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[.]
Trang 1fusion 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
dialy-sis, 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
facili-tate 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
decision-making 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
dial-ysis modality in addition to formulating the
ini-tial 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
vaccina-tions 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
advo-cate for or alert the transplant selection team to
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 multidisci-plinary team This should incorporate a collabo-ration 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 physio-logical 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 edu-cational level does not always correlate with how health literate a caregiver is [24] Care should be tailored accordingly, and the APP is in an excel-lent position to help develop or improve existing materials to not only ensure they are designed to promote health literacy, but also are individual-ized 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 champi-ons from both the pediatric and adult sides facili-tate a smoother transition for the adolescent/ young-adult [25], and this is an excellent role for the APP in dialysis
The Role of the APP in Improving Patient Outcomes
Assessing and improving the quality of care pro-vided to patients with end-stage renal disease is
an important responsibility for the entire dialysis
6 Role of the Advanced Practice Provider in a Pediatric Dialysis Program
Trang 2team, 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
interdisci-plinary team to review the current practice and
decide on interventions to be implemented After
each intervention, results are tracked and
dis-cussed 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
litera-ture 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
satisfac-tion and percepsatisfac-tions 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]
Conclusion
Care of the pediatric patient with ESKD is
multi-faceted and requires management from an
inter-disciplinary team of which advanced practice
providers have proven themselves to be a vital
member The APP is often considered the front-
line healthcare provider, offering continuity of
care and follow-up of complex medical issues
Nephrology practices that include APPs as part
of their ESKD healthcare team often appreciate
improved outcomes and satisfaction from
patients, other dialysis team members, and
care-givers secondary to the experiences and
leader-ship that he or she provides The APP can thrive
in an environment that is supportive of his or her
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
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2 Primack WA, et al The US pediatric nephrol-ogy workforce: a report commissioned by the American Academy of Pediatrics Am J Kidney Dis 2015;66(1):33–9.
3 Dellabella, H 50 years of the nurse practitioner profession 2015 [1/3/19]; Available from: https:// www.clinicaladvisor.com/web-exclusives/50-years-of-the-nurse-practitioner-profession/ article/453044/
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Frequently_Asked_Questions_4.3_FINAL.pdf
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19 Chand DH, et al Dialysis in children and adolescents:
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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
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infec-tions and peritonitis in pediatric patients
receiv-ing peritoneal dialysis: 2012 update Perit Dial Int
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22 Swartz SJ, et al Exit site and tunnel infections in
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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 chil-dren with mild to moderate chronic kidney disease Pediatrics 2010;125(2):e349–57.
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26 Taylor DM, et al Limited health literacy in advanced kidney disease Kidney Int 2016;90(3):685–95.
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6 Role of the Advanced Practice Provider in a Pediatric Dialysis Program
Trang 4© Springer Nature Switzerland AG 2021
B A Warady et al (eds.), Pediatric Dialysis, https://doi.org/10.1007/978-3-030-66861-7_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
health-care 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
Clinical Practice Guidelines and Clinical Performance Measures
Quality metrics in chronic kidney disease (CKD) programs are driven by clinical practice guide-lines (CPG) and clinical performance measures (CPM) “Clinical practice guidelines are state-ments that include recommendations intended to optimize patient care that are informed by a sys-tematic 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 sci-entific literature and an assessment of the likely benefits and harms of a particular treatment This information enables healthcare providers to pro-ceed 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 evalu-ation [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
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
7
Trang 5established, 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 do not develop guidelines, they
evalu-ate, form recommendations, encourage
devel-opment, 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
recom-mendations have been established in most
guide-lines (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-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 associ-ated acute therapies It is not uncommon for pedi-atric nephrology practitioners to care for dialysis patients in both outpatient and acute settings This can be challenging for a pediatric dialysis pro-gram 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 out-comes “The pediatric ESRD patient is a mem-ber of a unique subpopulation of ESRD patients The cause of ESRD in the pediatric patient differs markedly from the adult patient; treatment modal-ities in the pediatric ESRD patient differ substan-tially 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 distinguish-ing differences of child healthcare, often referred
to as the “four Ds” [8 9]:
Developmental Status Change
Children pass through developmental stages quickly, and measurement approaches must be appropriate to each stage.
Differential Epidemiology
Children have fewer chronic physical ailments than adults, making it harder to reliably measure performance related to the care of chronic conditions among children.
Dependence Children depend on adults for
access to healthcare.
Demographic Patterns
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 devel-opment of a quality-based program for
pedi-Table 7.1 Dialysis clinical practice guidelines
Acute kidney injury
(AKI)
Acute kidney injury (AKI)
Bone metabolism Blood pressure in CKD
Cardiovascular disease CKD evaluation and
management Chronic kidney
disease, classification
CKD-mineral and bone disorder (CKD-MBD) a
diabetes and CKD Diabetes Glomerulonephritis (GN)
Glomerulonephritis Hepatitis C in CKD
Hemodialysis
adequacy Lipids in CKD
Hepatitis C Living kidney donor
Nutrition in CKD Transplant candidate
Peritoneal dialysis
adequacy
Transplant recipient Transplant
Vascular access
H Currier et al.
Trang 6atric populations The CHA added a fifth “D:
Detecting Differences” to address the challenges
healthcare measures encounter, trying to
differ-entiate among levels of quality [10]
Oversight of Centers for Medicaid
and Medicare (CMS) and State
Regulations
In the USA, the Centers for Medicare & Medicaid
Services (CMS) regulate end-stage renal
dis-ease (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
facili-ties, 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
con-tinuous 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
com-mittee must also, at a minimum, include a
physi-cian (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
differ-ences from adult healthcare; therefore, the
pedi-atric 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-nator, pediatric dietitian, child life specialist,
school liaison, transplant coordinator, pharma-cist, business manager, and/or quality manager These individuals should also be reflected on the QAPI interdisciplinary team (IDT) For inte-grated pediatric and adult care facilities, team members may have cross- functional responsibili-ties 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 geo-graphic 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 coor-dinated delivery of ESRD services, representa-tives of hospitals and health facilities serving dialysis and transplant patients in each area of the country (USA) are linked with patients, phy-sicians, 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 profes-sionals, providers, and patients and create a col-laborative environment to improve patient care”
7 Quality Improvement Strategies and Outcomes in Pediatric Dialysis