Marilyn J. Hockenberry

Three Instruments to Assess Fatigue in Children with Cancer: The Child, Parent and Staff Perspectives

The purpose of this study was to develop and test three instruments to measure fatigue in children with cancer from the perspectives of the child, parents and staff. The study consisted of three phases: instrument development, content validation, and estimations of psychometric properties of the three fatigue instruments. One hundred forty-nine children between the ages of 7-12 years presently receiving chemotherapy for cancer, 147 parents and 124 staff participated in this study. The instruments demonstrated strong initial validity and reliability estimates. This study is the first to provide valid and reliable instruments to measure fatigue in children with cancer.

Dexamethasone alters sleep and fatigue in pediatric patients with acute lymphoblastic leukemia

Dexamethasone improves the cure rate of childhood acute lymphoblastic leukemia (ALL) but causes physical and behavioral adverse events. The objective of the current study was to determine the effect of dexamethasone exposure on sleep and fatigue in pediatric patients with ALL.

Nocturnal Awakenings, Sleep Environment Interruptions, and Fatigue in Hospitalized Children With Cancer

PURPOSE/OBJECTIVES To describe nocturnal awakenings and sleep environment interruptions experienced by children and adolescents hospitalized for two to four days to receive chemotherapy and to assess the relationships among nocturnal awakenings, sleep environment interruptions, sleep duration, and fatigue. DESIGN Longitudinal, descriptive design. SETTING St. Jude Childrens Research Hospital and Texas Childrens Cancer Center. SAMPLE 25 patients with solid tumors and 4 with acute myeloid leukemia. METHODS Actigraphy, fatigue instruments, sleep diary, room entry and exit checklists, and blood samples. MAIN RESEARCH VARIABLES Nocturnal awakenings, sleep environment interruptions, sleep duration, and fatigue. FINDINGS The number of nocturnal awakenings per night as measured by actigraphy ranged from 0-40. The number of room entries and exits by a staff member or parent was 3-22 times per eight-hour night shift. The number of nocturnal awakenings was related to fatigue by patient report; patients who experienced 20 or more awakenings had significantly higher fatigue scores than those with fewer awakenings. Nocturnal awakenings also were significantly associated with sleep duration by patient and parent report. CONCLUSIONS Hospitalized pediatric patients with cancer who experience more nocturnal awakenings are more fatigued and sleep longer. IMPLICATIONS FOR NURSING Nurses may be able to control some of the factors that contribute to nocturnal awakenings and sleep environment interruptions that affect fatigue and sleep duration in hospitalized pediatric patients with cancer.

Double-Blind, Placebo-Controlled Study of Quality of Life, Hematologic End Points, and Safety of Weekly Epoetin Alfa in Children With Cancer Receiving Myelosuppressive Chemotherapy

PURPOSE To evaluate the effects of once-weekly epoetin alfa (EPO) on health-related quality of life (HRQOL), hemoglobin (Hb), transfusions, and tolerability in children with cancer. METHODS Anemic patients 5 years to 18 years of age receiving myelosuppressive chemotherapy for nonmyeloid malignancies, excluding brain tumors, received intravenous EPO 600 units/kg to 900 units/kg or placebo once-weekly for 16 weeks. Patients and parents completed the pediatric health-related quality-of-life generic scales (GS) and cancer-specific scales (CS). RESULTS One hundred eleven patients received EPO and 111 patients received placebo. Mean final values for GS total score (P = .763 among patients; P = .219 among parents) and CS domain scores (P > or = .238; P > or = .081, respectively) were not significantly different between treatment groups. EPO-treated patients had greater increases in Hb overall (P = .002) and were more likely to be transfusion free after 4 weeks (38.7% v 22.5%; P = .010). Change in Hb was correlated with change in PedsQL-GCS total score in the EPO group (r = 0.242; P = .018), but was not in the placebo group (r = 0.086; P = .430). Adverse events were comparable between treatment groups. CONCLUSION This study confirmed the tolerability and hematologic benefits of once-weekly EPO in children with cancer. No significant difference in HRQOL was detected between treatment groups, but a significant positive correlation was observed between Hb changes and HRQOL changes in the EPO group. Additional studies are warranted to assess HRQOL when anemia is managed optimally in children with cancer.

Symptom Management Research in Children With Cancer

A review of the clinical research studies published within the past 5 years revealed that efforts to manage symptoms of cancer and its treatments have not kept pace with new advances in the cure for cancer. Children with cancer continue to experience distressing physical symptoms caused by the disease and treatment. The purpose of this article is to provide a concise overview of the most common symptoms experienced by children with cancer. These symptoms include pain, nausea and vomiting, nutritional concerns, mucositis, and fatigue experienced by the child with cancer. Recommendations for future research are addressed.

Decision Making in Pediatric Oncology: Who Should Take the Lead? The Decisional Priority in Pediatric Oncology Model

Decision making in pediatric oncology can look different to the ethicist and the clinician. Popular ethical theories argue that clinicians should not make decisions for patients, but rather provide information so that patients can make their own decisions. However, this theory does not always reflect clinical reality. We present a new model of decision making that reconciles this apparent discrepancy. We first distinguish decisional priority from decisional authority. The person (parent, child, or clinician) who first identifies a preferred choice exercises decisional priority. In contrast, decisional authority is a nondelegable parental right and duty, in which a mature child may join. This distinction enables us to analyze decisional priority without diminishing parental authority. This model analyzes decisions according to two continuous underlying characteristics. One dominant characteristic is the likelihood of cure. Because cure, when possible, is the ultimate goal, the clinician is in a better position to assume decisional priority when a child probably can be cured. The second characteristic is whether there is more than one reasonable treatment option. The interaction of these two complex continual results in distinctive types of decisional situations. This model explains why clinicians sometimes justifiably assume decisional priority when there is one best medical choice. It also suggests that clinicians should particularly encourage parents (and children, when appropriate) to assume decisional priority when there are two or more clinically reasonable choices. In this circumstance, the family, with its deeper understanding of the childs nature and preferences, is better positioned to take the lead.

Nausea, Pain, Fatigue, and Multiple Symptoms in Hospitalized Children With Cancer

PURPOSE/OBJECTIVES To describe the prevalence, frequency, severity, and distress of multiple symptoms in hospitalized children with cancer and to examine the overall symptom scores and global distress in patients reporting nausea, pain, and fatigue. DESIGN Descriptive design with repeated measures. SETTING Inpatient pediatric hematology-oncology unit. SAMPLE 39 inpatients (ages 10-17) diagnosed with cancer. METHODS Five-day data collection using the Memorial Symptom Assessment Scale (MSAS) Pediatric 10-18. MAIN RESEARCH VARIABLES Thirty-one symptoms included in the MSAS Pediatric 10-18. FINDINGS The most common symptoms (prevalence greater than 34%) were nausea, fatigue, decreased appetite, pain, and feeling drowsy. Differences in symptom experiences occurred in the presence of nausea, pain, and fatigue compared to days when they were not reported (p < 0.001). Prevalence of pain and fatigue symptoms decreased over the five days (p < 0.05), but not nausea (p > 0.05). CONCLUSIONS Nausea, pain, and fatigue were among the most prevalent symptoms in hospitalized children with cancer; however, the most prevalent symptoms were not always the most severe or distressing. The presence of these symptoms significantly impacted symptom experience, including total burden of symptoms experienced by the child (i.e., global distress). IMPLICATIONS FOR NURSING Additional examination of symptom management is needed. Nausea and its related symptoms have received little attention and more effective interventions are warranted. Multidimensional scales and the use of handheld electronic devices to track symptoms may be used to provide a more comprehensive assessment and treatment of symptoms.

Variations in Pain, Sleep, and Activity During Hospitalization in Children With Cancer:

This study examines the pain experiences of children with cancer during hospitalization. A descriptive design with repeated measures was used to describe the location, intensity, and quality of pain, pain medications, amount of pain relief, and perceptions of sleep and activity during hospitalization. Data were collected once daily from the day of admission for up to a maximum of 5 consecutive days during hospitalization. Results show that more than half of the patients (27 of 49 patients) indicated they were having pain. Eleven patients (22.4%) had mild pain (mean = 2.3 ± 0.9 SD; range, 0.3-3.6), 10 (20.4%) had moderate pain (mean = 5.3 ± 0.2 SD; range, 5.0-5.5), and 6 (12.2%) had severe pain (mean = 7.6 ± 1.3 SD; range, 6.5-10.0). The highest pain intensity ratings occurred on day 1. Overall, most patients reported good relief after pain medications during hospitalization. Consistent assessment and implementation of pain interventions within the 24 hours of admission is recommended, with particular attention to persistent pain after painful procedures.

Sense of Humor, Childhood Cancer Stressors, and Outcomes of Psychosocial Adjustment, Immune Function, and Infection

The diagnosis, treatment, and side effects of childhood cancer have been described as extremely stressful experiences in the life of a child. Anecdotally, children report that a sense of humor helps them cope with the daily experiences of living with cancer; however, no research has examined sense of humor and childhood cancer stressors. This study investigated the effect of sense of humor on the relationship between cancer stressors and children’s psychosocial adjustment to cancer, immune function, and infection using Lazarus and Folkman’s theory of stress, appraisal, and coping. A direct relationship was observed between sense of humor and psychosocial adjustment to cancer, such that children with a high sense of humor had greater psychological adjustment, regardless of the amount of cancer stressors. A moderating effect was observed for incidence of infection. As childhood cancer stressors increase, children with high coping humor scores reported fewer incidences of infection than low scorers.

Oxidative stress and executive function in children receiving chemotherapy for acute lymphoblastic leukemia.

Neurocognitive sequelae following treatment for pediatric acute lymphoblastic leukemia (ALL) has been reported in a significant proportion of survivors, including those treated only with chemotherapy. Early identification of children “at risk” for neurocognitive problems is not yet reliable. Biomarkers of oxidative stress (e.g., oxidated phosphatidylcholine) in cerebral spinal fluid (CSF) have been correlated with intensity of methotrexate (MTX) treatment, suggesting an association with acute central nervous system toxicity.