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These posters have been presented at meetings in Children's Mercy and around the world. They represent research that was done at the time they were created, and may not represent medical knowledge or practice as it exists at the time viewers access these posters.

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  • Partnering with Inpatient Situation Awareness Screening to Improve Early Sepsis Recognition by Leslie Hueschen, Stephanie Burrus, Andrea Raymond, Charity Thompson, Lisa Carney, and Jay Rilinger

    Partnering with Inpatient Situation Awareness Screening to Improve Early Sepsis Recognition

    Leslie Hueschen, Stephanie Burrus, Andrea Raymond, Charity Thompson, Lisa Carney, and Jay Rilinger

    Background

    Early recognition of sepsis and designing a huddle process are key drivers of the Improving Pediatric Sepsis Outcomes (IPSO) collaborative. Our tertiary care, free-standing, pediatric hospital joined the IPSO collaboration in 2016. Our hospital began piloting Situation Awareness (SA) Escalation Huddles in 2016, to improve recognition of patients with clinical deterioration. The tool triggers if a patient has a high PEWS(> 5), requires initiation of hi-flow nasal cannula, or for staff/parental concern. The SA paper tool guides the communication process and steps of the huddle. Huddles include a nurse, provider, and respiratory therapist. One of the goals of the SA escalation huddle is to decrease the amount of Advanced Life Support code blue events and rapidly identify sepsis patients on the inpatient units. Prior to this study there was no formal screening process for sepsis in the inpatient units.
    Objective

    •Identify septic patients early on inpatient units by forcing consideration of sepsis during SA screening in high-risk patients. •Utilize existing SA screening tool without employing increased work demands on care providers. •Ultimately, improve timely treatment of septic patients (antibiotics, fluid resuscitation) and escalate to higher level of care earlier, if indicated.
    Methods

    In Fall 2017, a question “Sepsis Concern?” was added to the SA tool to better identify septic patients. Roll out of new SA tool was completed in a step-wise process throughout the hospital and completed January 2018 in all units. We collected the number of PICU transfers with + SA tool. We hypothesized this change should lead to timely identification of sepsis, care team huddle with bedside discussion, treatment, and escalation of care. Sepsis clinical practice guidelines and order-sets were developed in conjunction to aid in the decision making process.
    Results
    There were 162 number of severe sepsis patients treated from September 2017 to March 2018 in our hospital. There were an average of 23 severe sepsis patients each month. 21% (34/162) of these patients were identified to have possible sepsis on the inpatient units.

    From September 2017 to March 2018, 1,012 SA tools were triggered with a mean of 4.8 huddles/day. The average patient had an average 2.3 (1,012/445) SA huddles during their hospitalization. Of SA triggers, 49 huddles (over 34 patients) screened positive for “Sepsis Concern?”(4.8%,49/1,012). 71% of “+ Sepsis Concern” episodes were treated as possible severe sepsis (35/49). Of the “+ sepsis concern” patients, 29% (10/34) were transferred to the ICU. When completing the SA form 13.3% (135/1,012) skipped the “Sepsis Concern?” question.

    During the study, 21% of PICU transfers for possible severe sepsis had the SA tool used (3/14) prior to transfer.

    Conclusions

    The majority of sepsis patients identified with the SA tool had severe sepsis and required ICU care. Ideally the “concern for sepsis” question would generate a shared mental model in the diagnosis and treatment of sepsis, however even questioning the possibility of sepsis and discussion about sepsis remains challenging.

  • Peer Accountability Improves Performance for Daily CHG Bathing to Reduce CLABSIs by Sara Crawford, Stacy Pennington, Jeremy Affolter, Kathlyn Baharaeen, Paul N. Bauer, Tara Benton, Shekinah Hensley, Tiffany Mullen, and Michelle Waddell

    Peer Accountability Improves Performance for Daily CHG Bathing to Reduce CLABSIs

    Sara Crawford, Stacy Pennington, Jeremy Affolter, Kathlyn Baharaeen, Paul N. Bauer, Tara Benton, Shekinah Hensley, Tiffany Mullen, and Michelle Waddell

  • Pharmacy Driven Best Possible Admission Medication History at a Pediatric Institution by Damon Pabst, Charity Thompson, Brandon French, Brian O'Neal, Garret Matthews, Zeb Benner, and Joshua Meade

    Pharmacy Driven Best Possible Admission Medication History at a Pediatric Institution

    Damon Pabst, Charity Thompson, Brandon French, Brian O'Neal, Garret Matthews, Zeb Benner, and Joshua Meade

  • Pressure Injury Prevention for Urology Surgical Procedures: A QI Initiative by Azadeh Wickham, Pat Clay, and Kate Gibbs

    Pressure Injury Prevention for Urology Surgical Procedures: A QI Initiative

    Azadeh Wickham, Pat Clay, and Kate Gibbs

  • Problematic Child Mealtime Behavior and Caregiver Mobile Phone Use by Libby Milkovich, Meredith Dreyer, Brooke Sweeney, Sarah Nyp, and Ben Black

    Problematic Child Mealtime Behavior and Caregiver Mobile Phone Use

    Libby Milkovich, Meredith Dreyer, Brooke Sweeney, Sarah Nyp, and Ben Black

    BACKGROUND

    Problematic mealtime behaviors (PMB) (externalizing behavior at mealtime) have been seen anthropologically when adult caregivers are absorbed in their mobile phones. Parents with mobile phone problematic use (MPPU) are more likely to be absorbed in a mobile device. Neither the correlation of MPPU to PMB, nor the frequency of PMB to perceived impairment of problem behavior have been quantitatively studied.

    OBJECTIVE

    Evaluate correlation of caregiver MPPU and child PMB to improve understanding of the possible implications of caregiver MPPU

    METHODS

    Participants included caregivers of children ages 2-8 years being seen in a pediatric hospital clinic. Participants completed a survey on an iPad via REDCAP. The survey included demographics (caregiver/child age, gender, race/ethnicity; child BMI; caregiver level of education), a validated measure for caregiver MPPU (Mobile Phone Problematic Use Scale; MMPUS) and a validated measure for perception of child PMB (Meals in our Household; MIOH). MIOH includes frequency of PMB and perceived impairment from PMB. Measures are continuous variables. Spearman correlation was used for the studied variables and possible confounding variables. Significant confounding variables were evaluated in a regression model.

    RESULTS

    100 caregivers (mean age 32.9 years, 65% white, 20% ≤ high school completion) participated. Correlation of MIOH problematic behavior total with MMPUS was significant (p=.004, r=0.289). MIOH perceived impairment from PMB had stronger correlation with MMPU (p=M (p=.005). No significant caregiver variables noted for PMB. Younger child age was significantly correlated with PMB (p=.007, r=-.274). No significant differences in child variables for MPPU. Significant variables were evaluated in regression model, and MPPU and PMB remained significant.

    CONCLUSION

    Correlation was found between MPPU and PMB. Correlation was stronger when measure of perceived impairment was evaluated. This suggests that caregivers with increased MPPU perceive behavior as more problematic. Understanding the potential relationship between caregiver MPPU and child PMB, strengthens pediatricians’ ability to counsel about the implications of caregiver MPPU when discussing child PMB. Objective coding during mealtimes of caregiver mobile phone use and child mealtime behaviors will further evaluate this relationship.

  • Quality Improvement: Implementing a Foot Exam to Improve Care for Patients with Diabetes Mellitus by Emily Paprocki, Ryan McDonough, Tiffany Musick, and Joseph Cernich

    Quality Improvement: Implementing a Foot Exam to Improve Care for Patients with Diabetes Mellitus

    Emily Paprocki, Ryan McDonough, Tiffany Musick, and Joseph Cernich

  • Redirecting Care, Directing Support: End of Life Huddles in the Intensive Care Nursery by Tiffany Willis and Sandra Ganey

    Redirecting Care, Directing Support: End of Life Huddles in the Intensive Care Nursery

    Tiffany Willis and Sandra Ganey

  • Reducing Discard Blood Draw Volumes from Subcutaneously Implanted Ports (PORT) in Patients with End Stage Renal Disease (ESRD) by Uttam Garg, Tyson Moore, Renita Trujillo, Penny Monachino, Amy Wiebold, Angela Ferguson, Gabor Oroszi, and Vimal Chadha

    Reducing Discard Blood Draw Volumes from Subcutaneously Implanted Ports (PORT) in Patients with End Stage Renal Disease (ESRD)

    Uttam Garg, Tyson Moore, Renita Trujillo, Penny Monachino, Amy Wiebold, Angela Ferguson, Gabor Oroszi, and Vimal Chadha

    Background
    •To monitor clinical status, dialysis and transplant patients with ESRD frequently require blood draws.
    •To preserve their veins and to avoid frequent intravenous access, these patients, especially young children, require PORT placement.
    •The PORT is flushed with saline and filled with heparinized saline to prevent blood clotting between blood draws.
    •To avoid contamination from PORT fluids, a fixed amount of blood is withdrawn and discarded before the blood sample is drawn for laboratory analyses. Currently, the recommended discard blood volume is 5 mL (five times the reservoir volume of most PORTs and attached catheters.)
    •The volume of discarded blood can be significant, particularly in young patients with ESRD who are already anemic and who receive Epogen and iron therapy. This can be a leading cause of iatrogenic anemia.
    •In this study, we evaluated the possibility of reducing the discarded blood volume from 5 mL to 3 mL without compromising laboratory results.
    Objective

    •To determine if a decrease in the discarded volume from 5 mL to 3 mL will still provide accurate and valid lab results for the two most commonly obtained clinical tests, complete blood count (CBC) and basic metabolic profile (BMP). Material and Methods
    •Twelve patients with CKD who had a PORT placed as part of their clinical care were included in the study after obtaining informed consent. •Blood specimens for CBC and BMP were obtained for clinical indications only. •Fifty paired blood specimens were obtained between February and October 2017. •Blood specimens were obtained sequentially: study blood specimen (SmL) was obtained after a discard volume of 3 mL, followed by any additional blood draw equal to [5 - (3 + SmL)], followed by control blood specimen (C). •The chemistry (BMP) samples were analyzed on a Vitros® analyzer and hematology (CBC) samples were analyzed on a Sysmex® analyzer. •The agreement and variability between the results of the study (S) and the control (C) specimens were analyzed by regression analysis (coefficient of determination and line of equality), and Bland Altman analysis. •Variability limits for most analytes were set as one-third of the difference between the reference range for that particular analyte (red lines). •Statistical analysis was performed using MedCalc Statistical Software version 18.2.1, Ostend, Belgium.
    Results
    •The coefficient of determination (R2) for all of the tested analytes was ³0.9 with the exception of bicarbonate (0.75); (p for all Conclusions

    •The study specimen results showed a high degree of correlation (R2) on regression analysis and a slope approximating 1 (x = y) on the line of equality. •There was a very high degree of agreement between control and study specimen results on Bland Altman analysis. Only 6 (1%) of the results were outside the preset clinically acceptable limits. •Our results suggest that for at least CBC and BMP, the discard blood volume can be safely decreased from 5 to 3 mL, a 40% decrease in blood wastage without impacting the validity and accuracy of the results.

  • Reducing Serious Harm Pressure Injuries: Cause Analysis Through Bedside Huddles by Cathy Bandelier Laverick, Brian Haney, Kimberly Palmer, Pat Clay, and Kate Gibbs

    Reducing Serious Harm Pressure Injuries: Cause Analysis Through Bedside Huddles

    Cathy Bandelier Laverick, Brian Haney, Kimberly Palmer, Pat Clay, and Kate Gibbs

  • Resident Great Catches: Recognizing Resident Physicians Who Promote a Safe Environment for Patients by Kristin Streiler and Susamita Kesh

    Resident Great Catches: Recognizing Resident Physicians Who Promote a Safe Environment for Patients

    Kristin Streiler and Susamita Kesh

  • Sawubona from Swaziland! - A Global Health View of the HIV/AIDS Epidemic in Swaziland by Abby Hardin

    Sawubona from Swaziland! - A Global Health View of the HIV/AIDS Epidemic in Swaziland

    Abby Hardin

    Describes the learning experiences of a pediatric resident regarding how to practice evidence based medicine in low resource settings.

  • Scope of Advance Practice Providers' Role in Transition to Adulthood Care by Cathy Cartwright and Teresa Hickam

    Scope of Advance Practice Providers' Role in Transition to Adulthood Care

    Cathy Cartwright and Teresa Hickam

    Advance Practice Providers adopting formal transition planning provided a wider scope of responsibilities supporting transition to adult care than those who did not.

  • Sepsis: Triage Triggers, Outcomes Quicker by Rylee Ainge, Mackenzie Flaws, Natalie Heim, Emily Herndon, Hayley Norris, and Amy Scott

    Sepsis: Triage Triggers, Outcomes Quicker

    Rylee Ainge, Mackenzie Flaws, Natalie Heim, Emily Herndon, Hayley Norris, and Amy Scott

  • Shortening the Duration of Antimicrobial Therapy in Uncomplicated Skin and Soft Tissue Infections by Alicia Daggett and Brandi Missel

    Shortening the Duration of Antimicrobial Therapy in Uncomplicated Skin and Soft Tissue Infections

    Alicia Daggett and Brandi Missel

  • Significant Loss of Blood Amino Acids and Free Carnitine in Newborns Receiving Continuous Renal Replacement Therapy (CRRT) by Uttam Garg, Marita Thompson, Bradley A. Warady, and Vimal Chadha

    Significant Loss of Blood Amino Acids and Free Carnitine in Newborns Receiving Continuous Renal Replacement Therapy (CRRT)

    Uttam Garg, Marita Thompson, Bradley A. Warady, and Vimal Chadha

    Background

    •Newborns with acute kidney injury (AKI) or end-stage kidney disease (ESKD) often receive prolonged CRRT when the early initiation of peritoneal dialysis is either contraindicated or unable to be performed. •These patients often receive total parenteral nutrition (TPN) to meet their nutritional goals. •Little to no information exists on the loss of blood amino acids (AA) and carnitine during CRRT in these patients. •The objective of this study was to determine the amino acids and carnitine losses in newborns receiving prolonged CRRT and TPN. Material and Methods

    •Three newborns who received prolonged (> 2 weeks) CRRT and TPN were included in the study. Blood and CRRT effluent were simultaneously collected from these patients. •The effluent specimens were collected over 8-12 hours and the results were extrapolated to 24 hrs. Plasma was separated from blood for the analysis of 30 amino acids and free carnitine. •Amino acids in plasma and CRRT effluent were analyzed using an amino acid analyzer which uses ion-exchange chromatography and post-column ninhydrin derivatization (Biochrom System). Free carnitine was determined by HPLC-tandem mass spectrometry (HPLC-MS/MS) using flow injection, electrospray ionization and precursor ion scan. •The total amount of amino acids and carnitine received by each patient was calculated from the amino acids concentrate and carnitine added to the TPN solution. •The sieving coefficients (SQ) for each measured amino acid and carnitine was determined, while the amino acids and carnitine losses were calculated as mg/day, and as a percentage of the intake. Results •The blood flow was 50 mL/min for all three cases, and the CVVHDF clearance ranged from 68 – 115 mL/kg/hr (1.4 – 3.2 L/hr/1.73 m2). •The AA intake varied from 3.8 – 4.5 gm/kg/day. Carnitine intake was 20 mg/kg/day in two patients and 50 mg/kg/day in the third. •The SQ for all essential AAs was >0.8; in contrast, acidic AAs (glutamic and aspartic acid) had a SQ 0.84 and carnitine losses were 80% of the daily intake. •At the given high protein intake, all three patients achieved a positive N2 balance ranging from 0.45 to 0.59 gm/day.
    Conclusions

    •During CRRT, most of the AAs (including all essential AAs) are freely filtered and the quantity lost is influenced by the CRRT clearance. •In our very small sample of patients, positive nitrogen balance was achieved in all three patients with a very high (3.8 – 4.5 gm/kg/day) protein intake. •As carnitine is rapidly and freely filtered during CRRT, these patients are at risk of significant carnitine depletion. •The impact of serum AA and carnitine losses on nutritional outcome in patients with renal disease receiving CRRT is not known at this time. •Additional studies are needed to determine if these patients require special AA formulations and the degree of carnitine supplementation in their TPN to account for the AA and carnitine losses that regularly occur.

  • Sustainability and Outcomes of a Standardized Aminoglycoside Induced Ototoxicity Monitoring Algorithm by Claire Elson, Christopher M. Oermann, Michelle Weltman, and Ellen Meier

    Sustainability and Outcomes of a Standardized Aminoglycoside Induced Ototoxicity Monitoring Algorithm

    Claire Elson, Christopher M. Oermann, Michelle Weltman, and Ellen Meier

  • Teaching High School Seniors about Transitioning to Adult Healthcare by Christine Clune, Teresa Hickam, and Adrienne Olney

    Teaching High School Seniors about Transitioning to Adult Healthcare

    Christine Clune, Teresa Hickam, and Adrienne Olney

    This poster describes an educational intervention consisting of two classroom sessions to teach high school seniors how to successfully transition to adult care. Topics covered included the ability to fill out medical forms, when to contact one's doctor and where to get medical care when the doctor's office is closed, how health care privacy changes at age 18, the need for health insurance, the need to keep medical records, etc.

  • The Headache Champion Program by Courtney Wellman and Kristin Allender

    The Headache Champion Program

    Courtney Wellman and Kristin Allender

    BACKGROUND

    Approximately 10% of school age children suffer from migraines, making migraines one of the top five health problems experienced by youth today

    School nurses often are the first healthcare provider seen by youth with migraine; visits to the school nurse for headaches amounted to one-third of the enrolled student population in a large local school district. (see reference)

    Empowering school nurses through education and resources to identify and manage migraines therefore may have significant benefits to children with migraines and their families.

    OBJECTIVE

    To improve migraine care in the community through establishing a headache specialist mentorship program for select school nurses (the "Headache Champion Program")

    PROJECT OVERVIEW

    Figure 1 provides an overview of the project model

    Applications were accepted from interested, self-nominated school nurses within the region served by the headache specialist clinical program; those selected for the program demonstrated a commitment to learning and a passion for improving the lives of headache sufferers

    The selected school nurses were matched with a headache specialist "mentor" for monthly telephone conversations aimed at increasing knowledge and empowering advocacy for youth with headaches; the headache specialist also provided additional resources for school and home use (e.g., www.headachereliefguide.com)

    Nurses received a certificate of completion and a letter they could mail to families in the school district making them aware of the nurse's participation

    RESULTS & CONCLUSIONS

    Upon completion of the program, school nurse "Headache Champions" were empowered by knowledge to better care for school age children who suffer from migraines.

    Feedback from school nurse participants was positive (e.g., "Being able to talk to a person is so much better than just receiving information. . . so educational")

    Interest in the program has triipled since its roll out and continues in 2017-18 school year

    Future efforts include an urgent access headache clinic, to which students may be directed, and continued growth of the mentorship program.

  • The Lifecycle of a K-card: Improving Data Collection While Improving Bundle Reliability by Tara Benton, Barb Haney, Lacey Bergerhofer, Susan Burns, Yolanda Ballam, and Kaitlyn Hoch

    The Lifecycle of a K-card: Improving Data Collection While Improving Bundle Reliability

    Tara Benton, Barb Haney, Lacey Bergerhofer, Susan Burns, Yolanda Ballam, and Kaitlyn Hoch

  • The Relationship Between Iron Status, Limb Movements, and Sleep Architecture in Children by David G. Ingram MD, Gaylyn Perry MD, Zarmina Ehsan MD, and Baha Al-Shawwa MD

    The Relationship Between Iron Status, Limb Movements, and Sleep Architecture in Children

    David G. Ingram MD, Gaylyn Perry MD, Zarmina Ehsan MD, and Baha Al-Shawwa MD

    Background

    •Iron status is an important aspect of the evaluation of children with excessive limb movements during sleep. •While there is clear data in adults to support this relationship, the data in children is less well established. •We evaluated the association between iron status and limb movements during sleep in a large pediatric sample. Methods •This is a retrospective analysis of a single institution sleep program looking at all patients who underwent overnight polysomnogram and ferritin test within 24 hours of doing the sleep study between January 2015 and October 2017. •Those with sleep apnea (Central Apnea Index >5/hr or Obstructive Apnea Hypopnea Index >2/hr) were excluded. Results •There were a total of 418 patients who qualified for inclusion. Mean age was 5.6 years (range 0–19 years). •Overall, higher ferritin level was significantly associated with increasing age, increasing N2 sleep, lower REM sleep and lower single limb movement index but did not correlate with periodic limb movements of sleep. •It appears that ferritin level at 30 nanograms per milliliter is the cutoff to make a difference in improving single limb movements (7.2+/-2.7 vs 7.9 +/- 3.6 for above and below 30 ng/ml, respectively). •In multivariate regression modelling including single limb movement index and age, the association between ferritin and limb movements was no longer significant. Conclusions •Overall, there is a weak correlation between ferritin and single limb movements during sleep. •However, it appears that age is an important possible confounding factor in the complex relationship between and iron status and limb movements in children.

  • The Relationship Between Vitamin D Status, Limb Movements, and Sleep Architecture in Children by David G. Ingram MD, Gaylyn Perry MD, Zarmina Ehsan MD, and Baha Al-Shawwa MD

    The Relationship Between Vitamin D Status, Limb Movements, and Sleep Architecture in Children

    David G. Ingram MD, Gaylyn Perry MD, Zarmina Ehsan MD, and Baha Al-Shawwa MD

    Background

    •Vitamin D deficiency has recently been posited as an important factor in the pathogenesis of restless leg syndrome.

    •We evaluated the association between vitamin D deficiency and limb movements and sleep architecture in a pediatric sample.

    Methods

    •This is a retrospective analysis of a single institution sleep program looking at all patients who underwent overnight polysomnogram and 25-OH vitamin D within 60 days of doing the sleep study between January 2015 and October 2017. •Those with sleep apnea (Central Apnea Index >5/hr or Obstructive Apnea Hypopnea Index >2/ hr) were excluded. Results •There were a total of 83 children who qualified for inclusion. Mean age was 7.0 years (range 1–17 years). •Overall, higher Vitamin D level was significantly associated with increasing N3 sleep (r=0.267, p=0.015), but was not significantly associated with other sleep parameters including limb movements. •In multivariate regression modelling including Vitamin D and age, the association between vitamin D and N3 sleep percentage remained significant (B=0.212, SE=0.102, p=0.04). Conclusions •Overall, there is a weak positive correlation between vitamin D and N3 sleep, even independent of age. •In contrast, there was no association between any limb movement parameter and Vitamin D status. •Further investigation is needed to better define the role of Vitamin D in sleep physiology.

  • Utilizing a Situation Awareness Huddle Tool to Decrease Code Blue Events by Matthew B. Johnson, Lisa Carney, Cheryl Powers, Bradley Bishop, Natalie Masters, Becky Paulsen, Andrea Raymond, and Paul N. Bauer

    Utilizing a Situation Awareness Huddle Tool to Decrease Code Blue Events

    Matthew B. Johnson, Lisa Carney, Cheryl Powers, Bradley Bishop, Natalie Masters, Becky Paulsen, Andrea Raymond, and Paul N. Bauer

  • Venous Thromboembolism Risk Stratification via Electronic Medical Record Classification by Shannon L. Carpenter, Laura Miller-Smith, Brittney Hunter, Ashley Duty, Justin Sheets, Yuri Tupa, and Kate Gibbs

    Venous Thromboembolism Risk Stratification via Electronic Medical Record Classification

    Shannon L. Carpenter, Laura Miller-Smith, Brittney Hunter, Ashley Duty, Justin Sheets, Yuri Tupa, and Kate Gibbs

  • Implementation of a Multi-Institution, Multistate Cystic Fibrosis Transition Program by Christopher M. Oermann, D Polineni, A Andrews, A Moog, Paula Capel, T Bomstedt, Ellen Meier, and J Mermis

    Implementation of a Multi-Institution, Multistate Cystic Fibrosis Transition Program

    Christopher M. Oermann, D Polineni, A Andrews, A Moog, Paula Capel, T Bomstedt, Ellen Meier, and J Mermis

    Background: Children’s Mercy-Kansas City (CMKC) is an independent children’s hospital in Kansas City, MO. Its CF Care Center (CFCC) provides care for 250 patients. The University of Kansas Medical Center (KUMC) is an academic medical center in Kansas City, KS. Its CFCC includes adult/pediatric programs (230/50 patients). Interactions between CMKC and KUMC were minimal prior to 2013. CMKC provided care through adulthood despite CF Foundation mandates requiring transition of patients aged 18-21 years. Transition only occurred per patient request. Methods: The CMKC CFCC underwent restructuring and staff expansion in 2013-2014. KUMC underwent staff expansion in 2012, adding a nurse, respiratory therapist (RT), social worker (SWO, and dietitian. These changes fostered improved communications and provided a foundation for developing a more robust transition program (TP). Elements of the TP included SW to SW driven initiation of quarterly meetings (none occurred prior to 2013), chaperoned tours of KUMC ambulatory and inpatient care areas, creation of a “Welcome Packet” by KUMC, and expanded inclusion of KUMC at the CMKC CF Family Education Day. In 2013, KUMC staff were invited to participate in breakout sessions and Q&A sessions with parents to help address concerns related to the RP and care at KUMC. KUMC also created co-clinic coordinator positions in 2013 with the SW and RT. This streamlined the TP by assigning education to the SW and logistics (medical records and scheduling to the RT. The KUMC and CMKC teams worked together to create a TP Worksheet and Checklist to endure that needed records were available. KUMC also developed a peer-to-peer program from transitioning and pre-transition patients to connect with adults already receiving care at KUMC. Results: The number of patients transitioned each year varied. The largest number of patients transitioned in a given year followed changed discussed above. The age range at transition narrowed between 2010 and 2016, with all patients transitioning by age 21 in 2015. Mean age at transition decreased. Conclusions: The unique situation at CMKC and KUMC resulted in impediments to a functional TP. Barriers included payer issues related to MO and KS Medicaid, a culture of “patient-driven” transition and insufficient staffing at both institutions. Reorganization of the CMKC CFCC and improved staffing at both institutions led to an improved TP, with transition of all adult patients from CMKC to adult CF programs. Communication and sustaining a “Culture of transition” are key elements in the development of a successful TP.

  • Knowledge Base of Adolescents with Congenital Heart Disease by Mark Gelatt, Julie Martin, Jennifer A. Marshall, Jennifer Panuco, Jenea Schmidt, and Pamela Finn

    Knowledge Base of Adolescents with Congenital Heart Disease

    Mark Gelatt, Julie Martin, Jennifer A. Marshall, Jennifer Panuco, Jenea Schmidt, and Pamela Finn

    Introduction:

    Most congenital heart disease [CHD] is diagnosed and treated in early childhood with parents responsible for decision-making. The adolescent assumes this role in preparation for transition to an adult congenital heart program. We studied the knowledge base of our adolescent CHD patients and their parents.

    Methods:

    Established CHD patients, >11 y.o. and their parents, were independently surveyed in the outpatient clinic. Participation was voluntary. Cardiomyopathy, electrophysiology and transplant patients were excluded. Scores were assessed as full, partial or incomplete.

    Results:

    Most (98% parents; 83% adolescents) reported that their cardiologist had provided education. Adolescents provided a full (49%) and partial (15%) medical name and full (32%) and partial (35%) description of their condition. Older adolescents performed better (p<0.005). Parents scored better, regardless of patient age (p<0.005). Presence of prior surgery/intervention made no difference. Patients undergoing last surgery >11 y.o. scored better than those with surgery only when younger or without surgery (p<0.05) [data not shown]. Patients with mild unrepaired or surgically repaired shunt lesions (ASD, VSD, PDA), and their parents, were much less able to name their lesion than those with left heart lesions (aortic stenosis, coarctation, mitral valve disease), tetralogy of Fallot, TGA/TAPVR or palliated single ventricles, but similar in ability to at least partially describe the defect (p<0.005). In this more affected population, the ability to fully name the defect (81/134; 60%) far exceeded the ability to fully describe it (37/134; 28%; p<0.005).

    Conclusion:

    Only one-half of adolescents are able to name their cardiac defect, and one-third are able to adequately describe the anatomy. Older adolescents, those with a more recent history of surgery and those with more complex defects perform better. Parents are much more knowledgeable than their children. A strong emphasis should be made on educating adolescents with CHD as they transition to adulthood.

 

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