Purpose/Objectives: To (a) investigate fatigue and sleep patterns of children and adolescents at home and (b) examine factors associated with fatigue and sleep.
Design: Descriptive with repeated measures.
Setting: Homes of study participants in Los Angeles and Orange, California.
Sample: 35 children and adolescents with cancer.
Methods: Data were collected using the PedsQL™ Multidimensional Fatigue Scale, which was completed once at home by each participant, and sleep actigraphs, which were worn for five days at home following discharge from hospitalization.
Main Research Variables: General fatigue, cognitive fatigue, sleep-rest fatigue, sleep duration, sleep quantity, sleep efficiency, and wake after sleep onset.
Findings: More than half of the participants had problems with fatigue at home. Significant correlations were found between sleep/rest fatigue and sleep duration. Factors that affected fatigue were age, gender, and cancer diagnosis. Adolescents had more problems with fatigue than children, and female patients had more problems with fatigue than male patients. Patients with sarcoma had more problems with fatigue than those with leukemia, lymphoma, and other cancer diagnoses. Adolescents slept less than children.
Conclusions: Children and adolescents with cancer have fatigue and sleep problems at home that vary by age, gender, and cancer diagnosis.
Implications for Nursing: Data from the current study support the need for nurses to provide teaching about fatigue and sleep at home in children and adolescents with cancer. Future studies are needed to examine interventions that may alleviate fatigue and improve sleep at home.
Children and adolescents undergoing cancer treatment frequently experience distressing symptoms, such as fatigue and sleep disturbance (Edwards, Gibson, Richardson, Sepion, & Ream, 2003; Miller, Jacob, & Hockenberry, 2011; Walker, Gedaly-Duff, Miaskowski, & Nail, 2010; Walker, Johnson, Miaskowski, Lee, & Gedaly-Duff, 2010). Fatigue is often characterized by physical symptoms, including lack of energy, decreased physical ability, and feelings of tiredness. It may be experienced before the initiation of treatment (Goedendorp, Gielissen, Verhagen, Peters, & Bleijenberg, 2008), during cancer treatment (Hinds, Hockenberry, Gattuso, et al., 2007; Perdikaris et al., 2009; Purcell et al., 2010), in disease-free survivors (Andrykowski, Donovan, Laronga, & Jacobsen, 2010; Bower et al., 2006), and at the end of life (Murphy, Alexander, & Stone, 2006; Teunissen et al., 2007; Ullrich et al., 2010).
Although the severity and frequency of fatigue have frequently been reported, many studies have not examined the multiple dimensions of fatigue—namely general, cognitive, and sleep/rest fatigue. The strategies for minimizing cancer-related fatigue in previous studies were predominantly physical exercise training interventions that primarily addressed the physical dimension and had documented benefits regarding fat mass, muscles, bones, flexibility, and endurance (Baumann, Bloch, & Beulertz, 2013; Braam et al., 2013; Chang, Mu, Jou, Wong, & Chen, 2013; Cramp & Daniel, 2008; Huang & Ness, 2011; Keats & Culos-Reed, 2008). However, other nonpharmacologic interventions (e.g., cognitive behavioral therapy, mind-body relaxation therapy, music therapy, sleep hygiene) may be useful in addressing other dimensions of fatigue, such as cognitive and sleep/rest fatigue, particularly in children who may not be able to perform physical exercise.
Multidimensional fatigue measures define the physical dimensions of fatigue with items such as feeling tired or experiencing physical weakness (Hinds, Hockenberry, Tong, et al., 2007; Varni, Burwinkle, Katz, Meeske, & Dickinson, 2002; Varni, Burwinkle, & Szer, 2004). Cognitive fatigue is defined by items such as having difficulty with paying attention to things or remembering what people say (Varni et al., 2002). Sleep/rest fatigue is defined by items such as sleeping a lot, having difficulty with sleeping through the night, feeling tired when waking up in the morning, or spending a lot of time in bed and taking a lot of naps (Varni et al., 2002).
Very little information is available about the cognitive and sleep/rest dimensions in children with cancer who are at home. The purpose of the current study was to examine (a) fatigue and sleep patterns at home and (b) whether factors such as age, gender, and cancer diagnosis were associated with fatigue and sleep patterns at home.
The incidence of children diagnosed with all forms of invasive cancer has increased from 11.6 cases per 100,000 children in 1975 to 15.7 cases per 100,000 children in 2011 (Howlader et al., 2014). Children with cancer experience multiple symptoms, with the most common being fatigue, sleep disruptions, pain, nausea, and decreased appetite (Miller et al., 2011; Walker, Johnson, et al., 2010). These symptoms are associated with diminished quality of life (Berger et al., 2005).
Fatigue is one of the most prevalent symptoms in hospitalized children with cancer (Miller et al., 2011), and it often begins at the time of diagnosis and continues throughout treatment (Williams et al., 2012; Yeh, Wang, Chiang, Lin, & Chien, 2009). More than 50% of children with advanced cancer report drowsiness and energy loss (Van Cleve et al., 2012), and fatigue typically worsens at the end of life (Tomlinson, Hinds, Bartels, Hendershot, & Sung, 2011). Ullrich et al. (2010) found that 96% of children experienced fatigue during the last month of life, noting that it is a common source of suffering at the end of life. Walker, Gedaly-Duff, et al. (2010) discovered that fatigue was associated with negative emotions (e.g., feeling sad, mad, and sorry for oneself) and was reported to be burdensome and distressing. Children receiving treatment for cancer experience more fatigue-related distress than children not receiving treatment (Hinds, Hockenberry, Gattuso, et al., 2007; Jalmsell, Kreicbergs, Onelöv, Steineck, & Henter, 2006; Pöder, Ljungman, & von Essen, 2010; Theunissen et al., 2007; Yeh et al., 2009). Fatigue symptoms often continue in young survivors even after treatment is completed (Baggott, Dodd, Kennedy, Marina, & Miaskowski, 2009).
Lack of sleep is recognized as a problem that commonly occurs in patients with cancer and may be related to a disruption in the circadian control of the cell cycle (Rosen, Shor, & Geller, 2008). Sleep problems may be associated with cancer itself or treatments for cancer (e.g., dexamethasone) (Hinds, Hockenberry, Gattuso, et al., 2007), as well as with pain and symptoms associated with the disease and its treatment (Sateia & Lang, 2008). In hospitalized children with cancer, sleep fragmentation is linked with nocturnal awakenings related to medical treatments and environmental interruptions (Hinds, Hockenberry, Rai, et al., 2007). Treatments may affect sleep quality, mood (e.g., anxiety, irritability), and behavior (Hinds, Hockenberry, Gattuso, et al., 2007).
Gedaly-Duff, Lee, Nail, Nicholson, and Johnson (2006) examined sleep disturbance during a three-day period in children with leukemia after they had taken vincristine. Children participating in the study were asked to wear a wrist actigraph for 72 hours so the authors could obtain activity data for naps and nighttime sleep periods. Actigraphy data showed that the children slept for 6–10 hours, with frequent awakenings. Healthy children similar in age (i.e., aged 6–13 years) typically sleep for 9–11 hours and are awakened one or two times during the night (National Sleep Foundation, 2015).
Rosen et al. (2008) noted that sleep problems in children with cancer may be associated with the direct effects of cancer and treatments for cancer (e.g., neurosurgery, chemotherapy, radiation therapy) or indirect effects from treatments (e.g., pain, fatigue, endocrinopathies, organ damage). Several studies have documented that sleep/wake disturbances occur during all phases of cancer care in children (Clark, Cunningham, McMillan, Vena, & Parker, 2004; Gibson, 2005; Gibson et al., 2005; Gibson, Edwards, Sepion, & Richardson, 2006; Vena, Parker, Cunningham, Clark, & McMillan, 2004).
Research on fatigue and sleep is predominantly focused on hospitalized patients who are undergoing chemotherapy. In several studies, fatigue was found to be associated with treatments (e.g., chemotherapy, corticosteroids) and nocturnal awakenings (Gedaly-Duff et al., 2006; Hinds, Hockenberry, Gattuso, et al., 2007; Rosen et al., 2008). However, very little information is available about fatigue and sleep experiences at home.
The symptom management theory (SMT) consists of three components (i.e., symptom experience, symptom management, and symptom outcomes) that are highly interdependent (Dodd et al., 2001; Humphreys et al., 2008). The underlying premise of SMT is that effective symptom management requires consideration of the three components.
Symptom experience consists of the individual’s perception, evaluation, and response to a symptom. Symptom management describes the “what, where, why, how much, to whom, and how” of interventions, which guide the clinician or investigator in selecting appropriate symptom management strategies (Dodd et al., 2001, p. 170) and are intended to avoid, postpone, or reduce the symptom experience (Humphreys et al., 2008). The symptom outcomes component encompasses symptom status and seven other outcomes (i.e., functional status, emotional status, self-care, costs, quality of life, morbidity and comorbidity, and mortality) that the individual may experience as the result of symptom experience and management (Dodd et al., 2001).
SMT also places the process of symptom management within the context of three domains of nursing science: (a) person (demographic, psychological, sociologic, physiologic, and developmental variables), (b) environment (physical, cultural, and social variables representing the “aggregate of conditions” in which a symptom is occurring), and (c) health and illness (risk factors, health status, and disease and injury) (Dodd et al., 2001, p. 171).
In this study, the current authors investigated the symptom experience of fatigue and focused on the fatigue experience in three dimensions (i.e., general, cognitive, and sleep/rest). The current authors also examined sleep, a variable within the symptom outcome of functional status, and explored whether sleep was associated with the symptom experience of fatigue. In addition, the current authors looked into whether fatigue and sleep varied by the domains of person (i.e., age, gender, and ethnicity), environment (i.e., home setting), and health and illness (i.e., cancer diagnosis and reasons for hospitalization).
The current study was part of a larger study that used a descriptive research design with repeated measures to examine pain and symptom experience in children at home following discharge from hospitalization.
Recruitment occurred from the pediatric oncology programs of Children’s Hospital of Orange Country and Children’s Hospital Los Angeles, both in California. Both programs provide a full range of clinical services for infants, children, and adolescents with cancer and blood diseases, and they treat more than 1,100 new patients each year. Although recruitment occurred during patient hospitalization, data collection took place at home. Participants had to be (a) aged 8–17 years, (b) diagnosed with cancer, (c) scheduled to be discharged to home within 24–48 hours, and (d) able to speak and/or read English. Consent from the parent or legal guardian, as well as assent from the child, also had to be obtained. Exclusion criteria included a prior history of neurologic impairments (e.g., visual, hearing, or motor function deficits, developmental delay) that precluded completion of data collection procedures.
The current study was a pilot study to examine fatigue experiences in children with cancer at home, and the sample size was guided by the minimum required for pilot studies, which is 30 (Hertzog, 2008). The sample size of 35 in the current study allowed for an estimation of a moderate value to be similar to the mean total fatigue score (mean = 71, SD = 18.2) on the 0–100 PedsQL™ Multidimensional Fatigue Scale (MFS) previously reported by Varni et al. (2002) using a one-sample normal (exact method) with a 0.05 two-sided significance level and 0.8 power.
Two advanced practice RNs (APRNs) serving as co-investigators consulted with the oncology teams to determine which patients were eligible for the study. APRNs provided detailed information about the study to parents and children. Consent from the parent and assent from the child were obtained by APRNs when both agreed to participate. The research associate who received institutional review board certification and training in all data collection procedures instructed the parent and child to complete the data collection instruments at home, monitored completion of data collection instruments, and followed up with parents for logistic and technical issues. Parents were instructed to assist their children with completing the data collection instruments at home, as needed. Institutional review boards of the two participating children’s hospitals and of the University of California, Los Angeles, approved the study procedures.
At the time of enrollment, the research associate collected demographic information (i.e., age, gender, and ethnicity) and relevant medical information (i.e., cancer diagnosis, reasons for hospitalization, and medications) of each child from the parent or the nurse.
Fatigue: The MFS, which consists of three subscales representing the different dimensions of fatigue (i.e., general, cognitive, and sleep/rest), was used to measure fatigue (Varni et al., 2002, 2004). Responses to questions related to how problematic each item was ranged from 0 (never a problem) to 4 (almost always a problem). Similar to the scoring procedures reported by Varni et al. (2002), items were reverse scored and linearly transformed (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0) to yield a score range of 0–100. Internal consistency reliability for the MFS was established previously, with the total score internal consistency reliability indicating a Cronbach alpha of 0.95. The Cronbach alphas for general fatigue, cognitive fatigue, and sleep/rest fatigue were 0.93, 0.93, and 0.88, respectively (Varni et al., 2002).
Construct validity indicated significant differences between healthy children and pediatric patients with cancer, respectively, for the total MFS (mean = 80.5, SD = 13.3 versus mean = 70.9, SD = 18.2, p < 0.001); general fatigue (mean = 85.3, SD = 14.9 versus mean = 74.9, SD = 19.6, p < 0.001); cognitive fatigue (mean = 81.1, SD = 17.4 versus mean = 70.9, SD = 22.3, p < 0.001); and sleep/rest fatigue (mean = 75, SD = 18.8 versus mean = 67, SD = 23.1, p < 0.001) (Varni et al., 2002). Construct validity of the MFS was further demonstrated by comparing healthy children (for total MFS, mean = 80.5, SD = 13.3) with children with cancer during treatment (mean = 68.5, SD = 17.1) and at 12 months off treatment (mean = 70.9, SD = 19.9, p = 0.001). The MFS, which takes less than five minutes to complete, was done at the time of enrollment, on day 3 at home, and at the subsequent clinic appointment. Only data from home were included in the current study.
Sleep: A wristwatch-style actigraph device was used to measure (a) sleep duration (total minutes scored as sleep consisting of naps during the day and sleep during the night), (b) sleep efficiency (percentage of time the child was asleep in relation to the amount of time spent in bed), (c) sleep quantity (percentage of sleep duration in minutes scored as sleep), and (d) wake after sleep onset (number of minutes awake during the night). The reliability and validity of actigraphs in children are well established, with high correlations between wrist- and waist-recorded activity and sleep variables (sleep duration, r = 0.78, p < 0.001; sleep percentage, r = 0.89, p < 0.001; sleep efficiency, r = 0.91, p < 0.001) (Paavonen, Almqvist, et al., 2002; Paavonen, Fjällberg, Steenari, & Aronen, 2002).
All data were entered into SPSS®, version 20.0, and checked by two research associates. Descriptive statistics were used to summarize total and subscale fatigue scores, the different dimensions of fatigue (i.e., general, cognitive, and sleep/rest), and sleep variables (i.e., sleep duration, sleep efficiency, sleep quantity, and wake after sleep onset). Pearson’s correlation was used to examine relationships between fatigue and sleep variables, whereas t tests were used to examine differences by age (children [aged 8–12 years] versus adolescents [aged 13–17 years]) and by gender (male versus female). Analyses of variance were used to examine differences by cancer diagnosis (i.e., leukemia or lymphoma, sarcoma, and other diagnoses).
Among the 42 children who were enrolled in the current study, 7 did not have complete fatigue and/or sleep actigraph data. Therefore, 35 participants were included in the analyses, with more than half being female, Hispanic, and diagnosed with leukemia or lymphoma (see Table 1). The mean age was 12.8 years (SD = 2.7 years). The majority (60%) were hospitalized for chemotherapy. Others were hospitalized for fever and/or neutropenia (29%) and other reasons, such as vomiting, diarrhea, and dehydration (11%).
The overall mean total fatigue score was 76.2 (SD = 15.4). More than half (54%) of the study participants said they often or almost always had problems with fatigue (MFS scores of less than 75 on the 0–100 scale). The mean subscale scores for the different dimensions of fatigue were 76.3 (SD = 20.8) for general fatigue, 80.1 (SD = 19.1) for cognitive fatigue, and 72.3 (SD = 16.8) for sleep/rest fatigue. Table 2 compares fatigue by age, gender, and cancer diagnosis. Adolescents had significantly more problems than children with overall fatigue—specifically general and sleep/rest fatigue, but not cognitive fatigue. Female patients had significantly more problems than male patients with not only overall fatigue (mean = 70.2, SD = 15 for female patients versus mean = 83.8, 12.3 for male patients, p < 0.0001), but also with general, cognitive, and sleep/rest fatigue. Significant differences were noted in fatigue levels by cancer diagnosis. Participants with sarcoma (n = 11) had significantly more problems with fatigue (mean = 64.3, SD = 8.7) than those with leukemia or lymphoma (n = 15, mean = 78.2, SD = 12.8) and other cancer diagnoses (n = 9, mean = 84.6, SD = 12.8, p = 0.001). Figure 1 compares the dimensions of fatigue in patients with leukemia or lymphoma, sarcoma, and other cancer diagnoses.
The overall mean sleep duration at home was 345.03 minutes or 5.7 hours (SD = 90.61 minutes or 1.5 hours). The average number of minutes awake after sleep onset was 34.4 (SD = 20.8). On average, sleep efficiency was 92% (SD = 4%, range = 77%–98%), and sleep quantity was 85% (SD = 9%, range = 61%–98%).
Significant differences were found in duration of sleep (p < 0.001) between children and adolescents (see Table 3), with adolescents sleeping less (mean = 312, SD = 87.5) than children (mean = 380, SD = 82.4, p = 0.02). Although no significant differences were observed in number of wake minutes after sleep onset, some children were awake for more than one hour after sleep onset, and some adolescents were awake for as many as two hours after sleep onset. In addition, no significant differences were observed in sleep quantity and sleep efficiency between children and adolescents; however, about half had less than 90% in sleep efficiency.
A significant correlation was found between sleep/rest fatigue and sleep duration (r = 0.41, p = 0.01). Children and adolescents who had shorter sleep duration were more likely to have more problems with fatigue.
The current authors examined fatigue and sleep in children and adolescents at home and found that study participants experienced fatigue at home that was similar to fatigue experiences during hospitalization (Erickson et al., 2011; Palmer, Meeske, Katz, Burwinkle, & Varni, 2007; Varni et al., 2002). For example, Erickson et al. (2011) found that in 20 children and adolescents (aged 12–19 years) who completed the MFS for four weeks after chemotherapy, as many as 75% reported feeling tired sometimes, often, or almost always.
Children and adolescents with cancer had significantly more problems with sleep/rest fatigue than with general or cognitive fatigue. The fatigue scores in the current study were consistent with those reported by others (Erickson et al., 2011; Palmer et al., 2007; Varni et al., 2002). Similar to the findings of the current study, Erickson et al. (2011) also noted that the children in their study, who were completing weekly fatigue scales during the 28 days after receiving chemotherapy, reported significant problems with sleep/rest fatigue. Sleep/rest fatigue may be related to symptoms that can interrupt the sleep-rest cycle (e.g., nausea, vomiting, diarrhea, urinary frequency) (Lee, Cho, Miaskowski, & Dodd, 2004; Lee & Landis, 2003). Discomfort from pain is another factor that could explain sleep/rest fatigue (Morrow, 2007). Changes in an individual’s sleeping environment and routines, as well as noises, were previously reported to disrupt the sleep-rest cycle and contribute to sleep/rest fatigue during hospitalization (Hinds, Hockenberry, Rai, et al., 2007). However, the current authors were not able to collect information about the environment that could explain sleep/rest fatigue at home.
The cognitive fatigue scores in the current study were similar to those reported by hospitalized patients receiving chemotherapy (Erickson et al., 2011; Yeh, Man Wai, Lin, & Chiang, 2011). Children reported fewer problems with cognitive fatigue (Erickson et al., 2011). Survivors of childhood cancer have reported that fatigue and sleep problems affect cognitive function (e.g., attention, memory, thinking, reasoning) (Krull et al., 2012). However, cognitive fatigue, as measured by items on the MFS (Varni et al., 2002), is different from cognitive dysfunction, as measured by standardized neurocognitive testing (Krull et al., 2012). The current authors found very little information about cognitive fatigue in children and adolescents at home.
Although previous investigators did not find substantial differences in fatigue scores between children and adolescents with leukemia (Hinds, Hockenberry, Gattuso, et al., 2007), adolescents in the current study indicated more problems with fatigue than children. Meeske, Katz, Palmer, Burwinkle, and Varni (2004) also reported that adolescents with brain tumors or leukemia had more problems with fatigue than children. Adolescents who frequently engaged in poor sleep hygiene behaviors (e.g., keeping different sleep schedules on weekdays and weekends, engaging in stimulating activities prior to bed) may have disrupted their sleep-wake patterns (Meeske et al., 2004). Age differences may also be related to hormonal changes during puberty, greater social involvement, or greater awareness and symptom reporting (Erickson et al., 2011; Hinds, Hockenberry, Rai, et al., 2007; Meeske et al., 2004).
Female participants in the current study were found to have more problems with fatigue than male participants, which is consistent with findings by others (Meeske et al., 2004; Perdikaris et al., 2008, 2009). However, other investigators did not observe gender differences (Sanford et al., 2008; Williams et al., 2012). Future studies need to examine whether gender differences in fatigue frequency and severity are clinically meaningful (Miaskowski, 2004).
Children and adolescents with sarcoma had more problems with fatigue than those with leukemia, lymphoma, and other cancer diagnoses. Although previous studies found more problems with fatigue in pediatric patients with advanced leukemia, lymphoma, or brain tumors compared to those with solid tumors (Tomlinson et al., 2011), very little information was available about fatigue in pediatric patients with sarcoma. Previous studies combined the diagnosis of sarcoma with other types of tumors (Erickson et al., 2011; Perdikaris et al., 2008, 2009). Pediatric patients with sarcoma may have had more problems with fatigue because of bone pain, lack of activity, and impaired movement—factors that were previously noted in adults with bone cancer (Luger, Mach, Sevcik, & Mantyh, 2005).
Children and adolescents in the current study slept less than six hours (345 minutes on average) during the night, which was similar to a previous study involving hospitalized children with solid tumors or acute myeloid leukemia (Hinds, Hockenberry, Gattuso, et al., 2007). Sleep disruptions were previously reported to be associated with dexamethasone (Hinds, Hockenberry, Gattuso, et al., 2007; Vallance et al., 2010; van Litsenburg et al., 2011), a treatment that was continued at home, which could explain the shorter sleep duration. Significant correlations were found between fatigue and sleep. Those children and adolescents who had shorter sleep duration were more likely to have problems with fatigue. Gedaly-Duff et al. (2006) also found that fatigue was associated with sleep problems. Potential sleep problems at home may be attributed to disruption in sleep cycles or desynchronized sleep (Ancoli-Israel, Moore, & Jones, 2001).
Interpretation of the results of the current study should be considered in light of several limitations. The sample size was small, which restricted the power to detect statistical effects that otherwise may have been observed. Given the small number of participants with the different cancer diagnoses and reasons for hospitalization, drawing conclusions was not possible. Future studies would benefit from a larger sample size to describe the effects of person and health and illness variables on fatigue and sleep. In addition, the sample was recruited from pediatric oncology settings in the southwestern United States. Therefore, the findings may not be generalizable, and they may not be representative of fatigue experiences in other settings, which may differ by characteristics related to cancer treatment. Specific types of cancer and some treatment protocols also vary widely, which may influence fatigue levels. However, because of small sample size, analyses of these variables were not possible. The current authors used the MFS (Varni et al., 2002) to measure fatigue and the sleep actigraph to measure sleep variables. Consequently, making comparisons with other studies that used different instruments and procedures to measure fatigue and sleep was not possible.
In the current study, children and adolescents with cancer experienced fatigue and sleep problems at home. They reported more problems with sleep/rest fatigue than general or cognitive fatigue. Findings from this study support the recommendation that nurses provide information about monitoring fatigue and sleep, as well as discuss strategies that could promote sleep and rest at home. For example, exercise interventions for decreasing fatigue have been shown to be effective in a small number of children and adolescents with cancer (Baumann et al., 2013; Keats & Culos-Reed, 2008). Various nonpharmacologic interventions may also be effective in addressing cognitive and sleep/rest fatigue, particularly in children who may not be able to perform physical exercises. In addition, disease-related symptoms (e.g., pain, nausea) may influence fatigue and decrease a child’s willingness to participate in exercise interventions. Management of pain and other symptoms at home is important to discuss with families (Miller et al., 2011). Although very little information is available about effectiveness, other strategies for fatigue management include physical activity, massage therapy, and psychosocial interventions (Chang et al., 2013; Takken et al., 2009). Fatigue and sleep quality at home need to be assessed, similar to the way other symptoms (e.g., pain, nausea, vomiting) are evaluated during clinic visits (Miller et al., 2011). Future studies are needed to examine the different dimensions of fatigue with larger samples, factors that may affect fatigue and sleep, and the effectiveness of interventions for management of fatigue and sleep in children and adolescents with cancer at home.
Ancoli-Israel, S., Moore, P.J., & Jones, V. (2001). The relationship between fatigue and sleep in cancer patients: A review. European Journal of Cancer Care, 10, 245–255. doi:10.1046/j.1365-2354.2001.00263.x
Andrykowski, M.A., Donovan, K.A., Laronga, C., & Jacobsen, P.B. (2010). Prevalence, predictors, and characteristics of off-treatment fatigue in breast cancer survivors. Cancer, 116, 5740–5748. doi:10.1002/cncr.25294
Baggott, C., Dodd, M., Kennedy, C., Marina, N., & Miaskowski, C. (2009). Multiple symptoms in pediatric oncology patients: A systematic review. Journal of Pediatric Oncology Nursing, 26, 325–339. doi:10.1177/1043454209340324
Baumann, F.T., Bloch, W., & Beulertz, J. (2013). Clinical exercise interventions in pediatric oncology: A systematic review. Pediatric Research, 74, 366–374. doi:10.1038/pr.2013.123
Berger, A.M., Parker, K.P., Young-McCaughan, S., Mallory, G.A., Barsevick, A.M., Beck, S.L., . . . Hall, M. (2005). Sleep/wake disturbances in people with cancer and their caregivers: State of the science. Oncology Nursing Forum, 32, E98–E126. doi:10.1188/05.ONF.E98-E126
Bower, J.E., Ganz, P.A., Desmond, K.A., Bernaards, C., Rowland, J.H., Meyerowitz, B.E., & Belin, T.R. (2006). Fatigue in long-term breast carcinoma survivors: A longitudinal investigation. Cancer, 106, 751–758.
Braam, K.I., van der Torre, P., Takken, T., Veening, M.A., van Dulmen-den Broeder, E., & Kaspers, G.J. (2013). Physical exercise training interventions for children and young adults during and after treatment for childhood cancer. Cochrane Database of Systematic Reviews, 2013, CD008796. doi:10.1002/14651858.CD008796.pub2
Chang, C.W., Mu, P.F., Jou, S.T., Wong, T.T., & Chen, Y.C. (2013). Systematic review and meta-analysis of nonpharmacological interventions for fatigue in children and adolescents with cancer. Worldviews on Evidence-Based Nursing, 10, 208–217. doi:10.1111/wvn.12007
Clark, J., Cunningham, M., McMillan, S., Vena, C., & Parker, K. (2004). Sleep-wake disturbances in people with cancer part II: Evaluating the evidence for clinical decision making. Oncology Nursing Forum, 31, 747–771. doi:10.1188/04.ONF.747-771
Cramp, F., & Daniel, J. (2008). Exercise for the management of cancer-related fatigue in adults. Cochrane Database of Systematic Reviews, 2008, CD006145.
Dodd, M., Janson, S., Facione, N., Froelicher, E.S., Humphreys, J., Lee, K., . . . Taylor, D. (2001). Advancing the science of symptom management. Journal of Advanced Nursing, 33, 668–675.
Edwards, J.L., Gibson, F., Richardson, A., Sepion, B., & Ream, E. (2003). Fatigue in adolescents with and following a cancer diagnosis: Developing an evidence base for practice. European Journal of Cancer, 39, 2671–2680. doi:10.1016/j.ejca.2003.09.007
Erickson, J.M., Beck, S.L., Christian, B.R., Dudley, W., Hollen, P.J., Albritton, K.A., . . . Godder, K.A. (2011). Fatigue, sleep-wake disturbances, and quality of life in adolescents receiving chemotherapy. Journal of Pediatric Hematology and Oncology, 33, e17–e25. doi:10.1097/MPH.0b013e3181f46a46
Gedaly-Duff, V., Lee, K.A., Nail, L., Nicholson, H.S., & Johnson, K.P. (2006). Pain, sleep disturbance, and fatigue in children with leukemia and their parents: A pilot study. Oncology Nursing Forum, 33, 641–646. doi:10.1188/06.ONF.641-646
Gibson, F., Edwards, J., Sepion, B., & Richardson, A. (2006). Cancer-related fatigue in children and young people: Survey of healthcare professionals’ knowledge and attitudes. European Journal of Oncology Nursing, 10, 311–316. doi:10.1016/j.ejon.2005.09.010
Gibson, F., Mulhall, A.B., Richardson, A., Edwards, J.L., Ream, E., & Sepion, B.J. (2005). A phenomenologic study of fatigue in adolescents receiving treatment for cancer. Oncology Nursing Forum, 32, 651–660. doi:10.1188/05.ONF.651-660
Gibson, G.J. (2005). Obstructive sleep apnoea syndrome: Underestimated and undertreated. British Medical Bulletin, 72, 49–65. doi:10.1093/bmb/ldh044
Goedendorp, M.M., Gielissen, M.F., Verhagen, C.A., Peters, M.E., & Bleijenberg, G. (2008). Severe fatigue and related factors in cancer patients before the initiation of treatment. British Journal of Cancer, 99, 1408–1414. doi:10.1038/sj.bjc.6604739
Hertzog, M.A. (2008). Considerations in determining sample size for pilot studies. Research in Nursing and Health, 31, 180–191. doi:10.1002/nur.20247
Hinds, P.S., Hockenberry, M., Rai, S.N., Zhang, L., Razzouk, B.I., Cremer, L., . . . Rodriguez-Galindo, C. (2007). Clinical field testing of an enhanced-activity intervention in hospitalized children with cancer. Journal of Pain and Symptom Management, 33, 686–697. doi:10.1016/j.jpainsymman.2006.09.025
Hinds, P.S., Hockenberry, M., Tong, X., Rai, S.N., Gattuso, J.S., McCarthy, K., . . . Srivastava, D.K. (2007). Validity and reliability of a new instrument to measure cancer-related fatigue in adolescents. Journal of Pain and Symptom Management, 34, 607–618. doi:10.1016/j.jpainsymman.2007.01.009
Hinds, P.S., Hockenberry, M.J., Gattuso, J.S., Srivastava, D.K., Tong, X., Jones, H., . . . Pui, C.H. (2007). Dexamethasone alters sleep and fatigue in pediatric patients with acute lymphoblastic leukemia. Cancer, 110, 2321–2330. doi:10.1002.cncr.23039
Howlader, N., Noone, A.M., Krapcho, M., Garshell, J., Miller, D., Altekruse, S.F., . . . Cronin, K.A. (Eds.). (2014). SEER cancer statistics review, 1975–2011. Retrieved from http://seer.cancer.gov/archive/csr/1975_2011
Huang, T.T., & Ness, K.K. (2011). Exercise interventions in children with cancer: A review. International Journal of Pediatrics, 2011, 461512. doi:10.1155/2011/461512
Humphreys, J., Lee, K.A., Carrieri-Kohlman, V., Puntillo, K., Faucett, J., Janson, S., . . . Donesky-Cuenco, D. (2008). Theory of symptom management. In M.J. Smith & P.R. Liehr (Eds.), Middle range theory for nursing (2nd ed., pp. 145–158). New York, NY: Springer.
Jalmsell, L., Kreicbergs, U., Onelöv, E., Steineck, G., & Henter, J.I. (2006). Symptoms affecting children with malignancies during the last month of life: A nationwide follow-up. Pediatrics, 117, 1314–1320. doi:10.1016/s0084-3954(08)70519-0
Keats, M.R., & Culos-Reed, S.N. (2008). A community-based physical activity program for adolescents with cancer (project TREK): Program feasibility and preliminary findings. Journal of Pediatric Hematology/Oncology, 30, 272–280. doi:10.1097/MPH.0b013e318162c476
Krull, K.R., Sabin, N.D., Reddick, W.E., Zhu, L., Armstrong, G.T., Green, D.M., . . . Hudson, M.M. (2012). Neurocognitive function and CNS integrity in adult survivors of childhood Hodgkin lymphoma. Journal of Clinical Oncology, 30, 3618–3624. doi:10.1200/JCO.2012.42.6841
Lee, K., Cho, M., Miaskowski, C., & Dodd, M. (2004). Impaired sleep and rhythms in persons with cancer. Sleep Medicine Reviews, 8, 199–212. doi:10.1016/j.smrv.2003.10.001
Lee, K., & Landis, C.A. (2003). Priorities for sleep research during the next decade. Research in Nursing and Health, 26, 175–176. doi:10.1002/nur.10085
Luger, N.M., Mach, D.B., Sevcik, M.A., & Mantyh, P.W. (2005). Bone cancer pain: From model to mechanism to therapy. Journal of Pain and Symptom Management, 29(Suppl. 5), S32–S46. doi:10.1016/j.jpainsymman.2005.01.008
Meeske, K., Katz, E.R., Palmer, S.N., Burwinkle, T., & Varni, J.W. (2004). Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer, 101, 2116–2125. doi:10.1002/cncr.20609
Miaskowski, C. (2004). Gender differences in pain, fatigue, and depression in patients with cancer. Journal of the National Cancer Institute. Monographs, 2004, 139–143. doi:10.1093/jncimonographs/lgh024
Miller, E., Jacob, E., & Hockenberry, M.J. (2011). Nausea, pain, fatigue, and multiple symptoms in hospitalized children with cancer. Oncology Nursing Forum, 38, E382–E393. doi:10.1188/11.ONF.E382-E393
Morrow, G.R. (2007). Cancer-related fatigue: Causes, consequences, and management. Oncologist, 12(Suppl. 1), 1–3. doi:10.1634/theoncologist.12-s1-1
Murphy, H., Alexander, S., & Stone, P. (2006). Investigation of diagnostic criteria for cancer-related fatigue syndrome in patients with advanced cancer: A feasibility study. Palliative Medicine, 20, 413–418. doi:10.1191/0269216306pm1145oa
National Sleep Foundation. (2015). Children and sleep. Retrieved from http://sleepfoundation.org/sleep-topics/children-and-sleep/page/0/2
Paavonen, E.J., Almqvist, F., Tamminen, T., Moilanen, I., Piha, J., Räsänen, E., . . . Aronen, E.T. (2002). Poor sleep and psychiatric symptoms at school: An epidemiological study. European Child and Adolescent Psychiatry, 11, 10–17.
Paavonen, E.J., Fjällberg, M., Steenari, M.R., & Aronen, E.T. (2002). Actigraph placement and sleep estimation in children. Sleep, 25, 235–237.
Palmer, S.N., Meeske, K.A., Katz, E.R., Burwinkle, T.M., & Varni, J.W. (2007). The PedsQL Brain Tumor Module: Initial reliability and validity. Pediatric Blood and Cancer, 49, 287–293. doi:10.1002/pbc.21026
Perdikaris, P., Merkouris, A., Patiraki, E., Papadatou, D., Vasilatou-Kosmidis, H., & Matziou, V. (2008). Changes in children’s fatigue during the course of treatment for paediatric cancer. International Nursing Review, 55, 412–419. doi:10.1111/j.1466-7657.2008.00644.x
Perdikaris, P., Merkouris, A., Patiraki, E., Tsoumakas, K., Vasilatou-Kosmidis, E., & Matziou, V. (2009). Evaluating cancer related fatigue during treatment according to children’s, adolescents’ and parents’ perspectives in a sample of Greek young patients. European Journal of Oncology Nursing, 13, 399–408. doi:10.1016/j.ejon.2009.06.003
Pöder, U., Ljungman, G., & von Essen, L. (2010). Parents’ perceptions of their children’s cancer-related symptoms during treatment: A prospective, longitudinal study. Journal of Pain and Symptom Management, 40, 661–670. doi:10.1016/j.jpainsymman.2010.02.012
Purcell, A., Fleming, J., Bennett, S., McGuane, K., Burmeister, B., & Haines, T. (2010). A multidimensional examination of correlates of fatigue during radiotherapy. Cancer, 116, 529–537. doi:10.1002/cncr.24731
Rosen, G.M., Shor, A.C., & Geller, T.J. (2008). Sleep in children with cancer. Current Opinion in Pediatrics, 20, 676–681.
Sanford, S.D., Okuma, J.O., Pan, J., Srivastava, D.K., West, N., Farr, L., & Hinds, P.S. (2008). Gender differences in sleep, fatigue, and daytime activity in a pediatric oncology sample receiving dexamethasone. Journal of Pediatric Psychology, 33, 298–306. doi:10.1093/jpepsy/jsm110
Sateia, M.J., & Lang, B.J. (2008). Sleep and cancer: Recent developments. Current Oncology Reports, 10, 309–318. doi:10.1007/s11912-008-0049-0
Takken, T., van der Torre, P., Zwerink, M., Hulzebos, E.H., Bierings, M., Helders, P.J., & van der Net, J. (2009). Development, feasibility and efficacy of a community-based exercise training program in pediatric cancer survivors. Psycho-Oncology, 18, 440–448. doi:10.1002/pon.1484
Teunissen, S.C., Wesker, W., Kruitwagen, C., de Haes, H.C., Voest, E.E., & de Graeff, A. (2007). Symptom prevalence in patients with incurable cancer: A systematic review. Journal of Pain and Symptom Management, 34, 94–104. doi:10.1016/j.jpainsymman.2006.10.015
Theunissen, J.M., Hoogerbrugge, P.M., van Achterberg, T., Prins, J.B., Vernooij-Dassen, M.J., & van den Ende, C.H. (2007). Symptoms in the palliative phase of children with cancer. Pediatric Blood and Cancer, 49, 160–165. doi:10.1002/pbc.21042
Tomlinson, D., Hinds, P.S., Bartels, U., Hendershot, E., & Sung, L. (2011). Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure. Journal of Clinical Oncology, 29, 639–645. doi:10.1200/JCO.2010.31.4047
Ullrich, C.K., Dussel, V., Hilden, J.M., Sheaffer, J.W., Moore, C.L., Berde, C.B., & Wolfe, J. (2010). Fatigue in children with cancer at the end of life. Journal of Pain and Symptom Management, 40, 483–494. doi:10.1016/j.jpainsymman.2010.02.020
Vallance, K., Liu, W., Mandrell, B.N., Panetta, J.C., Gattuso, J.S., Hockenberry, M., . . . Hinds, P.S. (2010). Mechanisms of dexamethasone-induced disturbed sleep and fatigue in paediatric patients receiving treatment for ALL. European Journal of Cancer, 46, 1848–1855. doi:10.1016/j.ejca.2010.03.026
Van Cleve, L., Muñoz, C.E., Savedra, M., Riggs, M., Bossert, E., Grant, M., & Adlard, K. (2012). Symptoms in children with advanced cancer: Child and nurse reports. Cancer Nursing, 35, 115–125. doi:10.1097/NCC.0b013e31821aedba
van Litsenburg, R.R., Huisman, J., Hoogerbrugge, P.M., Egeler, R.M., Kaspers, G.J., & Gemke, R.J. (2011). Impaired sleep affects quality of life in children during maintenance treatment for acute lymphoblastic leukemia: An exploratory study. Health and Quality of Life Outcomes, 9, 25. doi:10.1186/1477-7525-9-25
Varni, J.W., Burwinkle, T.M., Katz, E.R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94, 2090–2106. doi:10.1002/cncr.10428
Varni, J.W., Burwinkle, T.M., & Szer, I.S. (2004). The PedsQL Multidimensional Fatigue Scale in pediatric rheumatology: Reliability and validity. Journal of Rheumatology, 31, 2494–2500.
Vena, C., Parker, K., Cunningham, M., Clark, J., & McMillan, S. (2004). Sleep-wake disturbances in people with cancer part I: An overview of sleep, sleep regulation, and effects of disease and treatment. Oncology Nursing Forum, 31, 735–746. doi:10.1188/04.ONF.735-746
Walker, A.J., Gedaly-Duff, V., Miaskowski, C., & Nail, L. (2010). Differences in symptom occurrence, frequency, intensity, and distress in adolescents prior to and one week after the administration of chemotherapy. Journal of Pediatric Oncology Nursing, 27, 259–265. doi:10.1177/1043454210365150
Walker, A.J., Johnson, K.P., Miaskowski, C., Lee, K.A., & Gedaly-Duff, V. (2010). Sleep quality and sleep hygiene behaviors of adolescents during chemotherapy. Journal of Clinical Sleep Medicine, 6, 439–444.
Williams, P.D., Williams, A.R., Kelly, K.P., Dobos, C., Gieseking, A., Connor, R., . . . Del Favero, D. (2012). A symptom checklist for children with cancer: The Therapy-Related Symptom Checklist–Children. Cancer Nursing, 35, 89–98. doi:10.1097/NCC.0b013e31821a51f6
Yeh, C.H., Man Wai, J.P., Lin, U.S., & Chiang, Y.C. (2011). A pilot study to examine the feasibility and effects of a home-based aerobic program on reducing fatigue in children with acute lymphoblastic leukemia. Cancer Nursing, 34, 3–12. doi:10.1097/NCC.0b013e3181e4553c
Yeh, C.H., Wang, C.H., Chiang, Y.C., Lin, L., & Chien, L.C. (2009). Assessment of symptoms reported by 10- to 18-year-old cancer patients in Taiwan. Journal of Pain and Symptom Management, 38, 738–746. doi:10.1016/j.jpainsymman.2009.04.023
Michelle Darezzo Rodrigues Nunes, PhD, RN, is an associate professor in the School of Nursing at Rio de Janeiro State University in Brazil; Eufemia Jacob, PhD, RN, is an associate professor in the School of Nursing at the University of California, Los Angeles (UCLA); Kathleen Adlard, MN, RN, CPON®, CCNS, is a clinical nurse specialist at the Children’s Hospital of Orange County in Orange, CA; Rita Secola, PhD, RN, CPON®, is the patient care services director at Children’s Hospital Los Angeles; and Lucila Castanheira Nascimento, PhD, RN, is an associate professor in the College of Nursing at the University of São Paulo in Ribeirão Preto, Brazil. The study was funded by Sigma Theta Tau International’s Nu Xi At-Large Chapter, Alex’s Lemonade Stand Foundation, a grant from the UCLA Center for Vulnerable Populations Research/National Institute of Nursing Research (No. P30NR005041), and grants from the São Paulo Research Foundation (Nos. 2010/20055-6, 2012/00091-3). Nunes can be reached at firstname.lastname@example.org, with copy to editor at ONFEditor@ons.org. (Submitted March 2014. Accepted for publication August 4, 2014.)