By the end of 2015, the prevalence of end-stage renal disease (ESRD) in children and adolescents aged 0–21 years was 99.5 per million population.1 The prevalence of ESRD in children and adolescents 21 years and younger (approximately 10,000 cases) is small compared with the prevalence of ESRD in adults 22 years and older (approximately 650,000 cases). The etiology, morbidity, and mortality among children and adolescents with ESRD, however, differ from the adult population.1 Consequently, the management of children and adolescents with ESRD, especially those undergoing hemodialysis (HD) and peritoneal dialysis (PD), requires specialized training.
In the United States, less than 0.1% of dialysis centers have a pediatric designation, which means the healthcare providers in these centers have received specialized training in the medical management of pediatric patients who require dialysis. Most of the pediatric designated dialysis centers are located near or within a hospital with specialized pediatric services.2 It is not unusual for some families of children and adolescents with ESRD to live a distance from a pediatric dialysis center or a hospital with specialized pediatric services. When children who require specialized pediatric services experience medical emergencies, they are often transported to the nearest emergency room (ER) where specialized pediatric services and subspecialty pediatric providers are likely limited or nonexistent. This gap in specialty services puts children with ESRD at risk for poor patient outcomes.
Location of the ERs, and the healthcare providers' knowledge and experience treating children with ESRD who live a distance from a children's hospital or a hospital with specialized pediatric services are critical. Lack of specialized training and knowledge of pediatric patients with ESRD may result in adverse events or harm in the ER setting. Adverse events are defined as “unintended harms resulting from the care and services provided to the patient.”4 Children are a vulnerable population in an emergency department, particularly in ERs that primarily provide treatment for adults. The risk for adverse events in the ER is particularly high for children with a chronic illness.5 Findings from a systematic review of adverse events occurring in the ER revealed that a higher proportion of adverse events among children who received treatment in the ER occurred in community hospitals as opposed to teaching hospitals. The most common adverse events in the ER were related to medical management, patient diagnosis, and medication administration. Findings also revealed that a significant proportion of these ER-related adverse events were likely preventable.4
A contributing factor for ER-related adverse events is the parents'/caregivers', or child's inability to provide a detailed health history, including current diagnoses and treatments.4,5 Medical identification for an individual with a chronic illness, thus, is critical to ensure healthcare providers give the appropriate medical treatment. There are various forms of medical identification, such as MedicAlert jewelry, laminated cards, and cellular phone apps. Research related to medical identification, however, is limited, with the primary focus on adherence to the use of medical identification. The basis of existing evidence is the provision of safe and effective medical treatment in an emergency. To provide such treatment, healthcare providers in the ER need quick and easy access to pertinent patient information such as diagnosis, medications, and allergies.6–8
The purpose of this article is to describe the findings from an improvement effort aimed at decreasing adverse events in the pediatric patient population with ESRD who require urgent or emergent care using an ER dialysis card as a communication tool for patients, families, and providers. The authors will discuss the benefits of using the ER dialysis card for improving care for pediatric patients within a pediatric hospital, and in other facilities in the community unaccustomed to managing the pediatric patient population.
In 2017, nurses at a pediatric dialysis center at a children's hospital in the southeastern United States identified knowledge about the management of pediatric dialysis patients as a factor that contributes to adverse events. Most of these adverse events were related to vascular access and fluid management when their patients seek treatment at an ER other than the children's hospital (from this point referred to as an outside ER). This pediatric dialysis center is located within a children's hospital that provides inpatient and outpatient specialized pediatric services including a pediatric ER. At this center, nephrologists and pediatric nurses trained in the care of children with ESRD provide care for 27 patients who receive either HD or PD. All the patients treated at this center have some form of dialysis access by means of a “life line” such as a central venous line (CVL), arteriovenous fistula (AVF), or arteriovenous graft (AVG).
Nineteen (70%) of the 27 patients live more than 60 miles from the pediatric dialysis center and any other hospital or medical facility with specialized pediatric services. Over the course of 3 years, there were several adverse events related to patients seeking emergency medical treatment at an outside ER. These events included, but were not limited to, the administration of nephrotoxic medications, which resulted in compromised residual glomerular filtration rate; inappropriate access of a CVL, AVF, or AVG that resulted in a bloodstream infection; and administration of a blood transfusion, which increased the patient's risk for a successful kidney transplantation because of allosensitization. Given the potential consequences of adverse events in children and adolescents with ESRD, it is imperative to educate and communicate with the patient and their families, as well as other healthcare providers who do not routinely provide medical care for these children and adolescents.
The Kidney Community Emergency Response and the National Kidney Foundation9 recommend individuals with chronic kidney disease have a medical identification card with them at all times. For children and adolescents with ESRD, a medical identification card provides healthcare providers with crucial medical information required to determine appropriate assessments and course of treatment. In an emergency where the parent or caregiver is not present, having a medical identification card decreases the risk of an adverse event resulting from the healthcare provider's lack of knowledge about the patient's diagnosis of ESRD.9
Traditional medical identification cards, jewelry, and cellular phone apps provide basic information such as diagnosis, allergies, and medications. Generally, the healthcare provider must call a 24-hour hot line to obtain additional information about the patient's health, primary or subspecialty providers, and emergency contact numbers.6 In addition to this basic information, it is critical for ER healthcare providers who treat children and adolescents with ESRD to have immediate access to information about the type of dialysis the child/adolescent receives; contraindications associated with the mode of dialysis; and indications for administration of intravenous fluids and blood products.
The goal of decreasing adverse events and enhancing communication for ESRD pediatric patients, families, and providers became the impetus for the development of an evidence-based educational tool, the ER dialysis card. The primary goal of the ER dialysis card was to provide parents and their child with ESRD the necessary information related to diagnosis, medical treatment, and contraindications that could influence the medical management of the child when seeking care at an outside ER. The secondary goal of the card was to improve communication between ER healthcare providers and nephrologists at the pediatric dialysis center when their patients seek treatment at an outside ER.
A pediatric nephrology nurse (co-author) initially conceptualized the development of a series of pediatric ER dialysis cards as an improvement intervention to address the communication concerns identified within the ESRD patient population. The concept was formalized by an improvement team within the children's hospital, and the ER dialysis cards were piloted from August 1, 2017, to November 30, 2017. Institutional review board approval was not required because this project was piloted according to the hospital's quality improvement guidelines and policy.
The National Kidney Foundation downloadable patient identification card, available on their website, served as the foundation for the pediatric ER dialysis card. The card allowed for the display of common basic information necessary for treatment in this patient population.9 Once the basic information was identified, the nephrology nurse collaborated with dialysis nurses, nurse educators, ER nurse practitioners, and nephrologists at the children's hospital to identify additional patient information to be included on the card. Contents of the card were customized for HD and PD patients. After several revisions, the team agreed upon a wallet-sized card and the information to be included on each card.
Each card included contact information for the nephrologists, diagnosis, type of dialysis, medications, allergies, recommended laboratory work based on vital signs, and instructions if the patient requires blood products. The HD card, depicted in Figure 1, also included guidelines for external central line access; and the PD card, depicted in Figure 2, included guidelines for port access and PD catheter care. The ER dialysis cards were reviewed and approved by the nephrology team. They were also reviewed, approved, and branded by the hospital's corporate communications department. During the initial development and pilot of the cards, the nurse vetted the cards with internal stakeholders. The feedback received from outside physicians consisted of unsolicited comments made to the on-call physician or physicians attending outreach education conducted by the organization's nephrologist.
The nurse who developed the card led in-services for the nurses, nephrologists, and other staff in the dialysis center to educate them on the purpose of the card and the importance of ensuring that the information on the card is up-to-date. The face-to-face in-service lasted 30 minutes and included the following information: (1) rationale for the development of the card; (2) content included on the card; (3) how to complete the card; (4) reviewing the card with the patient and family at each visit; (5) updating patient information on the card; and (6) location of blank cards for future use. Nurses who led the patient-family education group sessions had to attend an additional in-service. This face-to-face in-service lasted 30 minutes and included information that the nurses should communicate to the patients and their families about the card.
The in-service addressed educating patients and families on the following topics: (1) the purpose of the card; (2) information on the card; (3) how to use the card when seeking treatment at an outside ER or other outside healthcare clinic or facility; (4) importance of carrying the card at all times; and (5) ensuring information on the card is up-to-date. Before the introduction of the card to patients and their families, the nurse completed an ER dialysis card for each patient based on his/her current medical information related to diagnosis, medications, allergies, type of dialysis, treatment history, and contraindications related to medications and blood products.
The patient and family education group sessions lasted approximately 1 hour. At the beginning of the session, a family member for each patient completed a preassessment, which included these questions: (1) Where would you take your child in the event of an emergency? (2) What are the reasons why you take your child to an ER other than the hospital where your child receives dialysis? and (3) What would you tell the medical staff at the ER about your child? After the family members completed the preassessment, the nurse explained that the purpose of the preassessment was to gain an understanding of how and when families access outside ERs for their children with ESRD and what information about dialysis the family communicates to the ER staff.
The nurse begins the education by explaining to families that the ER dialysis card was developed to help them better communicate information about their child's dialysis with healthcare providers who are not involved in the routine care of their child. The nurse presented each patient and received family member with a completed card that contained the patient's information. The nurse reviewed the content of the card and explained that information on the card was specific to each patient. The nurse also informed families that contact information for the hospital operator was included on the card, so that they could get in contact with the on-call pediatric nephrologist for the pediatric specialized dialysis center.
Patients and families were instructed to keep the card with them at all times and to present the card to treating physicians or nurse practitioners when seeking care outside of the dialysis center. The nurse informed the patients and their families that they would receive an updated card every 1 to 2 months or as needed based on changes in the patient's treatment. At the end of the session, the same family members completed a post-assessment, which included four questions: (1) How do you contact the nephrologist or dialysis nurse on-call? (2) To whom would you give your ER dialysis card? (3) Where will you keep the ER dialysis card? and (4) Do you feel more prepared in the event of a trip to an outside hospital or ER?
Of the 27 patients treated at the dialysis center, 16 (59%) patients and their families received education on the ER dialysis card during the pilot period (August 1, 2017–November 30, 2017). The 11 patients who did not receive education during this time received education after the pilot period was completed. Approximately 70% (n = 11) of the families who received the education reported that, in an emergency, they would take their children to the closest ER, which would be an outside ER. Reasons given by families for taking their child to an outside ER included fever, problem with CVL, high blood pressure, shortness of breath, or really sick.
Before the education on the ER dialysis card, 94% (n = 15) of the families reported being unsure of what to tell an outside physician or nurse about their children beyond the fact that they had kidney disease and are on dialysis. One family member reported that in addition to kidney disease and dialysis, they would inform an outside physician or nurse to avoid manipulating the catheter or administering blood products unless medically necessary. After the education, all the families reported feeling better prepared to communicate their children's health information to an outside physician or nurse. Furthermore, all the families reported that they would keep the ER dialysis card with them at all times. Families also reported they would give the card to the physician or nurse at an outside ER to ensure that they had all the relevant information about their child and information on how to contact the on-call pediatric nephrologist at the specialized pediatric hospital.
During the pilot of the ER dialysis cards, there were four reported outside ER visits without adverse events. Each of the four parents reported giving the ER dialysis card to the treating physicians. This was validated by nephrologists in the pediatric dialysis center who were contacted by the outside ER physicians for consultation on the course of treatment for the patient. An unexpected outcome related to this project was the nephrologists' use of the ER dialysis card as a teaching tool during their educational outreach lectures for local hospitals that do not have specialized pediatric services or pediatric subspecialties.
This article describes the development, implementation, and evaluation of the ER dialysis cards. The implementation of the ER dialysis cards provided an educational opportunity for nurses to engage families and patients in improving their understanding of the patient's diagnosis, treatment, and contraindications related to the type of dialysis. Addressing knowledge gaps related to a disease and empowering families and patients to be their own advocates are critical for improving communication with healthcare providers about important medical issues. For children and adolescents with ESRD, ensuring that all critical information is available to the healthcare provider could be a key factor in decreasing the number of preventable adverse events that occur in ERs without specialized pediatric services or pediatric subspecialties.
The ER dialysis cards were used as an educational tool for the nephrologists when providing education to physicians in hospitals or facilities who do not have expertise in pediatric nephrology or in the care of children and adolescents with ESRD who require dialysis. Through these educational workshops, physicians in outside ERs become aware of the card's existence and purpose. The four outside ER visits show that the dialysis card promoted communication between the outside ER physicians and the nephrologists at the dialysis center.
There were limitations identified with implementation of the ER dialysis card. Ensuring that all families and patients received education about the card was challenging because of missed or rescheduled appointments. In some instances, the nurses had to provide one-on-one, rather than group education because of the family and patient schedules. This proved to be time-consuming but effective.
There were several lessons learned during this process. The initial ER dialysis cards were completed by hand because entering information into the electronic form was not feasible at the time the project was piloted. For easy data entry and access, the future version of the cards will be in a fillable electronic format. With the increased use of health apps for smartphones, the development of an ER dialysis card app will be explored in collaboration with the hospital's nursing informatics department. Gaining feedback about the cards from providers in the outside ERs will also help with incorporating potential improvements.
Although the ER dialysis card was developed for children and adolescents who require dialysis, other specialties can adapt this approach for other chronic illnesses that affect adults or children. The development of illness-specific cards could be a creative method for educating families on how to change their child's central line dressing or how to empty or change an ostomy bag. In addition, it is a good strategy for keeping families and patients up-to-date and knowledgeable about their child's medical condition. Finally, for children and adolescents with ESRD, the use of the ER dialysis card could be a life-saving tool in any given situation.
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Gwendolyn D. Childs, PhD, RN, is an Associate Professor at the University of Alabama School of Nursing. She is the director of the Clinical Scholars Program for Children's of Alabama, Birmingham, Alabama.
Rebekah Sims, RN, BSN, CPN, is a pediatric nephrology nurse clinician at Children's of Alabama, Birmingham, Alabama.
Keywords:© 2019 National Association for Healthcare Quality
Pediatrics; Patient Safety; End Stage Renal Disease