Jami S. Gattuso

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.

Parenteral nutrition associated with increased infection rate in children with cancer

Background. Recent metaanalyses of published controlled studies concluded that adult patients with cancer randomly assigned to receive parenteral nutrition had higher rates of infectious complications than control subjects.

Developing a conceptual model for fatigue in children

The purpose of this research study was to define fatigue experienced by children with cancer and to begin development of a conceptual model.Two major Paediatric Cancer Centers in the Southern USA participated in this study. Children who participated in this study were in the out-patient clinic or in the hospital. Five focus groups with a total of 14 children between 7 and 12 years-of-age were held over a 2-month period of time. Focus groups were used to first assess the contextual understanding and essential attributes of fatigue in 7 to 12-year-old children. Each focus group session lasted 30 to 45 minutes, was audiotaped and transcribed verbatim.A team of four researchers used content analysis to evaluate the transcripts. Codes and definitions were developed for the characteristics of fatigue, causes of fatigue and what alleviates fatigue. Concept analysis was completed as a basis for developing the conceptual framework. Eight codes emerged to define fatigue. Seven codes were used to describe the causes of fatigue.An additional three codes were used to describe what alleviated fatigue.A conceptual definition for fatigue experienced by children with cancer emerged from the data, and a conceptual model was developed to demonstrate relationships between fatigue and contributory and alleviating factors.The conceptual work for model development contributes to understanding fatigue in children with cancer and serves as a basis for establishing operational definitions

Measuring hopefulness in adolescents.

From St Jude Children’s Research Hospital and University of Tennessee, Memphis, TN. Address reprint requests to Pamela S. Hinds, RN, PhD, CS, St Jude Children’s Research Hospital, 332 N Lauderdale St, Memphis, TN 38105.

Mechanisms of dexamethasone-induced disturbed sleep and fatigue in paediatric patients receiving treatment for ALL

BACKGROUND Dexamethasone contributes to high cure rates in paediatric acute lymphoblastic leukaemia (ALL) but significantly and adversely alters sleep and fatigue. Herein we explored three mechanisms (pharmacokinetics, serum albumin and pharmacogenetics) through which dexamethasone may cause debilitating fatigue and disrupted sleep. METHODS We enrolled 100 patients on a 10-d study: 5-d of no dexamethasone (OFF DEX) followed by 5-d of dexamethasone (ON DEX) during continuation chemotherapy. Sleep variables were collected with continuous actigraphy on days 1 through 5, both OFF DEX and ON DEX. On days 2 and 5 of each 5-d period, parents and patients 7 years of age and older completed a sleep diary and Fatigue Scale questionnaire. Blood was collected at 0 (pre-dexamethasone), 1, 2, 4 and 8 h after the first oral dexamethasone dose for pharmacokinetic analysis. Serum albumin concentration was retrospectively analysed in stored samples. Patient DNA was genotyped for 99 polymorphic loci in candidate genes associated with glucocorticoid metabolism. RESULTS Dexamethasone clearance was significantly greater in younger patients than in older ones and in lower risk patients. In multiple regression models, risk group was significantly related to pharmacokinetic parameters. We found that polymorphisms in three genes (AHSG, IL6, POLDIP3) were significantly associated with sleep measures but not with fatigue. CONCLUSION Risk group had the most significant relationship with disrupted sleep in patients while on dexamethasone. Serum albumin levels had neither a direct relationship with sleep or fatigue variables nor an indirect relationship through systemic exposure to dexamethasone. We identified candidate genes that may help explain the adverse events of disrupted sleep in paediatric patients receiving dexamethasone.

Adaptation to illness in adolescents with cancer.

comprehensiveness. This evaluation by experts, as well as support from the theoretical framework and review of literature underlying the study, supported the content validity of the instruments developed for 9to 18-year-old children and adolescents with cancer and their parents. Data describing the informational needs of child and adolescent cancer patients and their parents were collected either during the patients’ scheduled clinic visits or during pre-arranged home visits.

Psychometric and Clinical Assessment of the 13-Item Reduced Version of the Fatigue Scale–Adolescent Instrument:

Fatigue is one of the most common and distressing symptoms experienced by adolescents during and after treatment for cancer. The lack of reliable and valid instruments has prevented an accurate assessment of the trajectory of fatigue among adolescent oncology patients. The purposes of this study were to identify the items on the Fatigue Scale–Adolescent (FS-A) that distinguished adolescents with high fatigue and to identify the most sensitive and specific score (“cut score”) in order to identify those in need of a fatigue intervention. Rasch methods were used to identify FS-A items that distinguished adolescents with high cancer-related fatigue, and results indicated that the 14-item FS-A could be reduced to 13 items. The 13-item FS-A was assessed for its psychometric properties, with application of the receiver operating characteristics curve analysis to the responses from 75 adolescents. The internal consistency coefficient was .87, and a 4-factor confirmatory analysis achieved good fit coefficients. The identified cut score was 31, with 66.6% sensitivity and 82.6% specificity; 16 (21.33%) of the patients scored 31 or higher. The 13-item FS-A has acceptable psychometric properties and is able to identify adolescent oncology patients with high fatigue.

Creating the Basis for a Breast Health Program for Female Survivors of Hodgkin Disease Using a Participatory Research Approach

PURPOSE/OBJECTIVES To learn from female survivors of Hodgkin disease about their perceptions of their current health status and future health risks, self-care practices to prevent or diminish health risks, and what kind of breast health program could benefit them, including the most effective methods and optimal times for learning about breast health. DESIGN Participatory research using focus groups. SETTING Urban pediatric cancer center. SAMPLE 1 African American and 19 Caucasian female survivors of Hodgkin disease aged 16-26 years, diagnosed at least two years before the start of the study, and treated with mantle radiation therapy. Participants were recruited during visits to an outpatient clinic. METHODS Six open-ended questions were asked during three separate focus group sessions. Transcribed data were evaluated by content analysis techniques and analyzed to identify common themes. MAIN RESEARCH VARIABLES Current health status and perceived health risks, current health practices, and effective methods and timing for breast health teaching. FINDINGS Survivors reported feeling damaged by their cancer and its treatment and perceived that they were at risk for breast cancer. Self-care and risky behaviors also were reported. Internal influences (e.g., fear) and external influences (e.g., family) motivated survivors to participate in health promotion activities. Effective methods identified for learning about breast health included having access to other survivors, being respected as an adult, and having one-on-one staff teaching and peer support. The preferred timing of teaching varied, but survivors generally supported a gradual provision of information. CONCLUSIONS A positive listening environment is important for developing a breast health program for survivors. An essential first step is to create an opportunity for survivors to tell about their experiences with cancer, including its impact on their lives. Information regarding breast health must be provided in multiple formats during and after treatment if good practices are to be undertaken. IMPLICATIONS FOR NURSING The provision of adequate information during and after therapy as well as peer counseling in a positive listening environment are important in helping survivors participate in health promotion activities.

Adolescents\' preferences for treatment decisional involvement during their cancer

This qualitative study investigated the medical decision‐making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision‐making involvement.

Creating a hospital-based nursing research fellowship program for staff nurses.

Staff nurses are expected to participate in nursing research and to use study findings. Insufficient institutional support and uncertainties about how to participate in the research process can prevent staff nurses from meeting these expectations. We describe a newly developed nursing research fellowship program designed for staff nurses who practice in an acute care setting. An overview of the entire curriculum and the outcomes of the first year of the program are described.