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Cancer Nursing:
doi: 10.1097/NCC.0b013e3182207a2a
Articles: Online Only

Review of Symptom Experiences in Children and Adolescents With Cancer

Kestler, Susan A. MSN, RN, NEA, BC; LoBiondo-Wood, Geri PhD, RN, FAAN

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Author Information

Author Affiliations: University of Texas Health Science Center Houston, School of Nursing (Ms Kestler), and MD Anderson Cancer Center, Houston, Texas (Dr Lobiondo-Wood).

The authors have no funding or conflicts of interest to disclose.

Correspondence: Susan A. Kestler, MSN, RN, NEA, BC, University of Texas Health Science Center Houston, School of Nursing, 6901 Bertner, Houston, TX 77030 (susankestler@gmail.com).

Accepted for publication April 15, 2011.

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Abstract

Background: Inadequate symptom relief in children and adolescents with cancer leads to unnecessary suffering. This review assesses research on children and adolescents with cancer that had been published from 2002 to 2010.

Objectives: The review identifies the symptom experiences of children and adolescents undergoing treatment and describes the progress that has been made since Docherty’s 2003 systematic review of nurse researcher published studies from 1990 to 2002, which identified gaps in research on the symptoms of pediatric oncology patients.

Method: A computerized search of medical and nursing literature produced 50 published studies and 2 dissertations that addressed the symptom experiences of children and adolescents receiving treatment for cancer.

Results: Pain from cancer-related procedures and fatigue were the most frequently identified symptoms, followed closely by nausea and vomiting. More preschool-aged subjects and nonwhite subjects need to be assessed, distinctions between age groups and gender should be explored, and instrumentation for the prereading group must be developed.

Conclusions: Research on symptoms experienced by children and adolescents has gained momentum within the last 10 years, and some of the gaps identified by Docherty have been addressed. Multicenter trials would increase sample sizes and decrease enrollment time.

Implications for Practice: By synthesizing research completed from 2002 to 2010 on symptoms of children who had cancer, new ideas can be generated and shared with clinical nursing staff to improve patient care. Gaps to further direct research are also identified.

Although the incidence of cancer in persons younger than 21 years has been increasing since 1975, improved treatments and outcomes have resulted in steadily declining mortality.1 The goal of cancer treatment in children is frequently curative, and symptom distress is often ignored in an effort to provide the most effective approach.2 Yet inadequate symptom relief leads to unnecessary suffering. Pain, fatigue, mucositis, nausea, vomiting, and other symptoms are still commonly experienced by children because of the disease or because of the difficult treatments and procedures.

In a comprehensive systematic review of 33 studies published by nurse researchers from 1990 to 2002 that used quantitative, qualitative, or mixed research methods, Docherty3 identified several gaps in symptom distress research for children with cancer: Few studies focused on preschool-aged children; gender, ethnicity, and socioeconomic status were not usually considered in the analyses; few studies used a longitudinal design, still fewer were qualitative studies; and the use of conceptual models or of instruments designed exclusively for children or adolescents was limited. The current review identifies studies conducted by medical, nursing, and social science researchers and published between 2002 and 2010 on the symptom experiences of children and adolescents treated for cancer and discusses the progress that has been made to address the research gaps identified by Docherty.

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Search Strategy

For the current review, a search strategy was developed to identify published studies and unpublished dissertations that described and analyzed the symptom experience of children with cancer. A professional medical librarian assisted in searching the electronic databases PubMed, CINAHL, Cochrane, PsychLIT, ProQuest, and Scopus for studies published or dissertations written between 2002 and 2010. Keyword MeSH terms were child, adolescents, signs and symptoms, and neoplasm. Other search terms used were treatment distress, fatigue, nausea and vomiting, pain, mucositis, nutritional concerns, cough, fever, constipation, sleep disturbances, and emotional responses in combination with children and cancer. Using these search terms, a total of 2358 sources of potential interest were found. Of these, 2235 were eliminated for not meeting inclusion criteria (Table 1); 52 were duplicates, and 19 failed to clearly meet all the inclusion criteria. Fifty-two studies remained for use in this review.

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Results

The studies identified were conducted in the United States, Canada, the United Kingdom, Sweden, Germany, Turkey, Iran, Jordan, Taiwan, and Australia. The studies included children and adolescents of all ages, but the age range was highly variable between studies. In studies that focused on adolescents, the minimum age range fluctuated between 10 and 16 years, and the maximum from 15 to 21 years. Some studies with wider age ranges, such as preschool through adolescents, grouped the results by growth and development stages rather than by age. Children with cancer, family members, or the involved physicians and nurses were the study respondents. Twenty-four studies focused on the children’s perspective only; 17 of both the children and parents; 8 of the children, parents, and healthcare providers; and 1 study each of children and healthcare providers, parents and healthcare providers, and nurses only. Seven studies used mixed methodology, 13 were qualitative, and 32 were quantitative studies. Such variation in age range, respondent type, and methodology between the studies limits comparisons. However, all of the studies shared the aim of defining and characterizing the physical symptom experiences of children with cancer. The findings of this systematic review of these 52 studies are discussed according to symptom (Table 2).

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Pain

Whether from the cancer or the treatments and procedures, pain was the most often identified and effectively treated symptom in 8 studies. The studies involved children’s and parents’ perceptions, although one compared family perceptions with those of the healthcare providers.9 Cancer patients can experience pain from many causes. Cancer itself, as it progresses, causes pain. Chemotherapy, lumbar punctures, accessing intravenous sites, the immediate postoperative period, and phantom pain from amputations are but a few causes of cancer pain.

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TREATMENTS AND PROCEDURES

A study by Ljungman and colleagues8 reported information from questionnaires and interviews of Swedish children undergoing cancer treatment, their parents, and professionals and found that treatment-related pain was more significant than procedure or pain from the disease. However, healthcare professionals considered treatment-related pain as more frequent than the children or parents. Professionals also thought that ineffective strategies to relieve pain were more likely to be associated with psychological causes (eg, high levels of anxiety, loneliness, and lack of preparation) rather than with physiological causes. Professionals and parents agreed that self-report in children as young as 4 years of age was feasible; in lieu of self-report, parents were better at ascertaining their child’s pain than professionals.

Spagrud and colleagues9 in 2008 found little difference between port and peripheral access in terms of child coping, child distress, or parent and nurse perceptions of the child’s pain. The Faces Pain Scale58 was scored independently before and after blood sampling. Conversations between parent and child were audiotaped for 2 minutes before and 1 minute after the needle insertion. Children’s pain ratings were similar in the port and peripheral groups, even though the children with ports received a topical anesthetic before insertion. Parent reassurance and understanding had the greatest effect on allaying a child’s distress (r = −0.276).

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INTENSITY

Van Cleve and colleagues10 found that the highest mean pain intensity ratings in children with acute lymphoblastic leukemia were directly related to the disease process and diagnostic treatment or procedures. Children indicated that the most frequent sites were the legs, abdomen, head and neck, and back. Each child was interviewed 7 times (within 2 weeks of diagnosis and at the end of each treatment phase). The Poker Chip Tool59 for children 4 to 7 years old and the Adolescent Pediatric Pain Assessment Tool60 for children 8 to 17 years old were used to measure pain intensity. Children indicated that pain peaked in the morning and decreased throughout the day with a likewise pattern from beginning to end of the week. Acetaminophen was the most commonly used analgesia followed by acetaminophen with codeine. Latino children reported less effective pain management than white children, but both younger and older children irrespective of ethnicity indicated less intense pain after analgesia. Common words to describe pain were “achy” followed by “uncomfortable” or “annoying,” and “comes and goes.”

A study in Jordan captured children’s pain prevalence using chart reviews and parent and child interviews over the course of 2 days.4 Researchers found that 17 of 35 patients reported pain, with 4 children having severe pain. In addition, only 7 of 20 children who complained of pain on the survey day received analgesia; of the 7 who did, 6 were in the severe pain group. Part 2 of the Jordanian study involved interviewing parents about pain management. Six themes were revealed that reflected the culture’s paradigm. Parents believed that pain in their children should be managed, that children are responsible for expressing their pain, that pain was the will of God, and that the parent’s presence helped to attenuate their child’s pain. In addition, the parents’ psychological pain of having a child diagnosed with cancer was the worst pain the parent had ever experienced, and the father and physician should collaborate in medical decision making.

Friedrichsdorf et al5 interviewed children in Australia who experienced severe oncologic pain from treatments and observed that pain related to treatments or its complications was more frequent than pain related directly to the cancer or postoperative pain at the tumor site. More than half the children in this study experienced at least 1 episode of breakthrough pain in the preceding 24 hours. Younger children were more likely to experience breakthrough pain than adolescents (83% vs 38%, P ≤ .025). Gender was not significantly correlated, nor was the incidence of breakthrough pain with anxiety or depression. Children commonly characterized the pain as “sharp” and “shooting,” possibly indicating a neuropathic component. Because breakthrough pain lasted only seconds to minutes, oral opioids were not as efficient as patient-controlled opioid boluses via an intravenous line.

Zernikow et al11 used what was described as a full epidemiological analysis to assess the pain experience in German children with cancer, surveyed weekly for 4 weeks. At the end of the each week, more children were able to recall increasing levels of pain, with 15%, 28%, 50%, and 58% of the children able to recall at least 1 episode of disease-related severe pain. This was a consistent significant increase in severe pain (P = .001). At each survey period in the 4 weeks, 90% of the children experienced treatment-related pain with the mean pain intensity of 6.7 (numeric rating scale [NRS], 0–10). To reduce severe to maximal pain during bone marrow aspiration, general anesthesia was the only strategy that significantly reduced the number of children suffering (P < .01). One noteworthy finding was that, across age groups, answers compared between parent and child and found to be equivalent.

In a study by Jacob et al,6 which aimed to describe the location, intensity, and quality of pain; pain medications; amount of pain relief; and perceptions of sleep and activity during hospitalization in children and adolescents with cancer, more than half of the subjects had indicated they had pain, with a third reporting moderate to severe pain. Data were collected daily for 5 days beginning with the day of admission. Authors found that the most severe pain occurred on the admission day and that most patients reported good relief after receiving analgesia. Within the sample of 49, no correlation was found between pain intensity, sleep, or activity scores.

Jacob and colleagues7 published a study the following year to describe intensity, location, and quality of pain among 44 Spanish-speaking children with cancer. Of the 13 who reported moderate to severe pain, no significant difference in mean pain intensity by gender, age (7–9 vs 10–12 years), or treatment site (inpatient vs outpatient) was found. An assessment for pain location revealed that the most common sites were the abdomen (53.8%), lower back (46.2%), and upper chest (30.8%). Girls marked significantly more body areas than boys (P = .05), subjects with lymphoma marked more than those with leukemia or sarcomas (P = .05), and subjects with respiratory symptoms (eg, runny nose, cough) marked more than those with general symptoms (fever, headaches) or gastrointestinal symptoms (P < .001). Three of the 5 children who reported mild pain intensity also reported receiving analgesia within the previous week. However, among those who reported moderate to severe pain (n = 13), only 2 reported receiving pain medication. In addition to the usual barriers clinicians encounter when assessing children’s pain, additional challenges exist with those whose primary language is not the language commonly spoken in the healthcare setting or whose culture is different. Similar to other reports, commonly chosen words to describe pain were “aching,” “annoying,” and “awful,” not words indicating a neuropathic origin to the pain and therefore amenable to pain analgesia.

The results from these studies add to the knowledge of how children and adolescents with cancer encounter, perceive, and manage pain. Although the foci of this body of pain research were highly variable, the results demonstrated some agreement across the studies. Treatment- or procedure-related pain was frequently cited as the most bothersome,5,8 support for parent proxy was found as 2 studies reported parent-child agreement,8,11 and a proportion of children with cancer experience severe pain,6,7,11 with findings of undertreatment occurring in 3 children.4,7,10

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Fatigue

Fatigue is a common cancer symptom and has received much attention in adults with cancer. Since 2002, research focusing on fatigue in children with cancer has accelerated. Nineteen studies whose findings highlighted fatigue in children were used in this review. Four were qualitative, 12 were quantitative, and 3 used mixed methods. Fatigue is a complex phenomenon that can significantly affect the quality of a child’s life during treatment and long after the child has moved into the survival stage.

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THEMES

In a qualitative study, Davies et al14 investigated fatigue from the perspective of energy management with parents and their children with leukemia or lymphoma and categorized fatigue into 3 levels of energy: typical tiredness, treatment fatigue, and shutdown fatigue. The boundaries between these levels were fluid, and the children described vacillating from one level to another as their energy level waxed and waned. Both children and parents were able to identify precursors of fatigue, behavioral signs, and replenishing, conserving, and preserving energy. Replenishing methods addressed typical tiredness and treatment fatigue and involved napping, hot baths, distraction, and relaxation techniques. As treatment fatigue became more prolonged, conserving strategies were put into place that involved decreasing energy expenditures. Tactics such as increased sleeping, wanting only familiar people around, and wanting time alone were frequently used. With enough time and effective conservation, treatment fatigue could be resolved. In shutdown fatigue, strategies used previously did not work. The child began to be introspective, passive, and withdrawn and ignored people in an effort to preserve energy.

In 2003, using one-to-one interviews, a focus group design, and a structured diary, Edwards et al15 studied 4 adolescents between 16 and 19 years old. The authors approached 27 adolescents before identifying 4 who agreed to participate; these 4 adolescents were in remission for 5 or more years. The study’s objectives were to investigate the utility of focus group interviews in the adolescent population and explore concepts and aspects of fatigue in those currently in treatment for cancer, those out of treatment 1 to 2 years and more than 5 years, and those who had not had cancer. Nine themes were identified, which emphasized how fatigue continued to be a highly personal and subjective symptom for adolescents with cancer long after treatment was completed. The themes addressed the difficulty of articulating the experience of fatigue, identification of multifactorial aspects of psychological and social components, the association of feelings of anger and frustration with needing to rest and not wanting to, the experience of an overwhelming drive to sleep, and the use of various creative activities (from sports to relaxation) to manage fatigue. Although the original focus of interviewing those with and without cancer did not succeed, the authors were able to surmise that the use of focus groups in adolescents for data collection is a viable research method.

Hicks and colleagues19 conducted individual interviews with children and adolescents (n = 13) with acute lymphoblastic leukemia and identified 5 symptom themes (Table 2). Of these, fatigue was the most prevalent; it appeared in 34 significant statements during the course of the interviews. Of all the physical symptoms children and adolescents experienced in these 3 studies,14,15,19 fatigue seemed to have the greatest impact on the quality of life in terms of energy levels and the ability to resume previous activities.

Gibson et al18 studied fatigue in children and adolescents who were diagnosed with cancer at least 6 months previously, from the parents’ and healthcare professionals’ prospective. Although both groups listed fatigue as the least prevalent or intense of all cancer-related symptoms, 56% felt that a moderate level of fatigue was a common experience for children with cancer, occurring at least weekly, and therefore was a significant health problem. Ream and colleagues26 also found that fatigue is a significant problem that lasts long after treatment is concluded. They conducted an exploratory mixed-methods study of the impact of fatigue in adolescents (n = 22) during and after treatment for cancer. Using semistructured individual interviews and diary entries that included a numerical rating scale (0–10), fatigue was reported to be a significant problem irrespective of the length of time since treatment (on treatment, 1–2 years off treatment, or >5 years off treatment), and quality of life continued to be compromised long after treatment had been completed. Fatigue was a greater problem for those on treatment, who when fatigue was at its worst had a mean score of 7 (SD, 2.37) on the NRS. In comparison, those in recent remission had a mean score of 4.6 (SD, 2.41) and a score of 5.1 (SD, 3.31) in those over 5 years after treatment. Adolescents on treatment and those in recent remission reported that, as energy levels rose, frustration and distress diminished. This improvement was not sustained, as the group at 5 years posttreatment scored more poorly in fatigue and distress. With respect to disruption of daily activities, those in the recent remission group reported higher scores in all activities, except walking upstairs, than the long-term remission group. Difficulty with staying up all day without napping and disruption to sports participation seemed to continue 5 or more years after treatment. Of note in the off-treatment groups, there was great variability in energy levels and fatigue intensity as some adolescents were able to resume activity levels of their lives previous to cancer.

In the most recent study of fatigue in adolescents receiving chemotherapy, results supported previous research.18,19 However, unlike previous studies, adolescents self-reported aspects of fatigue daily for 28 days during therapy.16 Most of the subjects completed the daily assessments with minimal data missing, which demonstrates that, even on treatment, adolescents are willing to participate in research. Every adolescent experienced fatigue during the month of therapy, but with variability in severity and duration between and among individuals. Everyone experienced peak fatigue levels 2 to 4 days following chemotherapy. The group that received chemotherapy in 3- to 4-week cycles described fatigue as steadily declining peaks of severity. The group who received chemotherapy weekly had more frequent swings of fatigue much like a “yo-yo,” with peaks of severity remaining similar in intensity throughout the 28 days. As fatigue increased, most of the adolescents reported they missed schoolwork, family, and social activities. They also described themselves as irritable, angry, unhappy, and upset when fatigue was at its peak. Sleep issues were frequently connected to fatigue, particularly difficulty falling asleep and nighttime awakenings. Although the hospital environment adds to nighttime awakenings, sleep disturbances were also common at home. The adolescents reported that pain and nausea occurred with fatigue. The authors surmise that pain interrupts sleep, which leads to fatigue. Fatigue with nausea may be due to inadequate hydration and nutrition. Clustering with fatigue, sleep disruptions and pain were found in adults with cancer. Further research into clusters with fatigue is needed to adequately assess and effectively intervene for successful symptom management.

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MEASURES

The desire to identify and test psychometric properties of a fatigue scale for children and adolescents with cancer led to the development of 3 instruments by Hockenberry et al23: a Childhood Fatigue Scale, a Parent Fatigue Scale, and a Staff Fatigue Scale, all of which underwent successful psychometric testing. The results from that study supported previous research in which children perceived treatment to be the primary cause of their fatigue. Three dimensions were noted from the Childhood Fatigue Scale: lack of energy, unable to function, and altered mood. Unlike adolescents, younger children were unaware that cognition and emotions change when experiencing fatigue. In 2010, Hinds and colleagues20 renamed the Childhood Fatigue Scale and published a revision to the Fatigue Scale–Child by reducing the number of items to 10 and identifying a cutoff score of 12 for those with severe cancer-related fatigue in need of clinical intervention. In total, 73 of the 221 (33%) children in the study scored 12 or higher. Repeated measures demonstrated that fatigue scores 12 or greater increased with the duration of therapy and hospital stays, supporting the conclusion that fatigue is one of the most debilitating symptoms in hospitalized children with cancer. Perdikaris and colleagues25 studied school-aged children in an outpatient pediatric oncology clinic in Greece. Children completed the Childhood Fatigue Scale23 3 times: at the beginning defined as after the biopsy and at the start of treatment protocol, the middle defined as the start of the first or second round of chemotherapy depending on the protocol, and the end defined as the last treatment received. Researchers found fatigue scores on the Childhood Fatigue Scale significantly increased during treatment (F = 6.846, P = .003) and that girls reported higher fatigue scores than boys (F = 4.857, P = .034). This study did not support changes in fatigue scores due to anemia or relapse (P > .5 at each measurement).

The Adolescent Fatigue Scale published in 2007 by Hinds et al22 used data gathered from previous focus groups, a literature review, and the concepts from models established in 1999. Sixty-four adolescents with cancer were evaluated in 4 different studies. They found that levels of fatigue discriminated between anemic and nonanemic adolescents (P < .01) and that the intensity changed over time (t = 2.55, P < .01). Through exploratory factor analysis, 4 factors: cognitive and physical weariness, added effort and assistance to do the usual, needing rest and feeling angry, and avoiding social activities, were identified. Similar to previous findings in child fatigue instruments, adolescent-to-parent correlations were significant (r = 0.4467, P < .0001).

Sanford and colleagues29 investigated gender differences in sleep, fatigue, and daytime activity in children and adolescents receiving dexamethasone to treat leukemia. This report was part of a larger study conducted to investigate the affect of dexamethasone on fatigue and sleep in children and adolescents receiving treatment for leukemia. Using wrist actigraphy, gender differences were noted in the number of nighttime awakenings, awake time after falling asleep, and the number and length of daytime naps in the Children’s Oncology Group (COG) standard-risk group compared with 3 other treatment groups. While on treatment, boys awakened more often at night and stayed awake longer after sleep onset than girls. There was no difference in daytime activity levels between boys and girls; however, girls took more naps and slept longer during the naps than did boys across treatment weeks. Because of small sample sizes in the treatment groups, power was insufficient, and no statistical analysis was completed on fatigue scores. In a follow-up study published by Hinds et al,61 4 treatment groups of patients with low-risk to standard-risk acute lymphoblastic leukemia were evaluated to determine the effect of dexamethasone exposure on fatigue and sleep. Dexamethasone was related to significant increases in fatigue in 3 of the 4 groups. In every risk group, parents reported an increase in their child’s fatigue while on dexamethasone.

In 2 separate publications12,13 Chiang et al developed and tested Chinese versions of the Fatigue Scale–Child23 and the Fatigue Scale–Adolescent.22 Like Perdikaris et al,25 the Fatigue Scale in Taiwanese children reported no significant differences in fatigue between groups of anemic and nonanemic children with cancer and between those on treatment and those who completed treatment. The Fatigue Scale–Child–Chinese demonstrated acceptable semantic, conceptual, and normative equivalence to the English version for measuring fatigue in children with cancer. However, 1 item, “I have trouble thinking,” did not meet a priori standards for item-to-total scale correlation in the Altered Mood Subscale and in confirmatory factor analysis, suggesting that this item might not be appropriate for Taiwanese children with cancer. Translation and psychometric testing for the Fatigue Scale–Adolescent in Chinese reported different results.13 In a study of 51 Taiwanese adolescents with cancer, anemic adolescents reported statistically significant higher fatigue scores than those without anemia (z = −1.68, P = .048). Higher fatigue scores were also significantly correlated with scores on a depression subscale scale of the Child Behavior Checklist.62 Adolescents in Taiwan reported higher scores on “I sleep more often” and “My body hasn’t kept up with others” but lower scores on “I have felt angry” than their American counterparts. Further study in how children and adolescents from different cultures perceive symptoms needs to continue.

Findings continue to support the relationship between corticosteroids such as dexamethasone and fatigue, and hemoglobin and fatigue. A study that examined clinical factors associated with fatigue in pediatric and adolescent oncology patients and their parents was conducted by Yeh and colleagues32 in 2008. Using the PedsQL Multidimensional Fatigue Scale63 for self-report and the Fatigue Scale–Parent,23 data were collected the day before the start of a new round of chemotherapy, 24 hours after, and then daily for the next 9 days for 11 data points. Fatigue was greatest in the first 5 days of chemotherapy. Corticosteroids and hemoglobin values were significantly correlated (P < .001), with increases in fatigue during those 5 days if the child was taking steroids on consecutive days. Parent reports of their child’s fatigue were similar to the child’s self-report, although with 2 different instruments, it is difficult to identify the extent of correlation.

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INDICATORS AND INTERVENTIONS

Hinds and colleagues21 found that children and adolescents with cancer who were awakened during the night by parents and staff entering and exiting the room had significantly higher fatigue scores (F = 5.71, P = .027). If another person slept in the child’s room at night, the children awakened less often and slept better. Zupanec and colleagues33 found very similar results in a study of children and parents regarding sleep habits and fatigue in children receiving chemotherapy for leukemia. Sleeping with someone at night, using routines, comforting activities, and having food and drink before bedtimes were strategies that helped children achieve a restful night’s sleep. Fatigue and sleep disturbance scores were both significantly correlated (P < .0001) for children and parents; however, no relationship was found between the amount of nighttime sleep and the child’s fatigue scores.

Genc and Conk17 published a case-control study of Turkish children who were receiving chemotherapy for the first time and identified nursing interventions that significantly reduced the sense of fatigue in the children (t = 5.25, P < .001) as well as their mothers (t = 5.67, P < .001). Effective interventions such as taking naps, participating in fun activities, having frequent visitors, going for walks, and eating balanced meals were identified. Also in 2008, Whitsett and colleagues30 published a repeated-measures study that explored the relationship between chemotherapy-related fatigue in children and adolescents with cancer (n = 12) and depression and hemoglobin levels. Parents were also interviewed for signs of indicators of fatigue in their children and strategies used to alleviate it. Nine data points were collected across 3 chemotherapy cycles. Each child completed the Center for Epidemiological Studies for Depression Scale64 and either the Childhood Cancer Fatigue Scale23 or the Fatigue Scale–Adolescent,22 and parents participated in a semistructured interview at each data point. One-third of the children rated themselves as experiencing little to no fatigue, but their parents described their children as having more intense fatigue. When the children rated themselves as very fatigued, there was more agreement between parent and child. Analysis of parent interviews identified 6 specific descriptions of behaviors that distinguished children from high and low fatigue levels. Highly fatigued children were more likely to be tired, have dark circles beneath their eyes, or to be nauseated/vomiting, sleepy, sad, less active, and more irritable than when they were not as fatigued. The researchers grouped the fatigue indicators into 3 categories: body language, levels of activity, and emotions/mood, which are similar to the categories identified by Hockenberry et al23 in 2003. Parents identified strategies such as food, napping, reducing activity or encouraging activity, talking, giving space, massaging, or warm baths. Most of the strategies were recommended by parents whose children were severely fatigued. Depression scores were positively correlated with fatigue scores (r = 0.593, P < .01); however, hemoglobin was so tightly monitored and regulated with transfusion therapy that the researchers decided not to analyze that data.

Research on fatigue assessment and management among children and adolescents with cancer is still in a developing phase. Fatigue is a debilitating symptom, and only a few strategies have been identified that could attenuate its incidence.17,21,30,33 Parents were able to identify signs of fatigue exhibited by their children via body language, an increase in complaints of pain or discomfort, nausea and vomiting, lethargy, or an increased need for sleep and altered mood.22,23,30 The findings from these studies were similar to those from studies in adults with cancer,65,66 specifically diminished levels of energy, intense sense of tiredness, and an overwhelming need for sleep. Continued identification of causative factors and effective interventions for fatigue need further exploration.

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Nausea and Vomiting

Only 4 studies published between 2002 and 2010 that involved children and adolescents with cancer focused on nausea and vomiting. In 1995, Holdsworth and colleagues67 developed a nausea/emesis survey tool to assess characteristics of nausea and vomiting, interference in daily activities, and appetite. This survey was used in a publication in 2006 to characterize the effectiveness of standard antiemetic therapy in children receiving emetogenic chemotherapy.35 Complete protection by intravenously administered ondansetron for moderately emetogenic chemotherapy in both acute and delayed phases of nausea and vomiting was more likely in children 3 years or younger than older children (83.1% vs 61.9%, P = .032). Less than half the older children achieved complete control when receiving severely emetogenic chemotherapy. Regardless of age or gender, achievement of complete protection in the acute phase was related to continued complete protection in the delayed phase. Severity and duration of nausea and vomiting varied between different chemotherapeutic regimens. This was one of the first studies to evaluate the effectiveness of an antiemetic regimen in the administration of emetogenic chemotherapy in children with cancer.

It was not until 2006 that research on a nausea instrument for children was published.36 The Pediatric Nausea Assessment Tool (PeNAT), designed for children 4 years or older, was adapted from a previously validated cartoon facial expression pain scale.68 The PeNAT is a series of 4 cartoon faces from a happy smiling face (“no nausea”) to a frowning sad face (“worst nausea”) and standard scripts for the interviewer to use with the children. In initial testing, parents of some of the children were asked to rate their child’s nausea and pain immediately before PeNAT administration, using a 10-cm visual analog scale with anchors of “no nausea” to “worst nausea,” and the 5-point National Cancer Institute’s Nausea Vomiting Severity Scale (NCI-NV). The tool was tested with 177 children categorized into 4 groups: those receiving chemotherapy, those receiving chemotherapy before stem cell transplantation, those with cancer but not receiving chemotherapy, and those without cancer but hospitalized. Reliability was established comparing scores between the group receiving chemotherapy and those preparing for stem cell transplantation (Table 2). Correlations were stronger in the group preparing for stem cell transplantation (Spearman ρ = 0.847 vs 0.593, P < .001) than the group receiving only chemotherapy. Construct validity was identified when median scores in all 4 groups were compared, and a significant difference was found (P = .035). Criterion-related validity and convergent and discriminant validity confirmed the PeNAT as a psychometrically sound instrument for evaluating nausea in children 4 years or older. Since that time, no other instrument designed for children and adolescents addressing only nausea or vomiting has been published in peer-reviewed journals.

Acupuncture as an intervention to control chemotherapy-induced nausea and vomiting was studied by Reindl et al37 in a randomized, multicenter, prospective crossover trial in Germany. Power calculation required 35 patients for the study, but an interim analysis was performed on 11 accrued children and adolescents. The patients were randomly allocated to receive antiemetic medication alone or with acupuncture. Acupuncture was started 1 day before chemotherapy begun and then offered each day during the course of administration. It was offered on alternating courses of chemotherapy for the first 3 courses; thereafter, the patient decided whether to continue with the acupuncture treatments. The numbers of doses of antiemetics, both scheduled and administered as needed, were counted. Of the 11 children, 2 died of progressive disease by the second course, 1 child was lost to follow-up, 1 opted to discontinue acupuncture because the needles were too uncomfortable, and 2 children decided to undergo only the standard procedure. Five children decided to continue acupuncture after 3 courses, and 4 with every chemotherapy course. Between a subject’s first course with acupuncture and the course without acupuncture, there was no significant difference in the number of doses of antiemetic medication administered (P = .074), although additional medication was reduced for subsequent courses with acupuncture (P = .024). However, episodes of vomiting were not significantly different with or without acupuncture (P = .374).

With the intention of studying adolescents with cancer using tools to assess nausea and vomiting among adults with cancer, Baker and Ellett34 recruited a convenience sample (n = 10) of adolescents admitted to the hospital for chemotherapy administration. The adolescents were asked to complete 3 instruments previously shown to have strong reliability and validity among adults. The visual analog Thermometer Scale69 was used to assess current nausea and the Rhodes Index for Nausea, Vomiting, and Retching70 to measure nausea, vomiting, retching, and distress. These instruments were administered before chemotherapy began and every 12 hours on 6 occasions or until a return to baseline was observed. The third instrument administered only at the final assessment, the Morrow Assessment of Nausea and Emesis,41 measured specific characteristics of nausea and vomiting, including anticipatory nausea and vomiting, and response to interventions. Of the 10 adolescents, 4 had anticipatory nausea, and 2 had anticipatory vomiting. Nine of the 10 experienced nausea during treatment, but only 3 experienced vomiting. Of the 9 who reported nausea, most described it as mild or moderate in severity, although 2 found their nausea to be severe. Only 1 adolescent reported no nausea or vomiting. A cautionary note by the researchers was that obtaining useful information from adolescents about nausea and vomiting required patience and detailed analysis of the results of all 3 instruments. The researchers found that compliance with completing the instruments, being able to differentiate between nausea and vomiting, and the ease of using the tools were challenges for adolescents. Recognizing that nausea and vomiting are subjective, complex, and multidimensional symptoms and that children’s developmental levels vary, the authors recommended instruments be developed specifically for children and adolescents in assessing nausea and vomiting.

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Multiple Symptoms

Twenty-one studies explored multiple symptoms that children and adolescents with cancer experience. Five qualitative studies examined various aspects such as symptom trajectory, how children incorporate the experience of symptoms into their paradigm of family, and how families coped with a child having cancer. Distress as an effect of symptoms was explored and reported in 9 studies from the child’s, adolescent’s, and parent’s perspectives. Symptom clusters were the focus of 5 studies, where results are unique to each study’s objectives and population. Lastly, 2 studies focused on identifying interventions to alleviate symptoms that children and adolescents with cancer experience.

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QUALITATIVE

Moody et al47 interviewed 31 children and adolescents with cancer about their experiences with the disease and identified 4 themes (Table 2). Within the themes of physical discomfort and disability, nausea was the most frequently cited despite aggressive antiemetic medications, followed by fatigue. Nausea and fatigue compounded the sense of loneliness and isolation felt by the subjects.

Woodgate and colleagues54,55 published 2 articles using data from a single longitudinal qualitative study. In the first article, Woodgate and Degner54 studied symptom trajectory and the concept of uncertainty in children with cancer and their parents. Through direct observation and formal interviewing of children, their parents, and their siblings, the researchers concluded that cancer-related symptoms appeared to cause not only physical problems but also stress and suffering. In addition, the families experienced “rough spots” that made adjustment to cancer especially difficult. Woodgate et al55 used these findings to determine the symptom trajectory of children with cancer within the context of the family and found that symptoms were multiple, varied in intensity, and continually evolving over time. A troubling finding was that some families view suffering as a necessary consequence of experiencing cancer in expectation that not all symptoms can be well managed. The children expressed symptoms as feeling states (Table 2). These findings seemed to be consistent with developmental stages, limited vocabulary in younger children, and the egocentrism common in childhood. The researchers suggested that multidimensional instruments are best suited to capture children’s self-report of symptoms. In a third publication, Woodgate56 described the concept of feeling states through interviews with children with leukemia or brain tumors. These children (a) experienced symptoms as multidimensional within the context of social interactions and their immediate environment, (b) experienced difficulty describing to others how they felt, (c) for various reasons did not always ask for help with their symptoms, and (d) responded to how their family and other important relationships reacted to the symptoms, which in turn caused the child to feel additional guilt.

A study with complementary results was conducted by McCaffrey46 in 2006. Parents and their children participated in individual audiotaped interviews about stressors related to cancer. Three of the children were in active treatment, whereas 3 were in remission. Major stressors related by the children addressed treatments and procedures, loss of control, body image, fear of dying, alopecia, and not being able to be with friends. The effects of experiencing these stressors were lack of self-esteem, cumulative drug effects, feelings of being miserable or fatigued, becoming more mature than their friends, missing school and not participating in sports, and weight loss. Missing school and friends and not being able to play with them were themes cited in previous research and are important to children with cancer. Coping mechanisms the children identified were resting, watching TV, preferring home cooking over hospital food, wearing a cap, doing crafts, and receiving back massages. Parents identified stressors similar to their children but also listed others that concerned the family. Lack of communication struggles with their partner, adult friends drifting away, missing the other children, and work stress were especially difficult. Coping strategies identified by the parents related to “getting away” such as music, exercise, relaxation-type activities, and having good communication with physicians and nurses. When hospital staff used effective communication and positive interpersonal skills, the everyday milieu of being in the hospital had a positive effect of the parents. Two of the parents felt that sharing their concerns with others on a regular basis helped them to better support their child.

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SYMPTOM DISTRESS

Hedström et al24 interviewed Swedish children with cancer, their parents, and nurses and found that, in children 12 years or younger, pain from diagnostic procedures and treatments, nausea, and fatigue were the most frequently mentioned and most distressing symptoms; however, in children 13 years or older, the most distressing symptom mentioned was nausea. In adolescents, physical symptoms and emotional distress were related. The authors suggest that younger children may lack the maturity to develop strategies to cope with fear and pain than compared with older children, but that older children may need more psychosocial support.

In a study in 2005 to investigate perceptions of distress in adolescents newly diagnosed with cancer, Hedström and colleagues43 found that aspects of distress with a high prevalence, such as somatic complaints, do not always correlate with being labeled “highly distressing.” In telephone interviews with 56 adolescents at 1 to 2 months after diagnosis, authors found that more than half reported losing hair, weight loss/gain, fatigue, and mucositis as the most prevalent physical symptoms. Fatigue, mucositis, nausea, and missing leisure time and school were cited as the most distressing. However, when asked which were the worst aspects, most adolescents cited worry about not getting well, mucositis, nausea, pain from procedures and treatments, and missing school as the worst. A year later, Hedström and colleagues44 published the results of physicians’ and nurses’ assessments of distress, anxiety, and depression in adolescents with cancer. Like the adolescents, physicians and nurses responded to the survey via structured telephone interviews. Results supported staff as reasonably accurate in assessing physical distress of adolescents, but underestimating the degree of distress caused by mucositis and overestimating levels of anxiety and depression. The conclusion was that it was best to rely on adolescents’ self-report to assess distress, anxiety, and depression as a consequence of cancer treatment.

In a 2008 publication, Enskär and von Essen27 described the use of a symptom scale they developed for children with cancer and found that two-thirds of the subjects experienced physical symptoms. Children undergoing cancer treatment were significantly more likely to report being concerned with hair loss (47 % vs 10%) and nausea (47% vs 14%) (P < .05 for each) and being fatigued (65% vs 43%) compared with children who completed treatment. In support of previous research, the researchers found that, of all the physical symptoms, only fatigue was reported by children (n = 4) who had completed treatment and felt their life was less than satisfying (76% vs 14%, P < .0001). More than two-thirds of the actively treated children reported they could not play every game they wanted to, wondered why they had developed cancer, often felt sad, and frequently felt isolated while hospitalized. Those who reported life less than satisfying were more likely to report fatigue, problems eating, nausea, and alopecia (P < .001). These results support a 2007 publication by Enskär and von Essen28 assessing adolescents and young adults on and off cancer treatment. Using the Life Situation Scale for Adolescents,40 the authors found physical distress defined as fatigue, eating problems, hair loss, and problems with taking medications reported by two-thirds of adolescents and young adults undergoing cancer treatment. More than half of adolescents and young adults who completed treatment reported that fatigue and eating problems continued to be prevalent and that life was less satisfying.

Two studies published in 2010 investigated parents’ perceptions of their child’s cancer-related symptoms.39,49 A prospective, repeated-measures study by Pöder et al49 collected data at 3 different points to determine symptom trajectory and found that lack of energy, lack of appetite, and pain were among the 5 most prevalent symptoms of the children as reported by parents. The most distressing symptoms identified were pain, feeling nervous, difficulty swallowing, and shortness of breath. There was a decreasing pattern to symptom prevalence for almost all symptoms except diarrhea, skin changes, and mouth sores. Weak to moderate associations (P < .001) were found between parents perceiving their child’s symptom burden as high and their own posttraumatic stress symptoms increasing. Parents who exhibited potential posttraumatic stress disorder also reported a higher symptom burden for their children than those who did not report potential posttraumatic stress disorder ( P < .01).

A descriptive study by Dupuis et al39 reported results of a symptom assessment by parents of children who had received intravenous chemotherapy in the previous month. The parents were recruited from 5 Ontario pediatric oncology centers. Parents (n = 158) completed 1 of 2 questionnaires containing 69 and 71 symptoms for children 4 to 7 years or 8 to 18 years old, respectively. Each symptom was ranked for prevalence, severity, and degree of bother. The 10 most severe and bothersome symptoms listed, in order of prevalence, were mood swings, fatigue, disappointment at missing activities with friends, feeling worry about treatment and adverse effects, nausea, loss of appetite, painful joints and muscles, general malaise, feeling worry about coming to the clinic or hospital, and dry mouth or lips. It is noteworthy that, in this study, half of the most prevalent, severe, and bothersome symptoms were in the psychosocial category. It is also not surprising that fatigue, nausea, and pain were included in this list.

A study by Walker et al52 found different results than those of Pöder and colleagues. Collecting data on symptom occurrence, frequency, intensity, and distress in adolescents before and 1 week following chemotherapy, they found that, with the exception of fatigue, symptoms such as pain, appetite changes, nausea, numbness or tingling, difficulty sleeping, sadness, worry, or itching, although present, showed no changes between the 2 time periods. Fatigue was the most commonly reported symptom and the only one that showed an increase in intensity and frequency. Although fatigue was prevalent, it was also one of the least distressing. Nausea was the only symptom where distress values increased from the first to second time period. At both data points, at least half of the 51 subjects reported fatigue, pain, changes in appetite, and nausea.

To study symptom trajectory on 3 occasions during myelosuppressive chemotherapy and the following 2 weeks, 66 adolescents completed the Memorial Symptom Assessment Scale (10–18).38,71 Significant decreasing linear trends were found in fatigue, feeling sad, weight loss, feeling irritable, worrying, and sweating. Three symptoms that showed significant increases from chemotherapy administration (T1) to 1 week after chemotherapy (T2) and then decreases from T2 to 2 weeks after chemotherapy (T3) were drowsiness, nausea, and vomiting. Nausea was more prevalent than vomiting. However, 47% of the adolescents reported nausea the week before chemotherapy, a finding that calls for further investigation. Fatigue had the highest occurrence rates at time 1 and time 2. At all 3 time points, most of the adolescents reported severe/very severe fatigue. Fatigue continues to be one of the most common symptoms found in studies. At all 3 time points, pain and headache were common and constant in the moderate to severe/very severe range for a majority of the adolescents. The most severe symptoms among those who reported them were alopecia, pain, irritability, anorexia, changes in taste, mouth sores, sleeping disturbances, headache, alterations in self-perception, constipation, and difficulty swallowing. About 80% of adolescents rated these moderate to severe/very severe throughout all 3 time points. Scoring much lower were sweating, vertigo, difficulty concentrating, and feeling nervous.

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SYMPTOM CLUSTERS

Five studies reported that symptoms of cancer patients fall into clusters, but results vary according to the study’s objectives. Using a prospective, descriptive pilot study, Gedaly-Duff et al42 collected symptom data from 9 school-aged children with acute lymphoblastic leukemia and their parents. Data collection began the evening of the day the children received intravenous vincristine. Using wrist actigraphy and information from sleep diaries and questionnaires from both the child and parents for 72 hours, the researchers found that pain, sleep disturbances, and fatigue cluster together. On a scale of 0 to 4, pain scores on 5 of the children ranged from 0 to 3; children had daily average 19.8 nighttime awakenings higher than normal, and on a scale of 0 to 4, fatigue scores for all children ranged from 1 to 3. Parents also experienced sources of pain, higher-than- normal nighttime awakenings, and fatigue levels from 45 to 50 on a 0- to 100-point scale.

Using the Memorial Symptom Assessment Scale (10–18) and the Play Performance Scale for Children,72 Yeh et al57 conducted a study with Taiwanese pediatric oncology patients (n = 144) to identify symptom clusters and any correlations that might exist between gender, type of cancer, disease status, pain status, and functional status. Analyses identified 5 clusters (Table 2). Gender differences significantly (P < .05) correlated with cluster 5 (gastrointestinal irritations and pain), with boys having higher distress in this cluster than girls. Although not statistically significant, patients with leukemia experienced more symptom distress in cluster 3 (fatigue, sleep disturbance, and depression) than those with solid tumors or lymphoma. Patients in pain reported higher symptom distress in all clusters (.01 < P < .001). Patients with high functional status reported more distress with cluster 5 than with the other clusters, but not significantly so.

An unpublished dissertation by Phillips31 examined symptom distress in adolescents 11 to 20 years old with cancer (n = 48) to determine whether disease-related symptoms occurred in clusters. The Symptom Distress Scale48 was administered 4 times in the first 6 months since diagnosis. Using factor analysis with varimax rotation, the author identified 3 clusters of symptoms: physical limitations (bowels, getting around, sleeping difficulty, and tiredness), emotional and cognitive distress (appearance, concentration, feeling, and pain), and gastrointestinal distress (appetite and nausea). Throughout the data collection, the level of nausea was consistently scored by the adolescents as moderate to high, whereas all other symptoms were scored at variable levels of intensity. In a study to establish psychometric properties with the MD Anderson Symptom Inventory among Taiwanese adolescents with cancer, Tseng et al51 identified 2 clusters of symptoms: general symptoms (distress, shortness of breath, sleep disturbance, drowsiness, pain, fatigue, sadness, dry mouth, difficulty remembering, and numbness) and gastrointestinal symptoms (nausea, vomiting, and lack of appetite). Researchers also found that Taiwanese adolescents with low Karnofsky scores (≤80) also had significantly greater symptom severity and interference in their daily lives (P < .001 for each), likewise those on treatment compared with those off treatment (P < .01).

Hockenberry et al45 explored the correlations between fatigue, nausea and vomiting, and sleep disturbances and their influence on clinical outcomes identified as behavior, depression, and performance status in children and adolescents receiving intravenous emetogenic antineoplastic therapy. Fatigue, behavior, depression, and performance were measured on day 1, at the initiation of therapy, and a week later, whereas sleep disturbances and nausea and vomiting were assessed every 24 hours and for 72 hours after discharge. Parents participated in assessing nausea and vomiting and behavior. Fatigue and sleep disturbances when occurring together had a multiplicative influence on depressive symptoms 1 week after chemotherapy in adolescents. When fatigue increased over time and coupled with sleep disturbances, this cluster served as a predictor of behavior changes and depressive symptoms. The previous study by Yeh et al57 found similar results with fatigue, sleep disturbances, and depression. This information serves as important education for parents and a valuable assessment for clinicians. Sleep disturbances did not cluster with fatigue in children 12 years or younger, but children with higher levels of fatigue did display increases in depressive symptoms and behavior changes over time. Although no data were displayed, the researchers noted that parents served as accurate proxies in assessing fatigue, behavior changes, depressive symptoms, and physical performance for their children. Almost all of the children and adolescents experienced nausea (82%), and about half of the adolescents (48%) and 41% of the children experienced vomiting. However, nausea and vomiting remained independent of fatigue and sleep disturbance.

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INTERVENTIONS

Two studies addressed interventions to alleviate symptoms. Williams et al53 found that fatigue, nausea, difficulty eating, fever, oropharynx lesions, pain, and alopecia were the most frequent symptoms reported in a study of 11 children and adolescents. Care interventions to address symptoms were clustered in diet/nutrition/lifestyle changes, mind/body control, manual healing methods, and biologic treatments. The researchers found that offering favorite foods that were high-fat and high-caloric, encouraging rest and naps, breathing exercises, reading, playing video games and watching television, and prayer were the most frequently used interventions. Rheingans50 conducted a study of the relationship between the management of pediatric cancer symptoms and nursing job satisfaction. The average number of reported symptoms was 6. In order of frequency, pain followed by nausea/vomiting, alopecia, worry, fatigue, mouth sores, and difficulty sleeping were the most often reported. The average number of nursing interventions to treat each symptom was 12.7, with the greatest number to manage pain and the least to manage hair loss. In this study, pain was the most effectively treated, and fatigue was the least treated. The most common nursing interventions used in addressing all symptoms were emotional support, encouraging family involvement, active listening, family support, and education.

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Discussion

This systematic review identified 52 studies published between 2002 and 2010 that addressed the symptoms of children and adolescents with cancer and included experiences from their own perspective as described in their own words, the language they used to communicate symptoms, and the perspectives of family members and healthcare providers. Although these studies helped to address the gaps in research identified by Docherty in 2003, much progress remains to be made in including preschool-aged children in research, analyzing the impact of sociodemographic data routinely collected, designing longitudinal trials conducting qualitative studies, developing conceptual models, and creating assessment instruments exclusively for use with children and adolescents. Nearly a quarter of the studies published between 2002 and 2010 included preschool-aged children, a positive step toward addressing Docherty’s first concern. However, the age ranges overlapped between studies, and little distinction was made between age groups. For example, the entry age for school-aged children varied from age 5 to 11 years. When studies identified the entry age to be 10 years, the study extended to 17 to 20 years of age. In light of the developmental leaps and age-related issues that occur from preschool through all levels of education, standardizing the age ranges would allow more focus on analyzing the differences between age groups with respect to developmental issues and symptoms.

Age is not the only sociodemographic factor that needs further consideration. Children from different cultures may respond to symptoms differently and have different coping mechanisms and different social support structures. There is great cultural diversity among the children and their families who seek cancer care, and understanding the range of responses related to culture is crucial. Culture and language can be barriers to effective communication of a child’s needs. The subjects for most of these studies were white children from North America or Western Europe, but several studies were conducted with Spanish-speaking children6,7,38,45 or in the Middle East4,17 or Asia.12,13,32,51,57 Several studies noted differences in gender5,7,25,29,57 and culture.4,7,10 Although in many of the prior studies gender and culture were not included in the analyses, studying differences with respect to gender and culture in future studies as well as age might yield noteworthy results.

Symptoms, whether due directly to cancer or to related procedures or treatment, are complex and change over time. Almost half of the studies used a short-term longitudinal or repeated-measures design. Most of the studies used single points in time to collect data, 2 asked the parents to think back a week, and another used repeated measures over 6 months, but none followed children from diagnosis to end of treatment or survivorship. Without a consistent use of a particular single point in time of a patient’s treatment, results may differ considerably when assessing symptoms around chemotherapy administration. In addition, much could be learned from longitudinal studies to identify best strategies for symptom management, assess how staging of disease trajectory affects symptoms, assess how coping mechanisms change over time, and understand how children and their families adapt to the cancer, symptoms, and life after cancer. As mortality in children declines, focused studies of symptom trajectory and symptom management during treatment and through survivorship are needed.

Because many cancer symptoms are highly subjective, additional qualitative studies that could serve as the basis of instrument development are crucial for assessing children’s discomfort, distress, and quality of life. Hockenberry et al23 developed tools for measuring fatigue in children with cancer. This is an important step in managing fatigue as it is a vexing issue for many patients, both during treatment and long after. Fatigue is one of the most researched and commonly experienced symptoms. Whereas younger children conceive of fatigue as simply a tiredness, adolescents include mental weariness and emotional aspects as part of the fatigue concept.23 Research suggested that if fatigue is intervened in an early stage, it might not progress to shut down fatigue.14 Interventions to ameliorate the intensity and frequency of fatigue need more exploration. Although many studies focused on fatigue solely, when multiple symptoms were studied fatigue still remained a problem even long after active treatment ceased.

With only 4 studies conducted in the review period addressing nausea and vomiting, focusing additional attention to how children in different developmental stages view nausea and vomiting might advance finding interventions that are most effective. Baker and Ellett34 articulated the difficulties in analyzing results from adolescents using adult version instruments. The occurrence of nausea and vomiting is highly variable between individuals. Regardless of age or gender, achievement of complete protection from nausea and vomiting in the acute phase of chemotherapy administration was related to continued complete protection in the delayed phase.35

Treatment and procedural pain rather than pain from the cancer was cited as distressing by Hedström et al.24 Research into effective measures other than pharmacological to alleviate this type of pain would be valuable.

Most studies and instruments evaluated single symptoms. Symptoms due to cancer treatment typically do not occur singly but frequently present as multiple symptoms simultaneously.21,57 Additional research in multiple and symptom clusters, cause, and multiplicative effect over time will help to fill that gap. The lack of research and age-appropriate instruments and studies both cross-sectional and longitudinal that measure multiple symptoms and symptom clusters also remains a gap.

Docherty noted the lack of theoretical frameworks in earlier research. Conceptual models to frame a study were identified in only 8 studies.7,10,16,19,45,53,54,57 Theories and conceptual models provide clarity for research designs, help explain findings, and assist in the translation of knowledge into practice. Through displaying a visual overview of a given phenomenon, relationships can be clarified, antecedents and consequences identified, and trends in research direction noted. The lack of clarity regarding conceptual models of disease and treatment related symptoms in children with cancer makes summarization across studies difficult. Terms such as symptom distress, symptom intensity, and symptom occurrence are often used interchangeably. Despite that symptoms are often abstract and intangible, children as young as 5 years old are able to give relevant and consistent information about their symptom experiences if appropriate instruments are used.

The majority of research in children remains descriptive with some longitudinal work. Lacking are intervention studies that focus on the identified issues found in the descriptive work. The descriptive work in single symptom research as well as multiple symptoms provides some base for the development and testing of interventions. The limiting factors again are the small sample size of studies and wide range of ages that are studied. Sample access dependent on setting is an issue. Multisite studies and collaborations are needed to assist with the development of larger data sets across age groups and symptoms.

Progress has been made in the 8 years since Docherty’s review3 in that many of the mixed methods and quantitative studies used instruments designed explicitly for children. Where possible and reasonable, children served as self-reports. When not possible, parents most frequently served as proxies, especially for younger children. Although a proxy has been shown to be fairly accurate, instruments possibly with pictures should be developed to more clearly allow children to communicate their needs and wishes. Instruments that rely solely on text and reading ability will not serve preschool-aged groups. Without an adequate vocabulary to express their thoughts, communication is often difficult, and as young children conceptualize differently, they may not understand what the instrument is asking. Several studies, especially those conducted by teams led by Hockenberry et al and Hinds et al, have developed age-appropriate instruments to measure symptoms.

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Nursing Implications

Throughout this review, nursing implications were embedded in the discussion of studies. Points gleaned from the review where nurses can either improve care or prioritize research follow. Parents have shown that they are accurate proxies for identifying their child’s symptoms. Clinical staff needs to recognize that parents communicate valuable and reliable information about their child and that this information needs to be included when developing a plan of care. Likewise, clinical staff can serve as a support for parents to express their feelings, and as a channel for clear and effective communication. Pharmacological analgesia is effective in addressing pain; patient-controlled boluses can safely be used by children; nurses can advocate the use of analgesia especially when patients are experiencing breakthrough pain. The few studies that considered gender noted that girls are more verbal and demonstrative about their symptoms. Careful assessment of boys will alleviate any unexpressed discomfort. Fatigue is one of the most enduring symptoms; education and early interventions such as nutrition and rest are important. Accompanying fatigue are sleep disruptions. Careful planning by clinical staff regarding nighttime activities may reduce nighttime awakenings by patients and parents. Higher fatigue levels and sleep disturbances can influence behavior changes and depressive symptoms. This information should help prioritize the need to intervene early on fatigue and support quality sleep. Child- and adolescent-appropriate instruments are needed to assess and manage nausea and vomiting. Detailed symptom assessment early and throughout treatment is a necessary component of care for the development of early and sustaining interventions for children and adolescents with cancer. Two studies referenced anticipatory nausea; psychosocial support may help alleviate these occurrences. Lastly, more research is needed investigating symptom clusters, their cause, the multiplicative affect, and effective interventions.

The focus of this systematic review was on summarizing and critiquing recently gained knowledge of cancer-related symptoms among children and adolescents and identifying the direction of current research. A limitation is that although children and adolescents often encounter numerous complex physical and behavioral problems long after treatment, this review did not include studies that focused exclusively on posttreatment survivors or on patients at the end of their lives. To understand fully the state of cancer symptom assessment and management, knowledge of those populations would be needed. Because the incidence of cancer in children is rare compared with adults, sample sizes are usually small and can hamper statistically meaningful results. Multicenter studies, both descriptive and intervention, could enhance sample sizes, decrease enrollment periods, and improve collaboration, with the eventual outcome being higher quality of care for children and adolescents with cancer.

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Keywords:

Adolescents; Cancer; Children; Experiences; Symptoms

© 2012 Lippincott Williams & Wilkins, Inc.

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