Clinical Care Pathways Supporting the Care of Children and Young People With Congenital Heart Disease





Introduction


Nursing professionals use data and information about their patients’ care journeys to support decision making and the development of evidence-based practice. Care pathways provide a structured care approach using an evidence-based framework. In her work during the Crimean War (1854), Florence Nightingale (1820–1910) demonstrated a commitment to robust data collection to improve patients’ care experiences. Data and evidence-based practice are key drivers toward the improved safety, quality, and outcomes of patient care ( Fig. 84.1 ).




Fig. 84.1


Safety, quality, and efficiency are key drivers of improved patient care.


Florence Nightingale improved the provision of care and nursing standards by using structured data collection to improve standards of care, and she systematically documented the improvements in her patients. She demonstrated:




  • Passion about the use of evidence in practice



  • Clarity about quality measurement and the tracking of performance



  • Insistence on high-quality standards



  • Devotion to the best interests of her patients





Defining a Care Pathway


A care pathway provides a structured tool or framework that uses data from a wide range of patient journeys combined with the best available evidence-based practice to manage the standardization of the care process and drive quality improvement. This is usually achieved with an integrated audit process.


The European Association of Care Pathways defines a care pathway as “a complex intervention for the mutual decision making and organization of care processes for a well-defined group of patients during a well-defined period.”


Defining characteristics of care pathways include:




  • A statement of the goals and key elements of care based on evidence, best practice, patients’ expectations, and their characteristics



  • Facilitation of communication among team members as well as patients and families



  • Coordination of the care process by aligning the roles and sequencing the activities of the multidisciplinary care team, patients, and their families



  • Documentation, monitoring, and evaluation of variances and outcomes



  • Identification of the appropriate resources necessary to implement the care pathway



The aim of a care pathway is to enhance the quality of care across the continuum by improving risk-adjusted patient outcomes, promoting patient safety, increasing patient satisfaction, and optimizing the use of resources.




Development and Implementation


Effective implementation of care pathways is known to reduce variability in care, define clinical practice, and improve outcomes. The aim is to support and develop an organized care pathway for the child or young person with a specific disease process based on the best evidence-based practice and, where evidence is limited, to develop the care pathway based on clinical review of experience, medical notes, and the specialist knowledge of a clinical team. Challenges exist when there is a small patient group or limited clinical experience; however, these situations provide a positive structured opportunity to collate and develop an agreed knowledge base as part of a well-structured plan-do-study-act cycle of improvement.


Care pathways are used by the wider multidisciplinary team for a specific group of patients where different phases of the patient journey are defined by the professionals involved in the patients’ care that is optimized and sequenced by a time frame―for example, by hour, day, or clinical consultation ( Table 84.1 ). The final structure and time frame will depend on the area or defined time period for the pathway’s use, from critical inpatient to long-term outpatient care ( Fig. 84.2 ). The structure of the care pathway should support an internal audit of the care process as well as outcome measures integrated into tool development.



Table 84.1

Examples of Cardiac Areas of Care Using Integrated Care Pathways





































Area/Time Line Care Pathway Examples Comments
Cardiac intensive care unit (CICU)


  • Extracorporeal membrane oxygenation (ECMO), neonatal respiratory care, pediatric respiratory care, cardiac support



  • Ventricular assist support, bridge to heart transplantation



  • Glenn surgery



  • Tetralogy of Fallot



  • Fast-track congenital heart disease surgery



  • Thoracic surgery

The structured way of care delivery within a CICU lends itself to the development of a care pathway and a framework of care.
High dependency


  • Glenn surgery



  • Tetralogy of Fallot



  • Fast-track congenital heart disease surgery



  • Palliative/supportive care pathway

Many care pathways bridge areas of care, CICU, high dependency, and the ward environment, moving the patient toward a safe, high-quality, and effective discharge in partnership with the family and clinical care team.
Cardiology


  • Glenn surgery



  • Tetralogy of Fallot



  • Fast-track congenital heart disease surgery



  • Heart transplantation assessment



  • Thoracic surgery

Fast-track congenital heart disease cases are selected at a multiprofessional case-review presurgical meeting. This involves a broad multiprofessional team and a wide range of care pathways from surgery through follow-up.
Cardiac day unit


  • Heart transplantation assessment



  • Nurse-led discharge cardiac day cases



  • Cardiac catheters



  • MRI investigations



  • Preassessment for surgery or interventional treatment or diagnostics

Allows nurses to lead care and discharge, empowers the patient and families to participate in same-day discharge.
Diagnosis-based


  • Tetralogy of Fallot



  • Glenn surgery



  • Fast-track congenital heart disease surgery



  • Patent ductus arteriosus (PDA) closure

The PDA pathway involves services both internal and external to the hospital.



  • Transition pathway of young people to adult heart services



  • Virtual wards: individual assessment and monitoring home program

Starting at 12 years of age and defined by a time frame between surgical interventions
Presurgery


  • Tetralogy of Fallot

Cyanotic episodes
Community based

MRI , Magnetic resonance imaging.



Fig. 84.2


Care pathways bridge the gap in knowledge and skills between congenital heart disease (CHD) specialist care and generalist pediatric care at home.


It is recommended that the multidisciplinary team that will be involved in the care pathway design be part of the development and implementation committee as well as champions of the proposed pathway. It is critical that key stakeholders are involved in the early stages of development of a care pathway. The care pathway requires a multidisciplinary team working on its development as well as a willingness by the team to standardize care, empower joint decision making, and bring information across clinical teams together into one document. This produces shared goals, ensures that there is a structured escalation plan, encourages communication regarding the pathway’s impact, and prompts the clinical team to investigate the reasons behind deviations in care. The deviations then become part of future outcomes, data review, and improvements/modifications of the care pathway in an iterative fashion.


Care pathways are considered to be among the best tools for promoting high-quality health care and the standardization of care processes; it has been shown that the implementation of care pathways reduces the variability in clinical practice and improve outcomes. Within the health provision services there are ongoing challenges to ensuring that clinical staff are adequately trained to deliver the best care and, going forward, retaining such staff. For clinical staff to use a care pathway, relevant training must be provided, especially for new and junior clinical staff, to sustain a core level of expertise and knowledge that is up to date. Deneckere et al., using a cluster randomized controlled trial of over 5000 clinical staff, demonstrated that care pathways can improve multidisciplinary teamwork, organize care, and reduce the risk of burnout of staff in the acute care setting. A care pathway allows clinical staff with less specialist knowledge to be engaged with the care pathway of a patient group and provides a structured way for care to be delivered. It also engages the patient and family with the care they will receive.


However, care pathways have also been suggested to have negative effects, such as stifling innovation. This may be more likely to occur in environments where there are barriers to change in care delivery and where care pathways are not utilized within a culture where the safety, quality, and effectiveness of the clinical care of the patient is a priority.




Development and Implementation


Effective implementation of care pathways is known to reduce variability in care, define clinical practice, and improve outcomes. The aim is to support and develop an organized care pathway for the child or young person with a specific disease process based on the best evidence-based practice and, where evidence is limited, to develop the care pathway based on clinical review of experience, medical notes, and the specialist knowledge of a clinical team. Challenges exist when there is a small patient group or limited clinical experience; however, these situations provide a positive structured opportunity to collate and develop an agreed knowledge base as part of a well-structured plan-do-study-act cycle of improvement.


Care pathways are used by the wider multidisciplinary team for a specific group of patients where different phases of the patient journey are defined by the professionals involved in the patients’ care that is optimized and sequenced by a time frame―for example, by hour, day, or clinical consultation ( Table 84.1 ). The final structure and time frame will depend on the area or defined time period for the pathway’s use, from critical inpatient to long-term outpatient care ( Fig. 84.2 ). The structure of the care pathway should support an internal audit of the care process as well as outcome measures integrated into tool development.



Table 84.1

Examples of Cardiac Areas of Care Using Integrated Care Pathways





































Area/Time Line Care Pathway Examples Comments
Cardiac intensive care unit (CICU)


  • Extracorporeal membrane oxygenation (ECMO), neonatal respiratory care, pediatric respiratory care, cardiac support



  • Ventricular assist support, bridge to heart transplantation



  • Glenn surgery



  • Tetralogy of Fallot



  • Fast-track congenital heart disease surgery



  • Thoracic surgery

The structured way of care delivery within a CICU lends itself to the development of a care pathway and a framework of care.
High dependency


  • Glenn surgery



  • Tetralogy of Fallot



  • Fast-track congenital heart disease surgery



  • Palliative/supportive care pathway

Many care pathways bridge areas of care, CICU, high dependency, and the ward environment, moving the patient toward a safe, high-quality, and effective discharge in partnership with the family and clinical care team.
Cardiology


  • Glenn surgery



  • Tetralogy of Fallot



  • Fast-track congenital heart disease surgery



  • Heart transplantation assessment



  • Thoracic surgery

Fast-track congenital heart disease cases are selected at a multiprofessional case-review presurgical meeting. This involves a broad multiprofessional team and a wide range of care pathways from surgery through follow-up.
Cardiac day unit


  • Heart transplantation assessment



  • Nurse-led discharge cardiac day cases



  • Cardiac catheters



  • MRI investigations



  • Preassessment for surgery or interventional treatment or diagnostics

Allows nurses to lead care and discharge, empowers the patient and families to participate in same-day discharge.
Diagnosis-based


  • Tetralogy of Fallot



  • Glenn surgery



  • Fast-track congenital heart disease surgery



  • Patent ductus arteriosus (PDA) closure

The PDA pathway involves services both internal and external to the hospital.



  • Transition pathway of young people to adult heart services



  • Virtual wards: individual assessment and monitoring home program

Starting at 12 years of age and defined by a time frame between surgical interventions
Presurgery


  • Tetralogy of Fallot

Cyanotic episodes
Community based

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Jan 19, 2020 | Posted by in CARDIOLOGY | Comments Off on Clinical Care Pathways Supporting the Care of Children and Young People With Congenital Heart Disease
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