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.
This prospective, two-site, randomized, controlled pilot study assessed the feasibility of an enhanced physical activity (EPA) intervention in hospitalized children and adolescents receiving treatment for a solid tumor or for acute myeloid leukemia (AML), and assessed different statistical techniques to detect the intervention's sleep and fatigue outcomes. Twenty-nine patients (25 with a solid tumor and 4 with AML) participated. Data were collected from actigraph; patient, parent, and staff nurse reports of patient fatigue; parent sleep diaries; and patient charts. The intervention was successfully implemented 85.4% of the scheduled times. We used two different statistical methods to analyze the longitudinal data. Using an ANOVA model, sleep was significantly more efficient in the experimental arm than in the control arm when daily differences from baseline sleep efficiency values were averaged and compared (F=4.17, P=0.053). However, in a mixed model (repeated measures) analysis, sleep duration (F=0.54, P=0.47) and sleep efficiency (F=0.04, P=0.85) were not seen to differ between study arms. We conclude that an inpatient intervention of EPA can be delivered to children and adolescents receiving chemotherapy. Our findings identify design and statistical considerations for a future effectiveness study of the EPA intervention in hospitalized pediatric oncology patients.
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.
Symptom clusters can have a significant impact on children's and adolescents' quality of life during cancer treatment. Early recognition and intervention for these symptoms are an important nursing role.
There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children’s Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.
Adolescents undergoing treatment for cancer rate fatigue as their most prevalent and intense cancer- and treatment-related effect. Parents and staff rate it similarly. Despite its reported prevalence, intensity, and distressing effects, cancer-related fatigue in adolescents is not routinely assessed during or after cancer treatment. We contend that the insufficient clinical attention is primarily due to the lack of a reliable and valid self-report instrument with which adolescent cancer-related fatigue can be measured. Our aim was to determine the reliability and construct validity of a new instrument and its ability to measure change in fatigue over time. Initial testing involved 64 adolescents undergoing curative treatment of cancer who completed the Fatigue Scale-Adolescent (FS-A) at two to four key points in treatment in one of four studies. Internal consistency estimates ranged from 0.67 to 0.95. Validity estimates involving the FS-A with the parent version ranged from 0.13 to 0.76; estimates involving the staff version and the Reynolds Depression Scale were 0.27 and 0.87, respectively. Additional validity findings included significant fatigue differences between anemic and nonanemic patients (P=0.042) and the emergence of four factors in an exploratory factor analysis. Findings further indicate that the FS-A can be used to measure change over time (t=2.55, P<0.01). In summary, the FS-A has moderate to strong reliability and impressive validity coefficients for a new research instrument.
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