle centre disease (SVHD) with aortic hypoplasia. Stage 1 palliation (S1P) includes the surgical Norwood procedure or the hybrid culling. The Norwood process consists of atrial septectomy, Damus‐Kaye Stansel connectedness of pulmonary and aortic roots, aortic arch reconstruction, ligation of the ductus arteriosus, and placement of a modified Blalock‐Taussig shunt or correct ventricle to pulmonary artery shunt. The hybrid procedure includes stenting of the ductus arteriosus, pulmonary artery banding, and airship atrial septostomy. Also included in the grouping of shunt‐dependent SVHD patients are single ventricle lesions that require surgical systemic‐to‐pulmonary shunt placement or stenting of the ductus arteriosus. Advancements in care span operative, postoperative, and interstage management. Earlier 2000, the postdischarge care provided later Norwood S1P, lacked the level of surveillance needed to manage this high‐risk population. Due to published mortality rates as high as 16% between discharge after S1P and stage ii palliation (S2P), Ghanayem and colleagues (2003) adult an innovative home monitoring strategy.^{ane , 2} The foundations of interstage home monitoring (IHM) are routine caregiver home surveillance of oxygen saturations, enteral intake, and weight alter during the interstage period; early healthcare team notification of any aberrant parameters labeled every bit "red flags"; or other changes in clinical condition. This heightened in‐domicile surveillance augments conventional outpatient management to notice physiologic changes that may precede hemodynamic decompensation in high‐take chances infants with shunt‐dependent SVHD. IHM programs, using family unit and healthcare provider appointment, have led to improved survival to S2P for infants who have undergone either Norwood procedure or hybrid process S1P, for HLHS and related variants.^{3 , 4 , 5}

Shunt‐Dependent Physiology and Associated Interstage Risk Factors

The physiologic claiming associated with shunt‐dependent unmarried ventricle, besides referred to as functionally univentricular centre disease, is the persistence of parallel apportionment that extends across the surgical hospitalization to shunt takedown at S2P. Inherent to parallel circulation are disquisitional relationships betwixt oxygen consumption, pulmonary claret flow, systemic blood flow, partially oxygenated arterial claret (Sao ₂), systemic venous saturation, and pulmonary venous saturation. Sao ₂ depends on the residue between systemic and pulmonary flow, lung health, and systemic venous saturation. The most life‐threatening risk associated with shunt‐dependent SVHD, particularly with a modified Blalock‐Taussig shunt or ductus arteriosus stent, is an abrupt reduction in pulmonary blood menses, thus highlighting the importance of monitoring Sao ₂ trend during the interstage menstruum. A more gradual reduction in pulmonary claret flow or pulmonary venous desaturation will also lead to a fall in Sao _ii. This reduction in Sao ₂ is dependent on an power to increase systemic blood period to maintain tissue oxygen delivery. Disability to augment systemic blood flow will result in lower systemic venous saturation and further reduce Sao ₂. The inefficiency of parallel circulation combined with cyanosis, express myocardial reserve, and autonomic responses to stress, places the infant with shunt‐dependent circulation at risk for critical impairment of oxygen delivery.

Multiple cardiac and noncardiac causes have been implicated in interstage death. Most common are remainder or recurrent lesions and development of intercurrent childhood illness. Restrictive atrial communication, curvation obstruction, obstructed shunt catamenia, pulmonary artery distortion, atrioventricular valve insufficiency, and arrhythmias have each been associated with interstage mortality (Figure 1).^{i , 4 , 6 , 7} Of the ≈2000 infants with shunt‐dependent SVHD enrolled in the National Pediatric Cardiology Quality Comeback Collaborative (NPC‐QIC) Phase 1 registry, 17% had at to the lowest degree one unplanned interstage intervention with the bulk being catheter‐based. The almost mutual surgical reintervention was modified Blalock‐Taussig shunt revision or placement, and the most common catheter intervention was on the aortic arch.⁶ The Built Heart Surgeons' Lodge identified a 25% incidence of arch reintervention at a median age of 4.3 months in those who had Norwood palliation.⁷ Single heart reports and the multicenter Pediatric Heart Network Single Ventricle Reconstruction trial report a higher incidence of interstage mortality in infants who underwent modified Blalock‐Taussig shunt compared with the right ventricle‐to‐pulmonary artery shunt.⁸ Whether the mechanism of increased bloodshed with the modified Blalock‐Taussig shunt is predominantly because of impairment of coronary perfusion or shunt obstruction remains unknown. Noncardiac causes such as poor feeding and acquired childhood gastrointestinal or respiratory illnesses that result in hypovolemia or acute hypoxemia take too been implicated as causes for interstage death.^{ix , x} Any of the aforementioned processes may critically influence systemic vascular resistance, increase metabolic demands, and potentiate progressive hypoxia or shock, either hypovolemia or cardiogenic, in the infant with S1P physiology.

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Effigy one. Pathophysiology associated with changes in oxygen saturation for shunt‐dependent single ventricle heart defects.

The figure illustrates differential diagnoses to consider when oxygen saturation thresholds are breached after Norwood palliation with a modified Blalock‐Taussig shunt for hypoplastic left heart syndrome. Similar pathophysiologic considerations are applicable to the right ventricle to pulmonary artery shunt, hybrid palliation, and other shunt‐dependent single ventricle variants. Used with permission from Texas Children's Hospital. Copyright © 2019 Texas Children'southward Infirmary.

Interstage Abode Monitoring Metrics and Red Flags

IHM was initially implemented for the purpose of reducing mortality, and this continues to be the nearly reported metric.^{iii , 10 , 11 , 12} In‐home utilize of pulse oximetry to discover excessive hypoxia and infant scales to detect weight loss remain standards of monitoring. Tracking weight tin can identify dehydration besides equally somatic growth failure which has been modifiable.^{12 , 13} Boosted interstage metrics include middle rate trends, adequate oral intake (≥100 mL/kg per day), and occurrence of major events with serious, or fifty-fifty fatal, consequences (eg, cardiac arrest, arrhythmias, sepsis, or thrombotic events).

Healthcare team consensus determined physiologic parameters to be monitored, and concerning changes in those parameters are denoted every bit "red flags" (Table i). Any breach of these criteria detected past caregivers should trigger notification of the healthcare squad. These parameters may vary somewhat based on infant‐specific physiology or program‐specific management simply commonly caregivers are instructed to notify the healthcare team if any red flags or other unusual symptoms arise.

Tabular array 1. Mutual Interstage Home Monitoring Ruby Flags^{four , x , 14 , 15}

Red Flags
Oxygen saturation ≤75%a
Failure to gain 20 m (=0.02 kg) in iii d
Weight loss ≥30 m (=0.03 kg)
Enteral intake <100 mL/kg per d
Cyanosis, pallor
Irritable, fussy
Diarrhea or vomiting
Increased sweating
Respiratory changes (tachypnea, distress)
Temp >100.4°F

Inpatient Training for Interstage Dwelling house Monitoring

Medical Readiness for Discharge

Criteria for discharge to IHM vary past institution and some infants may not exist candidates for home management. At a minimum, infants should demonstrate cardiac stability with adequate oxygen saturations, adequate weight proceeds on a stable feeding regimen, and no inpatient alienation of carmine flag criteria for monitored metrics. Before discharge echocardiography should be completed to appraise for known chance factors for adverse outcomes such as tricuspid regurgitation and ventricular dysfunction,¹ likewise every bit residue lesions such as aortic coarctation, atrial septal brake, and shunt or branch pulmonary avenue stenosis.^{16 , 17} Noesis of the babe's hospital course is also disquisitional to make up one's mind readiness for discharge. A history of genetic abnormality or preterm gestation, extracardiac abnormalities, arrhythmias, prolonged dependence on inotropic back up, and the need for extracorporeal membrane oxygenation, take all been associated with adverse outcomes following S1P.^{four , 9 , 10 , 16} Thus, selective inpatient interstage management has been proposed and is a strategy used at some centers for infants considered loftier adventure.¹⁸

Home Equipment

In preparation for discharge caregivers are taught the necessary skills to treat and monitor their baby at home.^{19 , 20} Essential IHM equipment includes a portable pulse oximeter with baby‐appropriate probes and a digital baby scale sensitive to weight changes of ≤x g.²¹ Assistance with obtaining equipment and other dwelling supplies or services tin be provided by a case director. In some regions, the cost of pulse oximeters and scales may be covered by insurance and provided by suppliers of durable medical equipment. Occasionally a alphabetic character of medical necessity stating the high risk of morbidity and mortality is needed. At some centers equipment or tablet‐based devices are purchased using charitable donations or by the institution and loaned to families for the duration of the interstage period. Provision of equipment and resources needed to support IHM may prove challenging and cost prohibitive at any given eye.

Caregiver Education

Caregivers crave training in equipment use, daily measurements, recording (eg, binder with paper logs, dwelling house telemedicine system, cellular phone awarding), and interpreting data (eg, oxygen saturation, heart rate, weight, nutritional intake) based on baby–specific parameters and previous trends.^{x , fourteen , 22 , 23 , 24 , 25} Beginning this education early on in the inpatient stay allows time for caregivers to become competent and confident in their power to perform IHM tasks. They must acquire to accurately calculate daily nutritional intake and weight changes.^{4 , 10 , 12 , 24} Depending on the recording application used, selected programs can electronically calculate these changes, follow trends and provide automatic cherry flag notifications.^{22 , 23 , 24} In improver, medical knowledge of their infant'south status, medication assistants, general babe care, preparation of calorically enhanced formula, feeding assistants (eg, oral, nasogastric, or gastrostomy tube), schedules for follow‐upwards appointments, and IHM team contacts must exist provided in writing (Table ii).^{xiv , 25 , 26}

Tabular array 2. Discharge Preparation and Teaching Checklist^{fourteen , 15 , 27 , 28}

Topic	Content	Resource/Evaluation Method
Individualized cardiac defecta	[ ] Review diagram of cardiac defect, surgical interventions, oxygen saturations, and future surgeries	[ ] Written textile/diagrams [ ] Peer‐reviewed web links for CHD information
IHM equipment and programme of carea	[ ] Explicate IHM program purpose, goals, and participation requirements[ ] Review IHM team members and contact information [ ] Review equipment use (eg, scales, pulse oximeter, oxygen—if needed)[ ] Review clinical data entry organisation (eg, paper or web‐based with technical support)[ ] Red flag listing and action program[ ] Emergency department plan	[ ] Written material and demonstration of equipment employ with teach dorsum[ ] Recording saturation, heart charge per unit, weight change, and intake volume total[ ] Verbalize crimson flags [ ] Store a re-create of the emergency activity plan in IHM binder and/or cellular telephone
General postoperative carea	[ ] Medication list and schedule [ ] Written diet programme [ ] Enteral feeding supplies [ ] Activity/sternal precautions [ ] Incisional care [ ] Infection prevention [ ] Immunization plan (include Synagis) [ ] Infectious endocarditis prophylaxis [ ] Baby CPR training [ ] Full general newborn care (eg, bathing, cord care, temperature, normal evolution, car seat test)	[ ] Written material on content listed and other babe care [ ] Demonstration of preparing correct dosing of medication[ ] Preparation of calorically enhanced breast milk or formula[ ] Demonstrate feeding tube care and pump use [ ] Demonstrate normal babe care and verbalize when to phone call the provider
Scheduled appointmentsa (goal of infant seeing a provider within 72 h of discharge)	[ ] Primary care provider [ ] Pediatric cardiologist [ ] IHM clinic [ ] Other subspecialist (eg, genetics, GI, ENT, general surgery, neurology)[ ] Cardiac neurodevelopmental clinic	[ ] Written textile with contact Information for all providers/clinics phone numbers[ ] IHM contact information on emergency card and stored in IHM binder or cellular phone
Discharge Materialsa	[ ] Caregiver keeps a copy of discharge instructions, medication list, hospital discharge summary in attainable locations such as diaper pocketbook, IHM binder, or cellular telephone	[ ] Written textile (copy of discharge summary)
Support grouping informationa	[ ] Provide local, and national CHD support grouping websites	[ ] Written fabric with downloadable links
Competency in care	[ ] Caregiver rooms in for 24 h (minimum) to demonstrate contained intendance before discharge	[ ] Nursing staff and IHM team determination of safe and competent care

Care demands and other family stressors, may impair or filibuster caregiver learning and perchance filibuster discharge.^{nineteen , 26 , 27 , 29} The healthcare team should allow adequate time for training and monitor for any indications that the caregivers may require boosted back up or retraining. Training >ane caregiver is preferable and allows support and respite for the primary caregiver. Caregivers should repeatedly do these skills earlier discharge and be able to verbalize a stepwise procedure for action should a red flag or concerning symptom exist identified that requires reporting. A "rooming in" period for 24 to 48 hours in the hospital is ofttimes encouraged to assess the caregiver's power to independently perform all aspects of care.¹⁵ This experience allows caregivers to imitate a home environs with the healthcare squad available for support and can ease the transition to habitation. Various institutional‐specific educational forms or tools have been developed to assist families with identifying red flags and infant‐specific parameters and have been translated into multiple languages.^{15 , 27} NPC‐QIC has also adult comprehensive standardized clinical intendance processes, resource, and tools for IHM teaching.^{28 , thirty}

Coordination With Healthcare Providers

Well‐coordinated, comprehensive communication of the hospitalization, surgical palliation, and IHM plan of intendance between all healthcare providers is vital for constructive management of the highly complex, fragile baby in the outpatient setting.^{10 , xiv , 17 , 25 , 30} Edifice a close, multidisciplinary collaboration between the caregivers, the IHM team, and healthcare providers in the medical home is advantageous in facilitating a supportive network for the IHM menses.^{19 , 25} In addition to sharing a written discharge programme of care¹⁷ with all healthcare providers, the NPC‐QIC recommends IHM programs incorporate a predischarge team conference telephone call to communicate and coordinate an effective care transition (Table iii). Call participants should include the caregivers, outpatient master care providers, and local pediatric cardiologists, along with the inpatient healthcare team to allow for review of the plan of intendance and to establish open up communication.^xxx Close communication between the IHM team and local cardiologists and primary care providers can foster timely evaluation and direction of medical concerns.

Table 3. Discharge Communication to Healthcare Providers Checklist^{15 , 28}

Advice Topics	Content
Review diagnosis, interventions or procedures, and postoperative grade	[ ] Provide copy of discharge summary [ ] Review diagnosis, surgical intervention and shunt site, residuum defects or concerns, baseline vital signs, oxygen saturation and weight, and any extracardiac anomalies (eg, genetic syndrome, neurologic problems, heterotaxy, asplenia, and dysphasia)
IHM team and management plan	[ ] Innovate IHM, team members, and 24‐h admission [ ] Identify best contact numbers for pediatrician and IHM team to communicate during the interstage[ ] Discuss what volition be monitored, goal parameters, review "cherry-red flag symptoms" and communication needs across all specialties during the interstage period[ ] Hash out the nutrition and medication program, growth parameter goals, who will provide weekly growth and nutrition evaluation with feeding program advancements[ ] Hash out any social concerns or barriers to access care
Appointments	[ ] Principal cardiologist [ ] Primary care provider [ ] Interstage dispensary [ ] Specialty medical clinics (eg, general surgery, genetics, neurology) [ ] Therapies (physical, speech, and occupational) [ ] Neurodevelopmental clinic follow‐up (referral to local early intervention programs) [ ] Cardiac catheterization date (if known) [ ] Monthly palvizumab (RSV season only) [ ] Whatsoever follow‐up outpatient diagnostic or laboratory tests
Emergency plan	[ ] Identify the closest, equipped emergency section with guidelines on oxygenation and hydration, and urgent contact with IHM team and primary cardiologists
Caregiver/family unit resources and support groups	[ ] Social worker, psychologist/mental health, belch planner, or instance manager contact number[ ] Local and national family support groups
Share documents	[ ] Center specific forms—Medical identification tools, wallet identification cards, blood-red flag action plans, interstage visit engagement summary, or NPC‐QIC templates

Interstage Medical Dwelling house

A collaborative, specialized multidisciplinary team to provide coordinated interstage management has been successfully and widely adopted at multiple centers.^{4 , 10 , 21 , 23 , 31} The IHM squad typically consists of pediatric cardiologists, nurses, avant-garde practise providers, dieticians, occupational and physical therapists, and/or speech‐language pathologists knowledgeable in inpatient and outpatient direction of infants with shunt‐dependent SVHD. The concept for the interstage medical dwelling house is consistent with the US Department of Health and Human Services Healthy People 2010 and 2020 goals and objectives for all children with special medical needs to have access and receive ongoing, comprehensive care.³² Establishing a medical dwelling house can optimize the use of medical resources, aggrandize the competence of involved providers, increment caregiver satisfaction, and improve interstage outcomes.^ten An important aspect of this medical home is neurodevelopmental surveillance through specialized cardiac neurodevelopmental clinics and state‐provided early intervention services for high hazard infants. Medical home surveillance is advocated past national organizations (eg, NPC‐QIC, American Heart Association, American University of Pediatrics, and Cardiac Neurodevelopment Outcome Collaborative) to reduce potential developmental delays associated with chronic built cardiac weather.^{33 , 34}

Caregiver Support: Transition From Infirmary to Home

Thoughtful training tin can make the transition from hospital to home less stressful. Caregivers have shown higher confidence and knowledge later discharge when actively participating in the care of their infant while in the hospital.²⁶ Despite this increased competence, many caregivers still feel anxious with the transition from inpatient to home.³⁵ Stress, anxiety, and depression may increase when barriers to education are present and resources are low. These may include language barriers, depression literacy, cultural barriers, single or teenage caregivers, lack of family or financial support, express access to transportation, or lack of insurance. Socioeconomic factors accept been shown to be associated with early mortality after S1P.³⁶ The IHM team tin lessen these factors through anticipating home needs and validating with caregivers stable trends in the infant's monitored parameters before discharge. An early on postdischarge follow‐upwardly telephone call past the IHM squad and habitation nursing visits tin can provide additional valuable support to caregivers.

The high‐risk nature of the interstage period and rigorous daily care requirements not only affects the caregivers but the entire family unit system, including siblings.^{27 , 37 , 38} Whether a start‐time or experienced caregiver, interstage management is complex and beyond the typical care of an infant without congenital heart disease. Caregivers have expressed feelings of social isolation and relied on close family and friends for support during this flow.¹⁹ Thus, caregiver back up must continue later discharge with 24‐hour access to the IHM squad and the ability to communicate with the IHM team in their main language. Caregivers need support and grooming to become an agile fellow member of the medical team. A parent perspective on interstage domicile monitoring is provided in the supplemental materials available with this commodity. This includes the capability to assess for carmine flags, study breaches to the healthcare team, share any parental business organisation and access the emergency department or chief intendance setting to ensure intendance is provided without filibuster. The transition to home is a pivotal stride in fulfilling the caregiver'southward goal of "becoming a family," which has been reported equally an of import coping strategy during this fourth dimension.^xix

Nutritional Direction

Adventure factors for growth failure during the interstage period include inadequate caloric intake, increased metabolic demands of center failure, gastrointestinal dysfunction, or noncardiac comorbidities. Poor feeding and decreased weight proceeds tin can be signs of hemodynamic instability later S1P and have been associated with more complex postoperative grade at S2P.^{eleven , 39} Regular assessment of caloric intake and weight gain is needed throughout the interstage menstruum to allow early identification of feeding difficulties or inadequate growth. NPC‐QIC efforts identified processes common to centers with positive interstage weight gain and adoption of these strategies is vital during IHM^{28 , 30} (Table 4). Targeted weight gain during the interstage period is xx to thirty g per 24-hour interval and oftentimes requires enteral intake goals of 120 to 140 mL/kg per day and 120 to 150 kcal/kg per day.⁴⁰ Infant formula or expressed chest milk often requires concentration to 22 to 30 calories/oz.^twoscore Feeding routes used subsequently S1P include oral, tube, or a combination of these, including breastfeeding, if the infant's clinical status allows. Each infant's dwelling house nutrition plan should include type and road of enteral support needed to promote growth and neurodevelopment.

Table 4. Nutrition Bundlea

Standard post‐S1P feeding evaluation (eg, clinical, endoscopic, or consume evaluation

Domicile calibration for interstage weight monitoring

Specific weight gain/loss "red flags" to identify patients with growth failure in the interstage

Regular telephone contact with families during the interstage virtually nutrition and growth

Dietitian available for each cardiology outpatient visit during the interstage

Boosted Interstage Surveillance Strategies

Interstage surveillance strategies have evolved over the past decade.^{10 , 29} Eye variations occur based on staff, resource, and admission or distance to a cardiac center. Despite eye differences in surveillance, common strategies include weekly communication with families, interstage specialty clinics, and telehealth modalities.

Weekly advice between caregivers and the IHM squad provides an opportunity to review physiologic and growth trends, update feeding plans, validate caregiver observations, provide anticipatory guidance, and addresses whatever concerns. Algorithms to facilitate direct and frequent communication between the caregiver and IHM care team, referring cardiologist, and pediatrician have been adult by some centers.^{25 , 41 , 42}

Interstage specialty clinics have evolved to meet the multidisciplinary needs of infants after S1P, and care is often provided by cardiology nurse practitioners, cardiologists, dieticians, and social workers. Interstage clinic visits vary depending on distance from center and type of monitoring (eg, telehealth). Clinic visits beget the IHM squad an opportunity to validate weight trends and oxygen saturations using dispensary equipment, review data trends recorded by caregivers, ostend medication dosages, review carmine flags and how to reach IHM squad, observe enteral feeding, perform a comprehensive concrete assessment, obtain diagnostic imaging if warranted, and appraise the emotional and social country of caregivers. Other services that may exist provided include oral communication, occupational, and concrete therapy to appraise and address developmental needs.

Currently, telehealth platforms are being used at some centers for interstage surveillance through phone or tablet‐based applications including some with real‐time image and video transfer capabilities. The proliferation of consumer‐grade mobile devices and secure, cloud‐based services has laid the foundation for automated real‐time analytics and notifications to the healthcare team.^{22 , 43} Programs that integrate IHM with clearly defined, automated thresholds for notification of the healthcare team take demonstrated improvements in survival, weight gain, and shorter interstage intensive intendance unit length of stay.^{22 , 43} These technologies may aid address socioeconomic disparities in interstage survival and potentially alleviate some parental stress.^{22 , 35 , 43} Systematic analysis of daily videos of the babe may provide important insights. Mobile technologies offer an ever‐evolving continuum of IHM and care in the outpatient setting. Withal, consideration of the caregiver's comfort level with digital technology, access to wireless connectivity, and potential preference for traditional IHM strategies should exist best-selling.

Progression to Stage ii Palliation

Timing of elective S2P is variable merely is typically performed betwixt 3 and six months later S1P.^{44 , 45} One of the furnishings of IHM has been a progression to earlier S2P to mitigate adventure in those infants with multiple breaches of red flag criteria or those who fail to progress.⁴⁶ Early S2P may exist more feasible as interstage weight gain has improved in the era of IHM.⁹ Outcomes of S2P, even when washed at an early age, are comparable to S2P washed at standard age.⁴⁷ A decision algorithm for progression to S2P based on clinical markers is shown in Effigy 2.

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Figure ii. Decision Algorithm for Progression to Phase ii Palliation.

IHM indicates interstage home monitoring; S1P, stage ane palliation; and S2P, stage 2 palliation.

Transition ON Completion of Interstage Abode Monitoring

The completion of IHM marks a major care transition for caregivers and unremarkably occurs after the completion of S2P or a cardiac procedure (surgical or catheter‐based) deemed to reduce an babe's hazard of acute decompensation at dwelling. Caregivers accept expressed peachy relief around normalizing family unit routines and the ability to focus on the babe's developmental progress once discharged after S2P.¹⁹ However, others shared feelings of stress, anxiety and a heightened sense of vigilance nigh caring for their infant without the aid of abode monitoring and frequent contact with the healthcare team.^twenty The healthcare squad should be sensitive to caregiver needs and priorities when preparing for IHM completion. Assurance of ongoing back up during the transition of cardiac care from the IHM team to potentially new cardiology providers or location is critical along with reinforcing the caregiver's power to assess their infant without the utilise of monitoring equipment. The completion of IHM should be viewed in a positive light and caregivers should exist praised for reaching the S2P milestone.

Expansion of IHM to Other High‐Take chances Infants With Congenital Heart Disease

Hypoplastic left centre syndrome is considered to be among the highest gamble of early on mortality, fifty-fifty after successful S1P and early IHM programs focused primarily on infants who had undergone S1P.ⁱⁱ More recently, unmarried center reports have identified non‐HLHS single ventricle defects to also be at high adventure for interstage mortality (eg, heterotaxy anatomic substrates, pulmonary atresia with intact ventricular septum, or other defects with shunt‐dependent pulmonary blood flow, and balanced apportionment) supporting the expansion of IHM to all types of SVHD both with and without a systemic‐to‐pulmonary shunt.^{14 , 31 , 48} The potential to include biventricular shunt‐dependent defects that crave an initial palliative procedure could be another area of inclusion. Surgical practices such every bit main transplant for loftier‐risk lesions or neonatal consummate repair of previously palliated Congenital Heart Illness and eye resource may limit this expansion of IHM to additional lesions.

Multicenter Interstage Quality Improvement Efforts

The NPC‐QIC was established in 2008 to better outcomes of HLHS during the interstage catamenia with an emphasis on reducing mortality and improving quality of life.⁴⁹ Initial NPC‐QIC publications reported significant exercise variation with regards to intendance during the interstage menstruation.^{17 , 41 , 50} In a comparing of information from ii eras, there were significant changes in infant‐specific risk factors, surgical strategy, belch communication, and interstage care as measured past belch processes, nutrition support, interstage monitoring, and surgical timing of S2P.⁵¹ The work of this multicenter quality improvement collaborative resulted in improved cognition about best practices to manage interstage infants and led to the development of an Interstage Change Parcel, a resource containing multiple interstage improvement strategies.²⁸ NPC‐QIC's Phase 1 efforts led to a subtract in interstage mortality by >40% (ix.5%–5.5%) and a decrease in growth failure by 28% (18.half-dozen%–13.1%).³⁰

Interstage Home Monitoring Outcomes

Improved Survival

Information from unmarried centers with IHM programs study success in reducing interstage bloodshed to as low as 2%.^{one , 10 , 14 , 25 , 42 , 46 , 52} The NPC‐QIC reported a decrease in interstage mortality by >forty% betwixt 2008 and 2016.³⁰ Although multiple factors likely contributed to the decline, the widespread adoption of IHM strategies at >fifty cardiac centers participating in the collaborative was idea to be the most impactful. Other variations in do and programmatic changes such as earlier catheterization and S2P or hospitalization of high‐take chances infants throughout the interstage period or following a readmission may have also contributed to differences in survival outcomes.³⁰

Decreased Major Event Readmissions

Decreased readmissions for major events such every bit cardiac arrest, shunt thrombosis, arrhythmias, systemic infections, aspiration, stroke, or seizures was a desired outcome of IHM.⁴² In dissimilarity, readmissions prompted by red flags or concerning symptoms were anticipated to increase every bit they were considered important in allowing for prompt assessment and prevention of major events. A recent study plant infants with IHM were more likely to exist admitted than historical controls.⁴² Although the IHM grouping had more than readmissions, the elapsing was shorter compared with controls with the majority beingness observational and requiring minimal or no interventions. Analysis of the NPC‐QIC registry information revealed unanticipated interstage readmissions occurred in 66% of 815 infants at l centers.⁵³ The median readmission length of stay was 2 days. Almost readmissions were prompted past pocket-size clinical changes (eg, blood-red flags). Only half dozen% were major adverse result readmissions. Given the lack of previous data, information technology is difficult to determine whether IHM itself has increased or decreased the frequency and type of readmissions. All the same, it seems likely that early readmissions based on scarlet flag events identified past IHM may prevent major adverse events.⁵³ In support of this scenario, 1 study noted the percentage of IHM infants in their cohort requiring major interventions such as emergent surgery or an unscheduled interventional catheterization, was similar to their previously reported interstage mortality rates indicating these interventions may peradventure stand for "near‐miss deaths."²⁵

Improved Growth

Although it was widely believed the complex medical problems of infants with HLHS would not permit normal weight proceeds, an unexpected merely welcomed outcome of IHM was improved weight gain during the interstage period.^three NPC‐QIC data demonstrated utilise of a nutrition bundle (Table iv) and home monitoring of weight was associated with a 28% reduction in interstage growth failure.^thirty Further analyses revealed that with advisable caloric goals and IHM, adequate growth could be achieved regardless of feeding modality.¹⁸ Others have reported improved interstage weight gain³¹ and normal interstage growth velocity of 26 g/d during the menstruation associated with IHM.⁹ Frequent weight monitoring provides more opportunities for clinicians to detect growth failure early and intervene to optimize the nutritional programme of care. Interstage growth failure has been linked to a more than complex postoperative course and longer hospital length of stay at the time of S2P.^{39 , 49 , 54} Furthermore, early growth failure in complex congenital heart disease is associated with worse early developmental outcomes.^{55 , 56}

Gaps in Knowledge and Goals

The major research gap associated with IHM is the lack of a randomized controlled trial to appraise the function it plays in improvement in interstage bloodshed and morbidity. IHM may be merely one component, peculiarly because IHM employ is concomitant with improved discharge processes, care coordination, and diet bundles, which are all linked to better outcomes.ⁱⁱⁱ Boosted agreement of central drivers of improvement can let resources to be targeted more effectively. It is unlikely a randomized trial will be performed because of the broad acceptance of the benefits of IHM. Rather, further research exploring the use of novel statistical techniques can assist in predicting which infants with a single ventricle are most at risk for sudden death, inform future interstage care, and define who may benefit from remaining inpatient interstage.^{9 , 18} Use of multilanguage, low literacy, affordable telehealth and social media options for monitoring and communicating with families requires further investigation. The ultimate goal would exist to lift the burden of caregiver‐driven information collection and assessments of deterioration onto the care coordination squad.²³ In addition, there is express research examining the psychological effects of IHM on caregivers.^nineteen The interstage menses is often perceived equally a highly stressful and broken-hearted fourth dimension. Future qualitative studies to address the interstage feel may prove useful to accost caregiver and family unit needs and identify ways to meliorate IHM programs.²⁶ With caregiver education, nutritional management and care coordination existence primal elements in IHM, there remain many opportunities for ongoing quality improvement and inquiry. The evolution of national quality improvement collaboratives such as NPC‐QIC, offering excellent forums for determining all-time practices and establishing benchmarks. Through collaboration and transparency across centers, in that location is a continued endeavour to achieve 100% survival in the population of infants with SVHD.

Summary

Infants with shunt‐dependent SVHD pose unique challenges during the interstage period for caregivers and the healthcare team related to potential sudden acute hemodynamic decompensation, hypoxia, feeding difficulties, and somatic growth failure. IHM is an innovative strategy adult to augment conventional outpatient direction and to assist with early detection of physiologic changes associated with morbidity and bloodshed post-obit successful S1P. At that place is overwhelming bear witness of improvement in unmarried ventricle infant survival and growth outcomes with IHM programs. This surveillance strategy has become the standard of care for well-nigh pediatric cardiac programs and continues to evolve using telehealth platforms such as phone technology and tablet‐based real‐fourth dimension video encounters in an effort to optimize data collection and visual assessment of the infant at home. The initial multisite examination of IHM effectiveness past NPC‐QIC has laid the groundwork for determining all-time practices and establishing benchmarks for care. Together with improved care coordination, discharge planning, and nutritional management bundles, IHM is a key component in optimizing outcomes in these high‐risk infants. Future collaborative enquiry and quality improvement efforts should address the psychosocial needs of caregivers to improve the IHM experience and further investigate additional key drivers impacting bloodshed and morbidity in the SVHD population.

Disclosures

Writing Group Disclosures

Writing Group Fellow member	Employment	Enquiry Grant	Other Inquiry Back up	Speakers' Agency/Honoraria	Expert Witness	Ownership Interest	Consultant/Informational Board	Other
Nancy A. Rudd	Children's Hospital of Wisconsin	None	None	None	None	None	None	None
Nancy A. Thruway	University of California, Los Angeles School of Nursing	NIH R01*	None	None	None	None	None	None
Nancy Southward. Ghanayem	Texas Children'south Hospital; Baylor Higher of Medicine	None	None	None	None	None	None	None
Garick D. Colina	Cincinnati Children'southward Hospital Medical Center	None	None	None	None	None	None	None
Linda M. Lambert	University of Utah and Primary Children'south Hospital	None	None	None	None	None	None	None
Kathleen A. Mussatto	Children's Infirmary of Wisconsin Herma Centre Eye	None	None	None	None	None	None	None
Jo Ann Nieves	Nicklaus Children's Hospital	None	None	None	None	None	None	None
Sarah Robinson	Self‐Employed	None	None	None	None	None	None	None
Girish Shirali	Children's Mercy Hospitals and Clinics The Ward Family Eye Center	None	None	None	None	None	None	None
Michelle M. Steltzer	Ann and Robert Lurie Children's Infirmary of Chicago	None	None	None	None	None	None	None
Karen Uzark	Academy of Michigan, Women's Hospital	None	None	None	None	None	None	None

Reviewer Disclosures

Reviewer	Employment	Research Grant	Other Research Support	Speakers' Bureau/Honoraria	Practiced Witness	Buying Involvement	Consultant/Advisory Board	Other
Lori A. Erickson	Children's Mercy Hospitals and Clinics	None	None	None	None	None	None	None
Patricia O'Brien	Children'due south Infirmary, Boston	None	None	None	None	None	None	None
James S. Tweddell	Cincinnati Children'southward Hospital Medical Heart	None	None	None	None	None	None	None
Gail Wright	Stanford University	None	None	None	None	None	None	None

Acknowledgments

The authors would like to acknowledge Dr Nancy Ghanayem for the evolution of Effigy i and Dr Garick Hill for the development of Figure 2. The authors would besides like to acknowledge Ashley Ziedler, MLIS, of the Medical College of Wisconsin for her assistance with the literature review and reference management.

References

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Source: https://www.ahajournals.org/doi/10.1161/JAHA.119.014548

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