NPCNA 2015 Summer Newsletter

Transcription

1 NPCNA 2015 Summer Newsletter

2 Join us for our upcoming conference!

3 Our Mission To promote the health and welfare of those children with heart disease and their families by enhancing the art and science of pediatric cardiovascular nursing.

4 Our Goals To promote delivery of care in accordance with standards of nursing care of the child with heart disease. To promote education of pediatric cardiovascular nurses in accordance with standards for education and practice. To provide educational opportunities for the nurses caring for children with heart disease To facilitate and maintain effective communication among pediatric cardiovascular nurses. To encourage scientific investigation and research in all areas of pediatric cardiovascular nursing.

5 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital Margaret L. Schroeder, RN, PPCNP-BC Thirty years ago, single ventricle cardiac defects such as Hypoplastic Left Heart Syndrome were uniformly fatal. With surgical innovations and improvements in postoperative hospital management, survival following the first stage neonatal repair exceeds 80%. Despite this, these infants remain vulnerable to even mild changes in their physiologic state following Stage 1 palliation and historically, interstage mortality reached 10-15%. These infants require a second stage repair at 4-6 months of age and a final stage Fontan procedure between 2 and 3 years of age. Based on the hypothesis that some physiologic variables such as decreased arterial saturation or poor weight gain may foretell the presence of serious anatomic lesions or inter-current illness and that early detection would allow for life-saving intervention, a home surveillance program was developed ten years ago and was shown to reduce interstage mortality. Ghanayem, NS, Hoffman, GM, Mussatto, KA, et al (2003). Home Surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg 2003;126:

6 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) Background In November of 2009 a Home Monitoring Program (HMP) was fully implemented at Boston Children's Hospital. The HMP follows single ventricle infants (including all shunted patients) upon discharge from the hospital after their Stage I surgery until they return for their Stage II surgery or otherwise graduate out of the program. Prior to implementation of the HMP, mortality rate for patients discharged home during the interstage period was 12% at our institution. Families are provided a pulse oximeter and infant scale to monitor oxygen saturations and weight gain on a daily basis at home. They record this information as well as feeding trends in a logbook. Prior to discharge, families receive comprehensive education on the equipment and monitoring plan from the inpatient nurse practitioner. Breaches or red flag events (decreased saturations, weight loss, inter-current illness) are reported to the cardiology team. All care providers, including the pediatrician and VNA, are provided with information about the program and responses to breaches. The nurse practitioner and dietitian contact families weekly to assess progress and discuss parental concerns. The weekly contact between the nurse practitioner and family varies in time, from a 5 minute phone call when things are going well to a whole hour when a red flag is identified and requires further action. Calls to the non-english speaking family necessitate an interpreter which significantly increases the time it takes to complete the call. Some patients have gone onto biventricular repair. Other patients have had their BTS coiled. And some patients have transitioned to the transplant service.

7 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) National Collaborative In addition to implementation of a HMP, Boston Children s Hospital was a founding member of the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC), a national group of more than 56 pediatric cardiac centers whose aim is to improve survival and quality of life among infants who are discharged home during the interstage period. NPCQIC follows infants who have had Stage I Norwood surgery with a BT shunt or Stage I Norwood surgery with a Sano. Our Home Monitoring Program follows these patients as well as infants with single ventricle physiology who have had a BTS alone, hybrid procedure, or PAB but not necessarily arch work. Together NPCQIC and HMP are focused on reducing mortality and improving outcomes in these vulnerable infants and providing support to parents. Furthermore, home monitoring is now considered a "standard of care" among centers who participate in NPCQIC.

8 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) Nurse Practitioner Leadership and Management HMP is a nurse practitioner driven program. In 2009, we started with 10 nurse practitioners. Today there are 21 participating NPs, including 1 lead coordinator position which was created in The twenty-one supporting nurse practitioners represent all facets of the cardiology program at Boston Children s: 4 work in the outpatient clinic, one works in the cardiac ICU, 14 work on the inpatient cardiac floor (these are a combination of cardiac surgical and cardiac medical NPs), and 2 NPs are actually from outside hospitals. Each NP follows 1-3 patients at a time throughout the patient s interstage period. When the infant is on the floor after their Stage I surgery, the inpatient surgical NP conducts extensive teaching with the family, updates the home pediatrician, and helps coordinate equipment for home.

9 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) Goals of the Home Monitoring Program include Improve survival and reduce morbidity of infants with single ventricle physiology (including shunt-dependent pulmonary blood flow, PA band, hybrid, or balanced single ventricle) between discharge after Stage I Norwood and admission for Bidirectional Glenn or other repair (e.g. coiling of BTS and biventricular repair). Optimize growth in this patient population. Improve our understanding of risk factors for mortality and resource use among this vulnerable population. Collaborate with parents, referring cardiologists, pediatricians and VNA to facilitate complete and inclusive care for the infant

10 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) Patient Outcomes As of May this year, we have enrolled a total of 196 patients in the Home Monitoring Program, 14 of which are currently in their interstage period at home status post their Stage I surgery. The 196 patients include 99 infants with HLHS (51%), 83 infants with other single ventricle anatomy (42%) and 14 infants with other high risk anatomy (7%). Interstage mortality is currently 4%--an 8 point drop since the initiation of the Home Monitoring Program! Location of interstage deaths is distributed essentially evenly across home, inpatient, and ED settings. More than half of our patients have had at least one hospital admission. This data is particularly helpful when we are preparing families to go home and letting them know what to expect during the interstage period. Over half of the flags noted during the interstage period are GI in nature. This includes decrease PO intake, weight loss for two days, not gaining weight for 3 days or more and not meeting the weight gain goal of averaging grams per day.

11 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) Outcomes: Significant Events Interstage Deaths 8 (4%) At Home 3 In Hospital 3 In ED 2 Number of Patients with no Re-admissions 66 (40%) Number of Re-admissions 169 Number of Unplanned Catheterization/OR Visits 43 Outcomes: Growth and Feeding Number of Patients who gained >20g per day on average 117 (70%) Number of Patients with tube feedings (NG, GT, GJ, JT) feedings 53 (32%) Flags Total Flags 611 O2 Saturation 84 (14%) GI Issues 330 (54%) Intercurrent Illness 104 (17%) Other Breach 93 (15%) [1] Except for mortality outcomes, data does not include patients enrolled in 2015 (n=13). These data also do not reflect patients who were followed by a modified home monitoring program or who returned to their home country during the interstage period (n=13). [2] Multiple patients experienced >1 re-admission. [3] Some patients underwent more than one catheterization/or during the interstage period

12 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) Programmatic Growth past and future Since implementation of the program, several tools have been developed to facilitate care of these patients, a number of which have grown out of our involvement in NPCQIC (e.g. the roadmap to home, the ED card, and the establishment of a designated dietitian for this patient population). A call template for the nurse practitioner has helped streamline and encourage standardization during the weekly phone call. Another template to communicate weekly NP contact with the family has improved documentation between encounters. In 2011, in collaboration with one of the lead HMP nurse practitioners, floor nurses created a roadmap to be used by the family and bedside nurse to expedite the discharge process. In 2012, a dietitian was identified to specifically follow HMP patients and optimize growth and weight gain. In 2013, an ED card was developed for families of infants with HLHS to present in the case of a trip to the Emergency Room. In 2014, the HMP teaching and log-book were revised with input from families, bedside RNs, cardiologists, and nurse practitioners Finally, a web-based App is in development that would offer a technologic alternative to the log-book. Families will be able to log oxygen saturations, weights, and feeding trends on-line. The nurse practitioner will then be able to access this information, address flags and follow trends more easily.

13 Single Ventricle Home Monitoring Program In Review Boston Children s Hospital (continued) Summary Since introduction of the Home Monitoring Program in 2009, great strides have been made to improve the survival of infants with single ventricle physiology. Moving forward, there will be many opportunities to broaden our understanding of risk factors for mortality and to improve resource use among these patients: Initiation of a web-based Home Monitoring App to optimize advanced technology in improving management and communication with families Ongoing examination of growth and feeding issues specific to the interstage period; in particular, attempting to optimize growth and nutrition support for the 32% of the patients that are not meeting the weight gain goal of 20-30grams per day. Construction of a HMP framework that is visible both within and beyond the hospital and that elicits collaboration and communication with families and the health care team at home (home cardiologist, pediatrician, VNA) Exploration of Home Monitoring principles in other high-risk populations, e.g. heart failure, transplant, VAD, biventricular, pulmonary vein stenosis Infants with single ventricle physiology are a complex and high risk subgroup of patients with congenital heart disease. As a nurse-practitioner led endeavor, the Home Monitoring Program provides essential care for a very fragile group of infants and their families.

14 Meet our Board of Directors

15 Katie Penny, MSN, RN, CWOCN, CPNP Katie Penny, MSN, RN, CWOCN, CPNP is currently working as a cardiac medical nurse practitioner at Boston Children s Hospital on a cardiac acute care unit. She started as a new graduate nurse in 2003 transitioned to higher level staff nurse then clinical nurse specialist with a wound care specialty, and ultimately nurse practitioner. She has presented at multiple conferences both locally and internationally. She has been a member of NPCNA for 10 years. She has submitted to the newsletter, presented at the conferences and helped plan them. She has been on the planning committee for several years and is currently the president of NPCNA.

16 Janelle Nobrega MSN, RN, CPNP Janelle Nobrega MSN, RN, CPNP has been a member of NPCNA since 2010, taking over the role of Secretary in She is currently a Clinical Nurse Specialist (with her best friend Nicole!) on the inpatient cardiology unit at Boston Children s Hospital. On a daily basis, she strives to encourage every nurse to expand their practice and fully embrace the art and science of nursing. Her clinical interests include complex patient and family education, infection prevention and control, mechanical circulatory support, and skin/wound management. Her future goal for NPCNA is to improve member networking and collaboration in order to advance pediatric cardiovascular nursing.

17 Nicole Rybacki, MSN, RN, PCNS-BC Nicole Rybacki, MSN, RN, PCNS-BC has been a member of NPCNA since 2013 and has been a part of the Planning Committee since She has worked at Boston Children s Hospital on the Cardiac Acute Care Unit (8 East) since 2006 where she advanced from student nurse to Staff Nurse Level II. In 2014 she transitioned into the role of Clinical Nurse Specialist. As 8 East CNS, she focuses on complex care patients, infection prevention and control, wound/skin care, and patient/family education. She is an active member of the BCH Cardiovascular Program community and acts as a pediatric cardiac clinical expert and unit/hospital resource.

18 Stephanie Altavilla RN, MSMI, HACP Stephanie Altavilla RN, MSMI, HACP is currently working as the Senior Project Director for the new clinical building which includes the Heart Center at Boston Children s Hospital. She has been an RN for 13 years and started as a staff nurse on the cardiac step down unit and has progressed through positions in regulatory compliance and Informatics, most recently as the Manager of the Clinical Informatics team. She speaks locally and across the country on topics such as medication safety with barcoding and other nursing informatics subjects. She has been a member of NPCNA for 12 years and has been the Treasurer since 2009.

19 Alexandra Johnston, BSN, RN, CCRN Alexandra Johnston, BSN, RN, CCRN graduated with her BSN from Case Western Reserve University in After graduation, she started working in the Cardiac Intensive Care Unit at the Children's Hospital of Pittsburgh of UPMC. Recently she took on a new role as the Clinician/Assistant Nurse Manager for the CICU. She became a member of NPCNA in 2011, and this past year was elected as one of the Program Committee Co-Chairs.

20 Shareen Milligan, DNP, MSN, RN, Shareen Milligan, DNP, MSN, RN, CCRN is currently on faculty at the University of Pittsburgh School of Nursing. She worked at the Children s Hospital of Pittsburgh as a Clinical Education Specialist prior to her faculty appointment. She has been a member of NPCNA since 2009 and currently serves as one of our program chairs. CCRN

21 Melissa B. Jones, MSN, APRN, CPNP-AC Melissa B. Jones, MSN, APRN, CPNP- AC is a nurse practitioner and VAD coordinator in the Cardiac Intensive Care Unit at Children s National Health System in Washington, DC. Melissa has served many leadership roles, has been an invited speaker to national critical care conferences and has presented several poster abstracts at national meetings. As the lead editor for the Pediatric Cardiac Intensive Care Handbook, she has successfully overseen an international collaboration of over 25 pediatric cardiac programs. Melissa has been actively involved in the Northeast Pediatric Cardiology Nurses Association (NPCNA) since She currently serves as the Hospital Liaison Co-Chair.

22 Justine Mize Fortkiewicz, MSN, RN, CCRN, CPN Justine Mize Fortkiewicz, MSN, RN, CCRN, CPN is currently a Professional Practice Specialist in the Cardiac Intensive Care Unit at Children s National Health System. She oversees continuing education for the nurses in her unit as well as facilitates video reviews post critical events. She also is a clinical instructor for Catholic University for their pediatric nursing rotation. Justine currently serves as the newsletter editor for NPCNA and has been a member since 2007.

23 Lisa McCabe has enjoyed a vibrant career in pediatric cardiology, spanning nearly 30 years. Lisa worked in the CICU at Boston Children s Hospital for 23 years as a staff nurse, 14 years of which as an Education Coordinator in the unit. After transitioning to the Inpatient Cardiac Unit, Lisa accepted a position as a Clinical Nurse Specialist. During her time in Boston, she was actively involved in NPCNA, serving for many years as Secretary, Program Chair, President, and now Past President of the organization. Lisa is currently the Clinical Nurse Specialist in the Heart Center at Lucile Packard Children s Hospital at Stanford. Her passions continue to include nursing development, quality improvement, and palliative care. Lisa McCabe

24 Our 2014 Scholarship Recipient Jenna Heichel, MSN, CRNP, CPNP-AC was our 2014 scholarship recipient. Jenna is currently a staff nurse in the CICU at Children s National Health System. Jenna graduated from the University of Maryland s Acute Care Pediatric Nurse Practitioner program in May Jenna is going to start work as a NP in the CICU at Children s National at the end of August. Jenna worked full time while obtaining her degree and is a leader in the unit. She was able to use the scholarship money towards her tuition. We wish her the best in her transition to NP and a continued successful career. NPCNA offers the Educational Scholarship in the amount of $1000 annually in the fall. There is also a research scholarship available. Applications are accepted in the fall after the annual conference. Please see our website for more information.

25 Please visit our Website to register for the upcoming conference and for more information on NPCNA at If you are interested in contributing to the newsletter please Justine Fortkiewicz at