Nursing Care of Patients with Childhood Cancer

History of Pediatric Oncology Nursing

Nursing is the largest health care occupation in the United States, representing 2.7 million jobs—a number that is expected to grow by 26% or more before 2020, faster than the national average of 14%. Because its roots are embedded in daily life and the caretaking role women traditionally assumed throughout history, nursing was not recognized as a profession until the mid-1800s, when Florence Nightingale identified the need for specialized education and training and developed the underpinnings of modern-day nursing practice.

The first nurses were considered generalists and cared for patients of all ages. Pediatric nursing emerged as a specialty in the early 20th century, when free-standing children's hospitals became more common. During this time, pediatric oncology patients were often cared for by pediatric nurses (sometimes called tumor therapy nurses) who learned to care for oncology patients through experience and self-directed, on-the-job training.

The subspecialty of pediatric oncology nursing first appeared in the late 1940s and early 1950s, when courses specific to cancer nursing were introduced by the American Cancer Society, the University of Washington, and the University of Minnesota School of Public Health. It was formally recognized as a subspecialty practice in the mid-1970s, when more nursing schools began offering education specific to pediatric oncology, and a small cohort of nurses formed the Association of Pediatric Oncology Nurses (APON). APON changed its name in 2006 to the Association of Pediatric Hematology/Oncology Nurses (APHON) and is considered the leading professional organization for registered nurses caring for children and adolescents with cancer and blood disorders.

Over the years, the role of pediatric oncology nurses has evolved to match advances in cancer treatment. During the 1880s and early 1900s, the predominant treatment modality for cancer was surgery, and nursing care was focused primarily on relieving pain and meeting other postsurgical needs of patients. Until the latter half of the 1900s, cancer was a metaphor for death and nurses had few resources available to care for the patients it affected. Children diagnosed with cancer commonly died, diagnostic techniques and treatment were often not available, and care was typically palliative. The general attitude among health care professionals was that there was little to offer the person with cancer except a cheerful manner and a few comfort measures.

After World War II, single-agent chemotherapy was introduced. This new therapy was administered only by physicians until the 1960s, when it was proposed that nurses assume this responsibility. Today, chemotherapy is almost always administered by nurses, who as a discipline have been instrumental in developing standards for safe practice and education related to chemotherapy administration and symptom management. Pediatric oncology nurses are also leaders in patient and family education, pain management, and palliative care. Over the past few decades, a number of advanced-practice nursing roles have gained prominence. The term advanced practice nurse applies to nurses in specialized roles, including clinical nurse specialists, nurse practitioners, certified nurse midwives, and nurse anesthetists, who have completed additional formal education and training. In pediatric oncology settings, it is the clinical nurse specialist and the pediatric nurse practitioner who are most commonly employed. Although their responsibilities vary among institutions, the clinical nurse specialist generally focuses on the education of the staff and of patients and families, whereas the pediatric nurse practitioner usually provides direct patient care in consultation with the patient's oncologist. As a primary oncology provider, the pediatric nurse practitioner follows patients and families over time and helps to formulate, implement, and evaluate the patient's plan of care. Depending on institutional, state, and federal regulations, a pediatric nurse practitioner may also prescribe medications and perform procedures, such as bone marrow biopsies and lumbar punctures. Standards and guidelines regarding professional behaviors and scope of practice developed by APHON and the American Nurses Association also guide the practice of advanced practice nurses.

Each year, 10,000 children will receive a diagnosis of childhood cancer and 1.16 million children younger than the age of 15 years will be hospitalized with a cancer-related diagnosis. Although the incidence of pediatric cancer has increased 29% during the past 20 years, advances in treatment have resulted in a long-term childhood survival rate of 79% for all childhood cancers. Some selected childhood cancers have realized long-term survival rates that now approach or exceed 95%. Despite improving statistics where the 10-year survival rate is 75%, cancer is the second leading cause of death in children from birth to age 14 years. Pediatric oncology nurses at all levels will continue to play critical roles in the care of children with cancer as new diagnostic and treatment techniques become available. Through persistence, vigilance, and dedication, nurses will shape the development and modification of practice standards that promote safe and effective pediatric cancer care.

Nursing Education and Professional Certification

When nursing first emerged as a profession, nursing education was typically provided by hospital-based diploma programs. Today, most diploma programs have closed and have been replaced by college- and university-based schools of nursing. Nurses specializing in pediatric oncology usually receive advanced training in all aspects of cancer and cancer treatment, including chemotherapy, management of complications related to therapy, pediatric oncology protocols, and the protection of human subjects. In addition to this specialized training, APHON and most health care organizations recommend that pediatric oncology nurses obtain professional certification as another vehicle to confirm proficiency and demonstrate knowledge of pediatric oncology practice standards, although it is not a requirement for practice. Certification was first introduced in 1999, and since then more than 1700 registered nurses have become certified pediatric oncology nurses.

Overview of the Pediatric Oncology Nurse's Role

The role of the nurse in the care of childhood cancer patients is well established. Pediatric oncology nurses rely on their intellect, critical thinking abilities, expert communication skills, technical expertise, and up-to-date knowledge when caring for their patients. These skills, when combined with intuition and caring, position pediatric oncology nurses to actively participate in and influence decisions concerning patient care and support, promote novel approaches to care, and optimize patient outcomes.

When caring for patients, pediatric oncology nurses integrate information about the treatment modality with observations of how the patient and family are responding to treatment and whether additional education and support are needed. Much of a pediatric oncology nurse's practice is grounded in standards of care and professional performance defined by APHON. These standards apply to clinical settings across the continuum of care and serve as a guide for nurses practicing in all aspects of care, from prevention, early detection, ongoing physical and psychosocial care, and long-term survival. These standards of care also define activities associated with each step of the nursing process—a process that includes assessing the patient, identifying problems requiring nursing intervention, specifying expected outcomes, planning and implementing a nursing plan of care, and evaluating the child's progress ( Table 69-1 ). With the patient as the central focus, the ultimate goal is to reestablish a level of optimal wellness as defined by the patient and family. The nursing process is dynamic and considers all dimensions of care; therefore, the plan of care is continually adjusted in response to changes in the patient's condition and treatment plan.

TABLE 69-1

The Nursing Process and Standards of Pediatric Oncology Nursing Care

From Association of Pediatric Oncology Nurses, American Nurses Association: Scope and standards of pediatric oncology nursing practice. Silver Spring, Md., 2007, Nurses Books.

Nursing Process	Standards of Care	Application: Case Study *
Assessment	The pediatric oncology nurse collects and documents data regarding the child and family.	Obtained a patient history of severe chemotherapy-related nausea and vomiting during first treatment regimen.
Diagnosis	The nurse uses assessment data from nursing and other disciplines to identify problems and determine nursing diagnoses.	Severe chemotherapy-related nausea despite antiemetics New protocol regimen is highly emetogenic. Assess the need for overnight hydration or next-day clinic infusion appointment for bolus to help with nausea control.
Outcomes Identification	The nurse identifies expected and desired outcomes specific to the patient and family and related to their physical and emotional health, education, growth and development, and effects of disease and treatment.	Expected outcomes: Patient will experience little or no nausea during chemotherapy and postchemotherapy period. Patient and family will communicate effectiveness of antiemetic and patient satisfaction with the regimen.
Planning	The nurse develops an individualized plan that prescribes interventions to attain expected outcomes.	Resume previous antiemetics (ondansetron, corticosteroids, and scopolamine). Add new antiemetic, aprepitant. Have patient maintain a diary describing nausea and individual drug effectiveness.
Implementation	The nurse implements the plan of care to achieve the expected outcomes for the child and family.	Administer first antiemetic doses in clinic to monitor effectiveness, and review timing of doses.
Coordination of Care	The nurse coordinates the delivery of care to support transition across the continuum of care.	College student describes past use of dronabinol and lorazepam to control nausea. Patient states that these agents made him feel “loopy” which impeded his ability to attend class and keep up with studies.
Health Teaching and Health Promotion	The nurse employs strategies to educate patient and family about maintaining health and providing a safe environment of care.	Provided a detailed calendar outlining scheduled chemotherapy, predicted times of nausea, medication schedule, and escalation plan for unresolved nausea Reviewed patient education materials associated with prescribed antiemetic agents. Reviewed prn use of additional antiemetics
Evaluation	Working with other members of the care team, the nurse evaluates outcomes that have been achieved and follows the nursing process to adjust the plan of care as needed.	Patient returned for cycle 2. Reviewed the drug diary with the patient to understand the duration of nausea and the patient's perspective on the effectiveness of the antiemetic regimen. Patient reported no nausea, did not require supplemental antiemetics, and reported increased satisfaction with plan, noting that he had previously found the inability to control nausea extremely distressing.

* Applying the nursing process to the management of postchemotherapy nausea in a 19-year-old college student with relapsed Ewing sarcoma. Case study of a patient at Dana-Farber/Children's Hospital Cancer and Blood Disorders Center managed by primary nurse A. Carnes, BSN, RN, CPON.

As discussed in this chapter and highlighted in Box 69-1 , pediatric oncology nurses are critical members of the oncology team, collaborating with colleagues and using an evidence-based approach to reduce the burden of cancer and meet the needs of patients and families.

Box 69-1

The Role of the Pediatric Oncology Nurse in Reducing the Burden of Cancer

Ensuring Families' Needs Are Met

Caring Practices

Provides compassionate, developmentally appropriate care
Considers cultural differences when developing and implementing a plan of care
Minimizes pain and suffering
Partners with patients and families to individualize approaches to care
Develops and coordinates all aspects of patients' experiences across the continuum
Collaborates with other disciplines to ensure optimal patient care
Demonstrates caring practices toward all patients, families, and members of the health care system

Communication and Collaboration

Serves as an advocate for the needs of the patients and families
Exchanges ideas with other members of the clinical team to advance clinical practice and patient care
Facilitates communication:
- With the community
- With the patients and families
- Between the patients and physicians
- Between the patients and other members of the health care team

Education and Learning

Teaches patients and families about the cancer diagnosis and its treatment
Prepares patients and families to manage home care needs and transition back into the community
Encourages techniques supporting compassionate clinical and emotional care
Educates other members of the clinical team
Creates educational materials for patients, families, and other health care providers
Influences nursing practice at a local, national, and international level

Clinical Inquiry and Systems Thinking

Uses clinical judgment and reasoning to care for patients effectively
Guides pediatric oncology nursing practice by identifying key research areas
Advances nursing science using the best available evidence as the basis for changes in practice
Masters the skills and competencies necessary to maximize clinical outcomes
Serves as a change agent
Critically examines the environment, identifies opportunities for change, and introduces strategies to ensure safe care

The Nurse's Relationship with Patients, Families, and Other Providers

Meeting the varied needs of pediatric oncology patients and their families requires a broad range of professionals. For this reason, most pediatric cancer centers draw on an interdisciplinary team, replacing the physician-centered model that was more common in the early years of cancer care. Today, members of the care team rely on one another's observations, knowledge, and skills, with physicians and nurses working as interdependent partners toward the care and cure of children with cancer. Equally important is coordinated and ongoing interaction between the child, the family, and all members of the interdisciplinary team.

Patient- and Family-Centered Care

Partnering with patients and families is the cornerstone of patient- and family-centered care. A model of care delivery commonly practiced in pediatric oncology settings is based on the understanding that the family is the child's primary source of strength and support, that the perspectives and information provided by the family, the child, or the young adult are important to clinical decision making, and that the psychosocial and cultural needs of the family as well as the patient must be considered throughout the care process. Guidelines developed by the Institute for Patient- and Family-Centered Care for clinicians interested in adopting a patient- and family-centered care model ( Box 69-2 ) emphasize the importance of partnering with the patient and family throughout the course of treatment. Respecting the insights and perspectives of the parents regarding their child's needs, empowering the patient and family by providing them with information, and engaging the child in his or her own care are key aspects of the model. Organizations are also urged to involve patients and families in defining and improving institutional policies and care delivery systems.

Box 69-2

From the Institute for Patient- and Family-Centered Care: www.ipfcc.org .

Patient- and Family-Centered Care

Guidelines for Providers

Respect and dignity. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.
Information sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information to effectively participate in care and decision making.
Participation. Patients and families are encouraged and supported in participating in care and decision making at the level they choose.
Collaboration. Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.

Although patient- and family-centered care is now widely embraced by pediatric health care professionals, there was a time when parental visitation was permitted only on a limited basis, information related to a child's diagnosis was often withheld from the patient and the family for fear of increasing anxiety, and decisions surrounding care were made within a paternalistic framework. Nurses were often caught in the middle when a patient did not know the diagnosis or the family was not involved in shared decision making. The cultural shift to a family-centered focus, along with improvements in survival rates, have helped members of the health care team develop a keener understanding of the long-term effects of diagnosis and treatment as well as an appreciation for how physiologic and psychological sequelae impact the patient and their family members. The patient- and family-centered approach has also helped parents to gain confidence in their ability to care for their child throughout the course of illness and has helped children and young adults to manage aspects of their own health care. Nurses routinely partner with patients and families throughout the cancer patient's care, from diagnosis to end of life, involving patients and families in establishing short- and long-term goals. This is particularly important for children because it gives them a feeling of control and enhances their sense of autonomy. Although the ability of the child to participate in goal setting and decision making depends in part on their maturity and cognitive capacities, approaches and techniques usually can be tailored to match their capabilities.

Meeting the Emotional and Developmental Needs of Patients and Families

Pediatric oncology nurses often spend long stretches of time with patients and families, particularly when patients are hospitalized or receiving outpatient chemotherapy. Because of their frequent interactions with patients and families, nurses are often the first to recognize practical issues faced by families. Over time, many families view nurses as advocates; however, the nurses' role is not to provide all of the support families need but rather to nurture support systems and identify available resources that might be of help.

Developing trusting relationships with patients and families is essential to effective oncology nursing practice. Nurses often gain this trust simply through the care provided, the hours spent at the patients' bedsides, and the efforts undertaken to meet the needs of patients and families while facilitating communication with other providers. Among children and adolescents, trust is often more readily gained when the actions of the nurse reflect an appreciation for developmental needs and when nurses are forthright, honest, and maintain developmentally appropriate boundaries regarding the behavior of the child or adolescent.

In addition to the emotional needs of patients and families, children undergoing treatment for cancer are at risk for significant delays in growth and development, which are often functions of the length and type of treatment and the side effects that children experience. Therefore, nurses caring for children with cancer incorporate developmentally supportive care into all phases of treatment. Such care requires knowledge of normal growth and development as well as an appreciation for the variations and abnormalities that may be encountered among children who are ill. A variety of approaches are used to support a patient's growth and development to help them reach their maximum personal potential. Providing age-appropriate care individualized to each patient, encouraging parental involvement, and fostering normalcy whenever possible by maintaining routines and usual activities are just a few of the strategies nurses use. Child-life specialists are routinely consulted to establish interventions for hospitalized children that are appropriate to developmental milestones.

Educating Patients and Families

A hallmark of comprehensive pediatric oncology care is educating patients and families about the diagnosis and treatment, empowering them to make informed decisions and become active partners in the treatment process. Because the care process typically spans multiple settings, patients and families are likely to receive information and instruction from a variety of clinicians and care providers. As a matter of course, teaching is a part of most patient encounters to help patients and families build skills and gain the self-confidence necessary to actively participate in ongoing care processes. When teaching patients and families, nurses adapt teaching methods to meet the educational needs of individual patients and families. Nurses supplement didactic instructions with written materials that augment topics covered in teaching sessions. Frequent opportunities to observe and practice the skills needed to manage care at home are typically offered. The use of technology for simulation and teaching is increasing as new educational formats become available.

Nurses have been instrumental on local, national, and international levels in developing educational materials for parents and age-appropriate materials for patients. In many hospitals and other care-delivery settings, nurses coordinate efforts to develop and evaluate educational materials on a wide range of topics, have the materials translated into various languages, and make them accessible to patients and families. A number of nursing organizations have also developed education resources. For example, APHON has developed a wide range of disease-specific pamphlets and education programs for patients and families that outline treatment options, side effects, and how to care for children at home. The Children's Oncology Group also offers an informative website, a handbook, and numerous networking opportunities for parents.

Caring for Patients and Families during the Diagnostic Phase

Receiving a diagnosis of childhood cancer is devastating and life altering. For parents, the diagnostic phase is marked by extreme emotional, physical, and spiritual distress, with many describing the period of waiting and not knowing as one of the most difficult times in the journey. It is during this waiting period that parents are often acutely aware that cancer is the probable diagnosis, but the type of cancer, the expected treatment, and the likely outcome have yet to be determined. As a result, this is a time of uncertainty, with many fears stemming from the unknown and questions the clinical team may not yet be ready to answer. Some of the questions known to be plaguing the parents during this phase include the following: Will our child survive? What will the future hold? Will our child suffer? Will we be able to comfort and protect our child from pain?

The nurse caring for a child suspected of having cancer is in a unique position to assess needs, identify cultural preferences, offer support and guidance, as well as ensure access to information needed to provide informed consent. Because this period typically involves interactions with a variety of health care providers, the nurse supports coordination of this process to optimize communication between the patients and families and members of the health care team. To do this, the nurse must possess a thorough understanding of the prediagnostic and diagnostic phases of pediatric malignancies that include, but are not limited to, the various tests and procedures commonly used for diagnosis.

The Diagnostic Workup

Confirming a cancer diagnosis can be a long process because many of the initial symptoms imitate normal childhood illnesses. The diagnostic workup includes obtaining a complete history of the current illness, the incidence and duration of symptoms, and the existence of any predisposing factors. It is during this phase that the nurse completes a comprehensive assessment that includes a physical examination, developmental assessment, and measurement of vital signs, height, and weight. The height and weight are used to calculate the body surface area, a key measure if cancer is confirmed because it is used to determine chemotherapy doses in patients 1 year of age and older (weight in kilograms, rather than body surface area, is typically used to calculate doses for children younger than 1 year). Accurate measurement of body surface area is critical; therefore, it is common practice to have two nurses independently measure the initial height and weight and verify the calculations of body surface area.

Because the diagnostic phase involves numerous tests to determine the extent of disease, the nurse's role is focused on collecting specimens, coordinating the scheduling of the diagnostic workup, and partnering with the patient and family. The nurse not only is responsible for ensuring that preparative regimens for specific tests are observed but also must facilitate the sequencing of various tests to ensure that procedures do not conflict with one another, that sufficient time is allotted for traveling from one department to another, and that tests are scheduled in a manner that permits judicious use of sedation. Before each test, the nurse speaks with the patient and family explaining the test and how long it will take, discussing whether a contrast medium or sedation will be used, and answering any questions they may have about the procedure.

The diagnostic phase is emotionally and physically difficult, with diagnostic tests provoking anxiety and causing pain. Studies regarding the patient perception of pain suggest that the pain associated with invasive procedures and ultimate treatment for cancer is greater than the pain associated with the disease itself. Fortunately, there are a wide array of pharmacologic and nonpharmacologic interventions available to minimize distress associated with pain and anxiety.

Informing Patients and Families of the Diagnosis

Once the diagnostic workup is complete and the type and extent of the cancer is known, news of the diagnosis is shared with the parents or guardian during a meeting with the physician and nurse. In some centers, this meeting is called the “Day One Talk.” The purpose of this meeting is to review the extent of the disease, discuss the proposed treatment, consider whether alternatives to that treatment are available, and introduce and obtain informed consent in the patient's preferred language. If the proposed treatment is a research protocol, all issues related to the protocol, including the intent of the research, must be clearly explained to ensure informed decision making. Studies regarding informed consent have found that parents of pediatric cancer patients often do not understand some of the issues related to participating in clinical trials, particularly that the purpose of research may be to benefit future patients rather than their own child.

The Day One Talk typically represents the first step toward developing the patient-provider relationship forming the basis for future care. Determining who should be present during the meeting is not always simple, and parents often ask the physician or nurse for advice about whether the patient should be in attendance. Consideration should be given to including adolescents because they may assume that information later received is not completely true and that the diagnosis and treatment are worse than those stated in the information they have been given. Including adolescents from the beginning may also help in later efforts to engage them in their own care. In cases involving younger children, a separate discussion tailored to the developmental level of the child is suggested, with the goal of informing the child about the treatment and clinical trial to obtain assent.

Receiving the news that a child has cancer and hearing the complex treatment plan can be devastating for parents who may be overwhelmed with feelings of anger, fear, guilt, sadness, and self-blame. Because of this, parents may have difficulty retaining, processing, and understanding the information. The signed consent form detailing the aspects of treatment and chemotherapy information sheets may serve as useful references for parents after the meeting.

If the patient is an adolescent, consideration must be given to the potential impact the treatment may have on fertility, as well as possible fertility-preservation options. It is generally recommended that this conversation take place as early as possible before beginning treatment. Some physicians choose to discuss fertility-related issues during the Day One Talk with a follow-up referral to reproductive specialists.

Supporting Patients and Families after Diagnosis

After the Day One Talk, nurses provide ongoing support as patients and parents express fears and concerns. Once the diagnosis is made, patients and families are suddenly thrust into a complex plan of treatment that involves hospitals, ambulatory clinics, and home care agencies. Nurses help to arrange and coordinate appointments and other aspects of treatment, as well as facilitate collaboration and communication among care providers in various locations. During the weeks and months after the diagnosis, nurses carefully monitor patients and families for signs that suggest they may be having difficulty coping. If any signs of distress are observed, nurses work with colleagues on the health care team to formulate a plan to help patients, parents, and other family members manage their stress to enhance the family's chances for the best possible outcomes. Many patients, parents, and family members benefit from working with psychosocial clinicians, attending family support groups, or having regularly scheduled family meetings, whereas others may require more intensive interventions.

Nursing Implications of Pediatric Cancer Treatment

The treatment of childhood cancer has evolved into an increasingly complex set of treatment modalities and methods. Although advances in treatment are responsible for marked improvements in survival rates, they have resulted in a broad range of side effects that require diligent monitoring and supportive therapy. Knowledgeable and well-trained pediatric oncology nurses are crucial to the safe and effective implementation of surgical, radiologic, and pharmacologic approaches to cancer treatment as well as to the management and oversight of clinical trials.

Nurses interact with patients during each treatment phase and in every care setting, making critical assessments and observations that guide decisions regarding the patients' care. Administering care specified by the treatment protocol, nurses continually monitor patients for complications and unexpected developments, offer emotional support to the patients and their families, and teach them what to expect during each treatment phase. Throughout the weeks, months, and years of care, nurses often develop a strong rapport with patients and families, becoming trusted sources of support and information.

Nursing Care Associated with Various Modes of Treatment

In this section, the specialized nursing care associated with the primary forms of pediatric oncology treatment—surgery, chemotherapy, radiation therapy, biotherapy, and hematopoietic stem cell transplant—are discussed. Complementary and integrative therapies and the nurse's role in clinical trials are also examined.

Surgery

Surgery is a major treatment approach for many pediatric solid tumors. Preoperative nursing care involves preparing patients and their families for the expected surgery and recovery by providing individualized teaching that is tailored to meet the unique needs of each patient and their family. In an effort to demystify the surgical experience, many hospitals offer programs that allow patients to visit the inpatient surgical unit, meet operating room nurses and other members of the staff, and see much of the equipment that will be used as part of the intraoperative care.

During the postoperative period, nurses support the recovery process and promote healing. Close monitoring of vital signs and the overall clinical status, coughing and deep breathing, frequent position changes, and early ambulation are just a few of the nursing interventions introduced after surgery to prevent complications. Comprehensive postoperative care includes ongoing assessment of airway clearance, level of pain, signs and symptoms of fluid shifts, and infection. Fever is a common postoperative complication warranting careful monitoring and prompt treatment in pediatric oncology.

Controlling postsurgical pain is a primary focus. Pain can have a profound effect on physical and emotional well-being, as well as discourage children from engaging in activities that promote recovery. Medications for pain control are typically initiated intraoperatively and are commonly continued for at least 72 hours after surgery or until the child is able to take medication by mouth. During the postoperative period, nurses regularly assess for the presence of pain and the effectiveness of prescribed analgesics by observing the patient for signs of discomfort using age-appropriate pain-rating scales. Analgesics may be administered prior to activities such as walking or dressing changes to promote comfort and reduce the anxiety associated with procedures or activities that may cause pain.

Preparing patients and their families for discharge from the hospital after surgery typically begins before or at the time of admission. Discharge teaching involves a review of the care regimen, as well as coaching caregivers on how to perform aspects of physical care at home. Emphasis is placed on ensuring caregiver understanding of the signs and symptoms of potential complications, when they should contact a provider, and how to reach someone in the case of an emergency. Follow-up appointments with the surgical team and pediatric oncology providers are usually scheduled before discharge.

Chemotherapy

Chemotherapeutic agents are considered high-risk medications because of their narrow therapeutic index and the complexity of the treatment regimens in which they are used. If administered inappropriately, there is the potential for serious harm and even death. Unlike other medications, administering chemotherapeutic agents to children introduces challenges because of the physiology of children, broad dosing ranges and schedules, widely differing protocols, weight-based dosing, and a high risk for toxicities. Statistics revealing the incidence of medication errors have triggered widespread changes and standardization with all aspects of the medication process, from prescribing, dispensing and administration. The majority of medication errors occur at the time of administration (41%), followed by dispensing errors (38%) and prescribing errors (21%) Because administering chemotherapy is the primary responsibility of pediatric oncology nurses, they are commonly viewed as the patient's last line of defense against medication errors. Therefore, the provider may be viewed as the first line of defense with prescribers initiating the medication process. Because prescribing errors related to chemotherapy agents can have serious and even lethal effects, nurses in most institutions follow a special process to verify chemotherapy orders before the agent is administered. Each step of the verification process is designed to ensure chemotherapy is administered safely, the treatment protocol is observed, required pretreatment test results are within acceptable ranges, and the correct chemotherapy agent and dose are administered. To minimize the risk for error, nurses complete specialized training and follow standards of practice for chemotherapy administration developed by APHON. In addition, they receive ongoing education relative to new agents and protocols before any new agents are introduced.

Before administration of chemotherapy to a patient, the nurse reviews the patient's medical record and interviews the patient and family to determine past experience with chemotherapy, level of tolerance, and antiemetics used. During the interview, the nurse explains the current treatment plan, discusses each agent, reviews potential side effects, and completes a medication reconciliation process. The medication reconciliation process includes a review of chemotherapeutic agents, antiemetics, over-the-counter preparations, as well as herbal and nutritional supplements taken since the last visit. Querying the patient and family about medications reinforces an understanding of the treatment plan and medication doses providing an opportunity to evaluate compliance with the prescribed plan. The nurse also conducts an assessment to determine drug-specific side effects (e.g., constipation) to determine whether the chemotherapy can be administered as prescribed and if the symptom management plan should be adjusted.

Because many chemotherapeutic agents are highly toxic, the National Institute of Occupational Safety and Health has developed standards to protect health care workers when handling or administering chemotherapy and caring for patients who have received chemotherapy. The standards identify personal protective equipment such as gowns, gloves, and eye shields that must be worn by those handling chemotherapeutic agents. In addition, standards recommend the use of closed-system drug transfer devices to prevent accidental disconnection and exposure. Research has shown that complying with these standards limits long-term exposure. Although some patients and families may be frightened when they first see nurses and other clinicians using protective equipment and procedures, most are quickly accepting once they understand the rationale for such measures. The safety concerns and precautions related to chemotherapy administration also apply to the patient's family, who must learn how to handle chemotherapeutic agents and the patient's body fluids. Body fluids can be a source of cytotoxic drugs and may pose a threat to the environment. As a result, special precautions for their disposal must be observed for 48 hours after chemotherapy administration, and family members should be given appropriate personal protective equipment and written instructions on how to handle the fluids safely. Family members of child-bearing age or who are pregnant should not prepare or administer cytotoxic drugs in the home. If they must handle the agent, they should minimize their risk by wearing appropriate protective equipment.

During the time a patient is receiving a dose of chemotherapy, the nurse monitors parameters specific to the particular agent. In addition to monitoring temperature, blood pressure, and heart rate, the nurse observes the patient for signs of an allergic reaction and watches the access site for signs of possible extravasation or leakage of intravenous fluid into the tissues. Special precautions must be taken to prevent extravasation when administering a vesicant because these agents can cause blistering, severe tissue injury, or tissue necrosis if they extravasate. If extravasation does occur, institutional polices and guidelines typically determine the appropriate actions to take.

After the chemotherapy has been administered, the nurse evaluates the effectiveness of the antiemetic regimen and monitors the patient for signs of toxicity and adverse effects. Detecting adverse effects early and taking quick action can minimize their severity. The nurse records the patient's response to treatment carefully because these observations are used by the care team to evaluate tolerance to treatment and determine whether changes need to be made in the overall plan of care.

For many families, the chemotherapy treatment phase is particularly difficult because they must cope with their own fears and anxieties while supporting the child or adolescent through treatment. Families often turn to the nurse for support and reassurance and find it comforting to work with a familiar and trusted team of nurses and providers. In some cases, families are asked to administer chemotherapy at home. Nurses work closely with these families to establish administration schedules, learn how to prepare and administer each medication safely, and understand which side effects to watch for and report ( Box 69-3 ). They also teach the family about special considerations related to administering some agents. Most protocols and manufacturers now include specific instructions for these situations.

Box 69-3

Data from references and .

General Guidelines for Administering Chemotherapy by Family Members in the Home

What Families Need to Know

1.
Treatment goals and plan, including the length of treatment, number of cycles and days of treatment
2.
A schema or calendar that shows the general treatment plan
3.
Names of all medications (brand and generic)
4.
Indications for all medications
5.
Doses of all medications, including the strengths
6.
How to administer the medications
- a.
  Safe handling (e.g., disposal of waste products and management of chemotherapeutic exposure or spill)
- b.
  How to measure the medications, especially liquids
- c.
  What foods or drinks the medications can be mixed with or taken with
- d.
  What foods or drinks to avoid when taking the medications
7.
How and when to take the medications (e.g., before or after meals, at bedtime)
8.
The start and stop date or criteria for stopping
9.
Expected and potential side effects and preventive measures for side effects
10.
When to report side effects and whom to call

Radiation Therapy

Radiation therapy is a common form of treatment for pediatric malignancies. The advancement of new technologies such as proton beam therapy is promising. Evidence, however, is still emerging regarding the potential role these new technologies will have in maximizing disease control and achieving high-quality survivorship. Often administered in an outpatient setting for a number of consecutive days and weeks, radiation therapy can have significant side effects in children. As part of the treatment planning process, most patients undergo radiation simulation to determine the radiation field. Simulation requires the use of markings, blocks, and immobilization devices to ensure that the radiation will be delivered consistently to the same location during each radiation session. Children younger than 4 years of age usually require sedation and central venous access for their simulation and radiation treatments. Children between 4 and 6 years of age may be able to tolerate the sessions without sedation if distraction techniques and nursing support are made available. Children older than 7 years of age usually tolerate the treatments well and are able to cooperate during the sessions.

Nursing care for a child undergoing radiation therapy includes discussing the treatment plan with the patient and family, describing what the simulation process involves, assessing the patient for side effects, and educating the patient and family how to prevent and manage side effects. Because the side effects of radiation therapy are related to the site that is irradiated, interventions to alleviate them vary accordingly. The mouth and skin are commonly affected, and all patients and families are taught proper mouth and skin care techniques before they begin treatment. Patients receiving radiation therapy in combination with chemotherapy or biotherapy are monitored closely because certain agents can produce an exacerbated effect known as radiation recall, a severe rash that requires special precautions and treatment.

Biotherapy (Biologic Response Modifiers/Biologic Therapies/Targeted Therapy)

In recent years, biotherapy, also known as biologic response modifiers (BRMs), biologic therapies, and targeted therapy, has emerged as a treatment modality using immunologic mechanisms to eradicate tumor cells. Biotherapy agents include a wide range of products such as vaccines, blood and blood components, allergenics, somatic cells, gene therapy, tissues, and recombinant therapeutic proteins. For example, there are vaccines to help prevent cancers as well as those designed to treat cancer. Vaccines, such as the human papillomavirus vaccine, help protect against certain strains of viruses and ultimately may prevent some cancers. Alternatively, vaccines that treat cancers are intended to increase the patient's immune response with the goal of attacking cells with one or more specific antigens.

Biologic therapies interact with the child's immune system to enhance the response to cancer and may cause toxicities influenced by the dose, route, and schedule of administration. The most common side effect of biotherapy is a flulike syndrome characterized by fever, chills, rigors, myalgias, headache, and fatigue. The role of the nurse in caring for the patient receiving biotherapy includes obtaining baseline vital signs, administration of any prescribed medications, and close monitoring for side effects. During and after administration, the nurse observes the patient for tachycardia, hypotension, fever, chills, anaphylaxis, and signs of a local reaction. Nurses also teach the patient and family about potential side effects that might occur at home, when such side effects should be reported, and symptom management techniques.

Hematopoietic Stem Cell Transplant

Hematopoietic stem cell transplant (HSCT) involves the intravenous infusion of autologous or allogeneic stem cells. This modality is used to treat malignant and nonmalignant diseases, and more than 4000 HSCTs were performed in 2009-2010 in patients younger than the age of 20, revealing a 20% increase from 1993-1994. Since its development in 1939 there have been advances in cell source; improved conditioning regimens; more exact human leukocyte antigen typing, thus improving donor and patient matches and increasing overall transplant survival; decreased incidence and severity of acute and chronic graft-versus-host disease; and improved rates of engraftment.

In an effort to promote improvement in cellular therapy, regenerative medicine, and patient outcomes, more than 85% of all transplant facilities in the United States partner with the Foundation for the Accreditation of Cellular Therapy (FACT). Founded in 1996, FACT has established standards for clinical and laboratory departments that apply to hematopoietic progenitor cells and other cells obtained from hematopoietic sources that include marrow, peripheral blood, and umbilical cord blood. These standards are focused on processing the clinical use of cellular therapy products as well as ensuring that they are collected and processed using strict controls. The primary role of the registered nurse is to participate in the coordination of the transplant and to ensure FACT standards related to nursing practice are understood and adhered to.

Preprocedure Phase.

There are 75 pediatric FACT accredited HSCT centers in the United States. As a result, many patients change providers and transfer care to one of these institutions for the duration of HSCT treatment. Nurses may help to facilitate patient transfer by coordinating aspects of the referral process, clinical evaluation, or preprocedure education in the patient and family's preferred language and counseling. The period before HSCT can be one of great anxiety for patients and families. Good communication between the referring institution and the transplant center helps to ensure a smooth transfer process and fosters trust between the families and the new provider. Preprocedure processes vary among institutions; however, most are focused on an exchange of information needed to appropriately plan for the transplant.

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