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77 fusion for not only the teams involved, but also the patient and caregiver who may not understand which team is refilling meds, reviewing labs, or whom to call if new issues arise Transferring care[.]
6 Role of the Advanced Practice Provider in a Pediatric Dialysis Program fusion for not only the teams involved, but also the patient and caregiver who may not understand which team is refilling meds, reviewing labs, or whom to call if new issues arise Transferring care from the CKD team to the ESKD team should ideally be well defined with roles and timelines mutually agreed upon between the teams; the APP is in an ideal position to facilitate this communication effectively A meeting to discuss treatment options for ESKD including hemodialysis, peritoneal dialysis, and kidney transplant is required not only from a regulatory perspective, but also to allow the family to make an informed decision This could also serve as an introduction for the patient and family to the ESKD team and facilitate the transfer of care from CKD to ESKD. The APP can lead a multi-disciplinary team to develop a structured health-literate presentation regarding treatment options for ESKD. This approach also facilitates the shared decisionmaking process that is proving to be vitally important for patient outcomes [31] The APP must also work closely with the dialysis staff to coordinate access placement for the chosen dialysis modality in addition to formulating the initial dialysis prescription Dialysis to Transplant Kidney transplant is widely recognized as the treatment with the best outcomes for the patient with ESKD [32] As mentioned previously, APRNs and PAs may wear many different hats depending on the needs of their program The role of liaison between the dialysis and transplant teams is crucial to help facilitate readiness for transplant This may include ensuring vaccinations and required workup such as imaging are ordered and completed, as well as alerting the transplant team of severe illness or situations which would require a patient to become inactive on the wait list In many programs the APP is the consistent provider for the dialysis patient and proves to be a vital member of the team to advocate for or alert the transplant selection team to 77 situations that would indicate a patient is not ready to be placed on the waitlist Pediatric to Adult Care The transition to adult care requires advanced planning and preparation from the multidisciplinary team This should incorporate a collaboration between the healthcare team along with the patient and caregiver to teach self-care Helping the adolescent/young adult (AYA) gain autonomy and responsibility for her or his own care is necessary prior to transitioning to adult care, but this can be a stressful time for the patient and caregiver, creating feelings of anxiety and depression The recommended age to begin the transition process is 12–14 years of age; however, many factors play a role in education readiness including emotional, psychological, and physiological maturity As previously stated, the decline in GFR may affect the ability of the patient to achieve adequate health literacy The caregiver’s level of health literacy should also be taken into account, recognizing that educational level does not always correlate with how health literate a caregiver is [24] Care should be tailored accordingly, and the APP is in an excellent position to help develop or improve existing materials to not only ensure they are designed to promote health literacy, but also are individualized for each patient The AYA is at greatest risk for non-adherence/attendance at clinic visits and preventable hospitalizations in the first 3–4 years after transition to adult care Transition champions from both the pediatric and adult sides facilitate a smoother transition for the adolescent/ young-adult [25], and this is an excellent role for the APP in dialysis he Role of the APP in Improving T Patient Outcomes Assessing and improving the quality of care provided to patients with end-stage renal disease is an important responsibility for the entire dialysis J J Geer and K F Mallett 78 team, including the APP. As part of quality improvement, evidence-based processes of care are monitored and evaluated A systematic approach for improvement is implemented and results are discussed routinely [33] APPs are often involved in quality improvement projects in the dialysis unit Since outcomes are tracked on a monthly basis, problems can be easily identified For example, if a unit is not meeting their goal for anemia management, the APP can collaborate with the medical director, nursing leadership, pharmacist, and other members of the interdisciplinary team to review the current practice and decide on interventions to be implemented After each intervention, results are tracked and discussed on a regular basis In addition to quality improvement projects, the APP can impact the overall quality of care delivered There are few studies in the adult literature examining the role of the APP in the dialysis unit and the impact on quality of care In one study, a joint model of care delivery utilizing an advanced practice nurse with a nephrologist was compared to a nephrologist alone Team satisfaction and perceptions of care delivery were higher in the advanced practice nurse/nephrologist model In addition, more frequent adjustments to dry weights, labs, and medications were made, leading to a conclusion that this model may be more efficient for the chronic dialysis patient [34] learning needs, with structured orientation that allows for customization and flexibility APPs are capable of not only working with physicians and staff to provide the best evidence-based care, but are also capable of leading QI projects that will improve practices and standards of care at their institution as well as nationally References Althouse LA, Stockman JA 3rd Pediatric workforce: a look at pediatric nephrology data from the American Board of Pediatrics J Pediatr 2006;148(5):575–6 Primack WA, et al The US pediatric nephrology workforce: a report commissioned by the American Academy of Pediatrics Am J Kidney Dis 2015;66(1):33–9 Dellabella, H 50 years of the nurse practitioner profession 2015 [1/3/19]; Available from: https:// www.clinicaladvisor.com/web-exclusives/50y e a r s - o f - t h e - n u r s e - p r a c t i t i o n e r- p r o f e s s i o n / article/453044/ American Association of Nurse Practitioners NP facts 2018 August 20, 2018 [1/3/19]; Available from: https://storage.aanp.org/www/documents/research/ npfacts.pdf Pediatric nursing certification board CPNP-PC vs PPCNP-BC: Make an Informed Choice With This Chart 2019 Available from: https://www.pncb.org/ compare-pnp-certification American academy of nurse practitioners certification board Certifications 2019; Available from: https:// www.aanpcert.org/certifications American Nurses Credentialing Center Our Certifications 2019; Available from: https://www nursingworld.org/our-certifications/ National Task Force on Quality Nurse Practitioner Conclusion Education Criteria for Evaluation of Nurse Practitioner Programs 2012 [cited 4th ed]; Available from: https://www.aacnnursing.org/Portals/42/ Care of the pediatric patient with ESKD is multiCCNE/PDF/evalcriteria2012.pdf faceted and requires management from an inter 9 American Association of Colleges of Nursing The disciplinary team of which advanced practice essentials of doctoral education for advanced nursing providers have proven themselves to be a vital practice 2006; Available from: https://www.aacnnursing.org/Portals/42/Publications/DNPEssentials.pdf member The APP is often considered the front- line healthcare provider, offering continuity of 10 American Association of Nurse Practitioners Scope of practice for nurse practitioners 2015 [1/3/19]; care and follow-up of complex medical issues Available from: https://storage.aanp.org/www/docuNephrology practices that include APPs as part ments/advocacy/position-papers/scopeofpractice.pdf 11 Advisory Board A guide to understanding state of their ESKD healthcare team often appreciate restrictions on NP practice 2019; Available improved outcomes and satisfaction from from: https://www.advisory.com/research/medpatients, other dialysis team members, and careical-group-strategy-council/resources/2013/ givers secondary to the experiences and leaderunderstanding-state-restrictions-on-np-practice 12 Institute of Medicine Committee on the Robert ship that he or she provides The APP can thrive Wood Johnson Foundation Initiative on the Future in an environment that is supportive of his or her 6 Role of the Advanced Practice Provider in a Pediatric Dialysis Program of Nursing, a.t.I.o.M., in The Future of Nursing: Leading Change, Advancing Health 2011, National Academies Press (US) Copyright 2011 by the National Academy of Sciences All rights reserved.: Washington (DC) 13 National Council of State Boards of Nursing APRN Consensus Model 2019 [10/15/18]; Available from: https://www.ncsbn.org/aprn-consensus.htm 14 American Nephrology Nurses Association Position Statement: Advanced Practice in Nephrology Nursing 1997 2017 [1/3/19]; Available from: https:// www.annanurse.org/download/reference/health/position/advancedPractice.pdf 15 Physician Assistant History Society, PA Timeline 2017 16 American Academy of PAs What is a PA? 2019; Available from: https://www.aapa.org/what-is-a-pa/ 17 American Academy of PAs What is a PA? Frequently asked questions 2018 [cited 2018]; Available from: https://www.aapa.org/wp-content/uploads/2018/06/ Frequently_Asked_Questions_4.3_FINAL.pdf 18 American Academy of PAs Frequenty Asked Questions: Optimal Team Practice 2018 [1/3/19]; Available from: https://www.aapa.org/wp-content/ uploads/2018/01/Core-FAQ.pdf 19 Chand DH, et al Dialysis in children and adolescents: the pediatric nephrology perspective Am J Kidney Dis 2017;69(2):278–86 20 Chua AN, Warady BA. Care of the pediatric patient on chronic dialysis Adv Chronic Kidney Dis 2017;24(6):388–97 21 Warady BA, et al Consensus guidelines for the prevention and treatment of catheter-related infections and peritonitis in pediatric patients receiving peritoneal dialysis: 2012 update Perit Dial Int 2012;32(Suppl 2):S32–86 22 Swartz SJ, et al Exit site and tunnel infections in children on chronic peritoneal dialysis: findings from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) Collaborative Pediatr Nephrol 2018;33(6):1029–35 79 23 Centers for Medicare & Medicaid Services, Clarification of payment for ESRD-related services under the monthly capitation payment, Department of Health & Human Services, Editor 2011 24 Gerson AC, et al Health-related quality of life of children with mild to moderate chronic kidney disease Pediatrics 2010;125(2):e349–57 25 Tong A, et al Experiences and perspectives of adolescents and young adults with advanced CKD. Am J Kidney Dis 2013;61(3):375–84 26 Taylor DM, et al Limited health literacy in advanced kidney disease Kidney Int 2016;90(3):685–95 27 Keim-Malpass J, Letzkus LC, Kennedy C. Parent/ caregiver health literacy among children with special health care needs: a systematic review of the literature BMC Pediatr 2015;15:92 28 Taylor DM, et al A systematic review of the prevalence and associations of limited health literacy in CKD. Clin J Am Soc Nephrol 2017;12(7):1070–84 29 Cheng TL, Dreyer BP, Jenkins RR. Introduction: child health disparities and health literacy Pediatrics 2009;124(Suppl 3):S161–2 30 Rak EC, et al Caregiver word reading literacy and health outcomes among children treated in a pediatric nephrology practice Clin Kidney J 2016;9(3):510–5 31 Gutman T, et al Child and parental perspectives on communication and decision making in pediatric CKD: a focus group study Am J Kidney Dis 2018;72(4):547–59 32 Hebert SA, et al Special considerations in pediatric kidney transplantation Adv Chronic Kidney Dis 2017;24(6):398–404 33 McClellan WM, Goldman RS. Continuous quality improvement in dialysis units: basic tools Adv Ren Replace Ther 2001;8(2):95–103 34 Harwood L, et al The advanced practice nurse- nephrologist care model: effect on patient outcomes and hemodialysis unit team satisfaction Hemodial Int 2004;8(3):273–82 7 Quality Improvement Strategies and Outcomes in Pediatric Dialysis Helen Currier, Pamela S. Heise, and Leyat Tal Introduction In 1999, when the Institute of Medicine (IOM) report from the USA revealed the high incidence of preventable medical errors, it shook not only the healthcare system but also the public’s faith in the system [1, 2] More recently, preventable medical errors are considered the third-leading cause of death in the USA [3] The IOM defines high-quality care as care that is safe, effective, efficient, equitable, timely, and patient-centered [1] Establishing a culture of transparency and safety allows for all members of the healthcare system to speak up if there is an area that is not meeting the quality standards Once an area of improvement is identified and there is an acknowledgment of a gap between knowledge and clinical practice, only then can we deliver better quality of care to our patients H Currier (*) Department of Medical Affairs, Medical Science Liaison, Rockwell Medical, Wixom, MI, USA P S Heise Renal & Pheresis Services, Assistant Director of Clinical Practice, Texas Children’s Hospital, Houston, TX, USA e-mail: psheise@texaschildrens.org L Tal Department of Pediatrics, Renal Section, Texas Children’s Hospital, Baylor College of Medicine, Houston, TX, USA e-mail: lxtal@texaschildrens.org linical Practice Guidelines C and Clinical Performance Measures Quality metrics in chronic kidney disease (CKD) programs are driven by clinical practice guidelines (CPG) and clinical performance measures (CPM) “Clinical practice guidelines are statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options Rather than dictating a one-size-fits-all approach to patient care, clinical practice guidelines offer an evaluation of the quality of the relevant scientific literature and an assessment of the likely benefits and harms of a particular treatment This information enables healthcare providers to proceed accordingly, selecting the best care for a unique patient based on his or her preferences” [4] CPMs provide a method to measure quality quantitatively through data collection and evaluation [5] There are two well-established CPGs in dialysis: the Kidney Disease Outcomes Quality Initiative (KDOQI), which provides guidelines and commentaries produced by the National Kidney Foundation and published in the American Journal of Kidney Diseases (AJKD), and the Kidney Disease: Improving Global Outcomes (KDIGO), which is a self-managed charity incorporated in Belgium In 1960, the International Society of Nephrology (ISN) Clinical Practice Guidelines Committee was © Springer Nature Switzerland AG 2021 B A Warady et al (eds.), Pediatric Dialysis, https://doi.org/10.1007/978-3-030-66861-7_7 81 H Currier et al 82 established, to oversee the increasing number of guidelines being issued The ISN is a nonprofit organization “dedicated to advancing worldwide kidney health [6].” ISN Practice Committee members not develop guidelines, they evaluate, form recommendations, encourage development, and endorse guidelines; however, they support dissemination of KDIGO guidelines through the ISN journal, Kidney International, and contribute to the KDIGO advisory board [6] Although the dialysis CPGs are widely based on adult research and evidence, pediatric recommendations have been established in most guidelines (Table 7.1) For example, KDOQI updated its guidelines to include a CPG for Nutrition in Children with chronic kidney disease (CKD), which addresses the nutritional needs of infants, children, and adolescents with CKD stages 2–5, end-stage kidney disease (ESKD) on dialysis, or a kidney transplant [7] Outpatient chronic dialysis in the USA has moved from a fee-for-service to a pay-per- performance (also known as “value-based purchasing”) system These systems provide incentives that are tied to improved outcomes, so the need to provide and measure quality of care is critical in this industry Although acute dialy- Table 7.1 Dialysis clinical practice guidelines KDOQI Acute kidney injury (AKI) Anemia Bone metabolism Cardiovascular disease Chronic kidney disease, classification Diabetes Glomerulonephritis Hemodialysis adequacy Hepatitis C Nutrition in CKD Peritoneal dialysis adequacy Transplant Vascular access KDIGO Acute kidney injury (AKI) Anemia in CKD Blood pressure in CKD CKD evaluation and management CKD-mineral and bone disorder (CKD-MBD)a diabetes and CKD Glomerulonephritis (GN) Hepatitis C in CKD Lipids in CKD Living kidney donor Transplant candidate Transplant recipient sis programs are currently not held to the same requirements, establishing measurable quality metrics is necessary to improving care across the spectrum of acute kidney injury (AKI) and associated acute therapies It is not uncommon for pediatric nephrology practitioners to care for dialysis patients in both outpatient and acute settings This can be challenging for a pediatric dialysis program with limited resources Oftentimes, metrics for measuring and reporting meaningful care have been adopted from the adult dialysis population without being validated for pediatric-specific outcomes “The pediatric ESRD patient is a member of a unique subpopulation of ESRD patients The cause of ESRD in the pediatric patient differs markedly from the adult patient; treatment modalities in the pediatric ESRD patient differ substantially from the adult patient; and outcomes such as growth, development, and school attendance are also unique to the pediatric ESRD patient” [7] According to the Agency for Healthcare Research and Quality (AHRQ), there are four distinguishing differences of child healthcare, often referred to as the “four Ds” [8, 9]: Developmental Status Change Differential Epidemiology Dependence Demographic Patterns Children pass through developmental stages quickly, and measurement approaches must be appropriate to each stage Children have fewer chronic physical ailments than adults, making it harder to reliably measure performance related to the care of chronic conditions among children Children depend on adults for access to healthcare Children are the most diverse section of our society (13), and many live in poverty and single-family homes The Children’s Hospital Association (CHA) recognizes the need for identifying pediatric- specific measures In March 2019, they released “Demonstrating Value in Pediatrics: A Measure Menu, Workbook and Guidance for Value-based Care, Payment and Reporting Programs.” It is a resource to guide practitioners in the development of a quality-based program for pedi- 7 Quality Improvement Strategies and Outcomes in Pediatric Dialysis atric populations The CHA added a fifth “D: Detecting Differences” to address the challenges healthcare measures encounter, trying to differentiate among levels of quality [10] versight of Centers for Medicaid O and Medicare (CMS) and State Regulations In the USA, the Centers for Medicare & Medicaid Services (CMS) regulate end-stage renal disease (ESRD) facilities All ESRD facilities must adhere to the Conditions for Coverage (CfC) for ESRD facilities These CfCs establish minimum standards that dialysis facilities must meet to be certified The rule (or law) focuses on the patients and the results of care provided to the patients, establishes performance expectations for facilities, encourages patients to participate in their plan of care and treatment, and preserves strong process measures when necessary to promote meaningful patient safety, well-being, and continuous quality improvement (QI) [11] The CfCs for ESRD facilities outline minimum health and safety standard requirements Quality Assessment and Performance Improvement Program The updated 2008 CfC for ESRD mandates that all dialysis facilities be required to “develop, implement, maintain, and evaluate as effective, a data-driven, interdisciplinary Quality Assessment and Performance Improvement (QAPI) program [11].” Led by the medical director, the QAPI committee must also, at a minimum, include a physician (may be the medical director), a registered nurse, a masters-prepared social worker, and a registered dietitian According to the “five Ds,” children’s healthcare has distinguishing differences from adult healthcare; therefore, the pediatric care team includes other disciplines such as advanced practice provider (i.e., pediatric nurse practitioner (PNP)), creative arts therapist(s) (i.e., music therapist), quality of life program coordi- 83 nator, pediatric dietitian, child life specialist, school liaison, transplant coordinator, pharmacist, business manager, and/or quality manager These individuals should also be reflected on the QAPI interdisciplinary team (IDT) For integrated pediatric and adult care facilities, team members may have cross-functional responsibilities between pediatrics and adults The goal of a chronic dialysis QAPI program is to develop methods to “measure, analyze and track quality indicators or other aspects of performance that the facility adopts that reflect processes of care and facility operations These performance components must influence or relate to the desired outcomes or be the outcome themselves” [12] Expected outcomes based on standards (e.g., Association for the Advancement of Medical Instrumentation (AAMI) for water quality and KDOQI for clinical outcomes) and CMS CPMs for the QAPI can be found in the CfC (effective October 14, 2008) V626 494.110 Condition: Quality Assessment and Performance Improvement and are summarized in the Measures Assessment Tool (MAT) Networks In 1978, the US Congress expanded the ESRD program to include the ESRD Network Program with the goal for quality oversight Regulation requires this program to organize all Medicare- approved ESRD facilities into designated geographic areas referred to as Networks The ESRD Network Organizations acts as the administrative governing body to the Network and liaison to the federal government To help achieve coordinated delivery of ESRD services, representatives of hospitals and health facilities serving dialysis and transplant patients in each area of the country (USA) are linked with patients, physicians, nurses, social workers, dietitians, and technicians into Network Councils There are 18 Network Organizations across the USA and territories (CMS) CMS expects the Networks to “develop a relationship with the dialysis professionals, providers, and patients and create a collaborative environment to improve patient care” ... frequent adjustments to dry weights, labs, and medications were made, leading to a conclusion that this model may be more efficient for the chronic dialysis patient [34] learning needs, with structured... npfacts.pdf Pediatric nursing certification board CPNP-PC vs PPCNP-BC: Make an Informed Choice With This Chart 2019 Available from: https://www.pncb.org/ compare-pnp-certification American academy... public’s faith in the system [1, 2] More recently, preventable medical errors are considered the third-leading cause of death in the USA [3] The IOM defines high-quality care as care that is safe,