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a Symptom Care Team, Great Ormond Street Hospital, London, United Kingdom
b Queen's Medical Centre, University Hospital, Nottingham, United Kingdom
c United Kingdom Children's Cancer Study Group, University of Leicester, Leicester, United Kingdom
d Department of Child Health, School of Medicine, Cardiff University, Cardiff, United Kingdom
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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PATIENTS AND METHODS. This was a questionnaire survey of 22 United Kingdom Children's Cancer Study Group centers. Data were collected by clinical nurse specialists in pediatric oncology regarding children/young people between 0 and 20 years of age, using 2 questionnaires. The first collected demographic details and the second data about the occurrence and perceived impact of symptoms.
RESULTS. There were 185 children/young people from 20 centers registered in the study, aged 4 months to 19 years (mean: 8.7 years), who received palliative care for a median of 34 days (range: 0–354 days). Data were analyzed for 164 children/young people who died during the study. Between referral to palliative care and death, there were significant increases in the number of symptoms reported and children/young people experiencing pain (70.6% vs 91.5%). Symptoms included some that often go unrecognized in children/young people, for example, anorexia, weight loss, and weakness. The nature of the underlying malignancy significantly influenced the prevalence of some symptoms. There were significant differences between the symptoms associated with central nervous system tumors and other groups. Pain other than headache occurred more commonly in children with solid tumors (98.4%) than in others (87%). Neurologic symptoms, including headache, were universal among those with central nervous system tumors.
CONCLUSION. This study documents the frequency of symptoms and contrasts the experiences of children/young people with different groups of malignant disease. With access to skilled symptom control, pain can be effectively treated in most children/young people. Some other symptoms often remain intractable. The study highlights the need for further research to establish the effectiveness of therapeutic interventions for symptom control and their impact on the quality of life for children/young people dying from cancer.
Key Words: pain management • cancer • pain • symptom control • nausea and vomiting
Abbreviations: UKCCSG—United Kingdom Children's Cancer Study Group • PWG—Palliative Care Working Group • POON—pediatric oncology outreach nurse specialist • CNS—central nervous system
The prognosis for children/young people with cancer continues to improve, and 70% can now expect to be cured. Unfortunately this means that 30% of children/young people do still die, the majority from progressive disease (United Kingdom Children's Cancer Study Group [UKCCSG], unpublished data, 2003). Providing effective palliative care for these children/young people and their families is an essential part of their care.
Palliative medicine in children/young people is a relatively new discipline, and there has been little formal research. Practice is often still based primarily on clinical experience and adaptation of practice in adults. There are important differences between adults and children/young people with malignant diseases, which will influence their symptoms and management. Children/young people develop a very different spectrum of tumors from adults and span a wide range of developmental stages, from birth to adolescence. These factors influence physiologic, pharmacologic, and psychological aspects of their management.1 Studies of palliative medicine in children/young people are essential so that their treatment in the future can be based on data that are reliable and related specifically to children/young people.
Management of symptoms is a major aspect of palliative care for children/young people dying from cancer. The problems they will face have been outlined in a number of reports.2–7 However, there has been no prospective study assessing the incidence and spectrum of symptoms that develop in children/young people dying from cancer. This contrasts with the adult literature in which a number of authors have considered the question.8–11
The UKCCSG is the coordinating body for pediatric oncology, and most children/young people with cancer in the United Kingdom are treated under the supervision of 1 of its 22 centers. In 1997, a Palliative Care Working Group (PWG) was formed jointly between the UKCCSG and the Pediatric Oncology Nurses Forum. This group included representatives from oncology, radiotherapy, oncology nursing, palliative medicine and nursing, pharmacy, and social work. The PWG group developed this survey across the United Kingdom with the aim of providing broad baseline information about the symptoms that our patients with progressive disease develop during the course of their terminal illness, how they are currently managed, and the services that the different UKCCSG centers provide for palliative care. Through this study, we also hoped to highlight problems for future investigation.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Potential participants were identified at each center by the physician responsible for their care, who approached the child/young person and/or family as appropriate and invited them to participate in the study. Information was collected using 2 questionnaires, which were completed in collaboration with the child/young person and family by the key health professional coordinating palliative care for that child/young person. In all of the centers at that time, this was the POON. Data from children/young people who remained alive at the end of the study period were excluded from analysis.
Entry to the study was at the point when the clinical team considered that the focus of the child/young person's care was deemed to have changed to palliative. A short "entry questionnaire," containing basic information and demographic details about the child/young person, was completed by the POON at entry to the study. A "symptom control form" was also completed at entry to the study and then each month until the child's death. The POONs were asked to complete the symptom control form choosing responses that reflected the perception of the patient's condition over the past month.
To see whether the pattern of palliative care problems for a child/young person might be anticipated according to their underlying tumor type, the relationship between the symptoms and tumor type was considered. Children/young people were grouped as having leukemia or lymphoma, primary central nervous system tumors, or other solid tumors. Symptoms in the last month of life compared between the groups.
The "symptom questionnaire" was in 3 sections collecting information about the child/young person's symptoms, pharmacologic management, and the services involved in providing palliative care. Results from these latter sections are reported separately. The symptoms listed and management choices on the questionnaire were developed by the multidisciplinary PWG, based on the structured case notes used by palliative care teams at a number of the UKCCSG centers. A comprehensive list of symptoms was identified (Table 1). Some of these were general problems, such as weight loss, pain, and mood. Others were more detailed, system-related symptoms, and the categories included gastrointestinal, hematologic, and respiratory problems. Each symptom was assessed and ranked by the professional as being of no problem to the child/young person and family, a minor problem, or a major problem. It was also noted whether or not major problems were responding to treatment. Management was considered to be "effective" if it was associated either with resolution of a symptom or with a change from "major" to "minor." The questionnaires were piloted for 1 month in 3 major centers for understanding and ease of completion. Wording and layout were modified accordingly.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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1, 2, 3, 4, 5, or 6 forms was 164, 126, 80, 56, 35, and 24, respectively. For all of the comparative analyses, data were included only from patients who had completed 2 forms. For descriptive purposes, data from patients who died within 1 month of entry (and, therefore, completed only 1 form) were considered as data from the last month of life. The prevalence of symptoms at entry and during the last month of life are compared in Table 1. Pain was the most common (70.6% at entry, 91.5% in the last month). Other symptoms occurring in >50% patients included weakness and weight loss at entry and weakness, weight loss, anorexia, vomiting, and constipation in the last month of life. In all, 18 of 34 symptoms were significantly more prevalent in the last month of life than at entry to the study. The number of symptoms experienced by patients increased significantly between study entry (median: 8; range: 0–24) and the last month (median: 14; range: 0–31; P < .001, Wilcoxon rank sum; 95% confidence interval: –6 to –4).
The most significant symptoms for children/young people and families are those that are unresolved or fail to respond to treatment. Because these present the greatest challenge for clinicians, we identified them specifically.
At entry into the study, tumor type significantly influenced the prevalence of 9 of the 34 symptoms: weakness, headache, dizziness, weight gain, mobility, speech, vision/hearing, anemia, and bleeding. By the last month of life, an additional 5 symptoms were also significantly influenced by tumor type: pain, anorexia, swallowing, excess secretions, and convulsions.
A number of differences in symptom prevalence (Kruskal-Wallis rank sum test; Table 3) were observed between the central nervous system (CNS) and the other solid tumor patients (8 and 14 observed symptom differences at entry and last month of life, respectively). A similar number of differences was reported between the CNS and the leukemia/lymphoma patients (8 and 9 observed differences at entry and last month of life, respectively) but significantly fewer differences observed between the leukemia/lymphoma and other solid tumor patients (0 and 2 observed symptom differences at entry and last month of life, respectively).
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Although philosophically a subgroup of pain, headache was considered separately in our study as in others,12 because it is often identified separately from other pains by patients. This was true in our study for leukemia/lymphoma patients and those with other solid tumors. In patients with CNS tumors, headache and pain were highly associated (P < .001, 
-a = 0.66).
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Respiratory symptoms have been reported in 30–40% of children/young people dying from cancer.20,21 The data from our study suggest that dyspnoea and excess secretions become major problems in around a quarter of patients during the last month of life. Research into the management of dyspnoea in adults22,23 is relevant to the care of children/young people, although the range of underlying causes may be different.
The number of symptoms that were significantly influenced by tumor type was higher in the last month of life than when palliative management began (Table 3). This suggests that, as diseases progress, it is more difficult to maintain control of symptoms in some conditions than others.
Pain (other than headache) was less likely in the CNS group than in the leukemia/lymphoma or solid tumor groups. Perhaps surprisingly, symptoms associated with myelosuppression, such as anemia and bleeding, were equally common in patients from the leukemia/lymphoma group and the solid tumor group. These were significantly less likely in the CNS group. Weight loss and anorexia were most common in children/young people with solid tumors. As might be anticipated, symptoms associated with neurologic deterioration were significantly more likely in the CNS tumor group. These included headache, swallowing difficulties, dizziness, excess secretions, and problems with hearing, vision, speech, and mobility.
It is often thought that certain sources of pain, such as metastatic bone disease, are more difficult to manage than others. Our data provide limited support for that. The extent or location of metastases was not significant in a multiple regression model, although reporting of pain in patients with metastases was significantly different from those without metastases in the last month of life. In the palliative phase, however, radiologic imaging is often kept to a minimum, and there were many missing data points.
The main purpose of this study, however, was to define the incidence of symptoms and their relative importance, and it is the first study of its kind. The descriptors used, major problem (which was further subdivided into responding and not responding), minor problem, or none, were designed for that purpose and are less sensitive to changes in symptom severity than specific symptom measurement tools. The descriptors in this study are more likely to underestimate than to overestimate such changes, and these data should form the basis of further, more detailed studies of individual symptoms using appropriate scales.
The apparent difference in the likelihood of controlling symptoms in different tumor types may be partly because of the nature of the symptoms that the children/young people encounter. Pain, which is usually responsive to current approaches to treatment, was the most common symptom experienced by children/young people with leukemia and lymphoma and with solid tumors. However, in children/young people with CNS tumors, pain was less common, and difficulties with speech, mobility, and neurologic deficits were prominent. These are symptoms that often remain unresolved despite involvement of the palliative care team. It is likely that difficulty communicating resulted in underreporting of pain in the CNS group, especially as death approached. At entry to the study, 88% of children in the CNS group retained speech and the capacity to communicate, but this figure dropped to 39% by the last month of life (data not shown).
This was a prospective study of a specialized subject area that is not easy to examine in a rigorous manner. There were several potential weaknesses in the study that should be kept in mind when interpreting the results.
Entry to the study was when the child/young person was deemed by the clinical team to have entered a "palliative phase." Exact definition of this point was subjective, at the discretion particularly of the responsible pediatric oncologist. Although from a scientific point of view this is less than satisfactory as an entry point into a study, it does accurately reflect clinical practice and is perhaps preferable to imposing objective but necessarily arbitrary entry criteria.
Reference has already been made to the limitations of the broad descriptors "major problem," "minor problem," and "no problem" in this study. These are blunt tools for assessing changes in symptom severity. Having identified in this study which symptoms are important to children/young people with cancer, it will be important in future studies to address effective management using appropriate scales designed for the purpose.
The data from our study focused on the incidence of symptoms and did not attempt to assess the relative contributions made by different symptoms to the loss of a child/young person's quality of life. Furthermore, it was professionals who assessed how much of a problem each symptom was rather than the children/young people directly or their families. So, although this study describes symptoms that are common and highlights those that are difficult to treat, it does not on its own define therapeutic research priorities for the future. Future studies, which include the child/young person's and the family's own reported experience would be valuable. Currently there is no validated measure of quality of life for children/young people with progressive malignant disease. Developing one will be important, making it possible to assess the relative contributions of the different symptoms to the child/young person's life and facilitating meaningful evaluation of the effectiveness of symptom control interventions.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Our study suggests that some symptoms, such as pain and vomiting, usually resolved with appropriate intervention. Other symptoms, such as weakness, anorexia, and weight loss, were less amenable to effective intervention (Fig 1). Some symptoms, especially constipation and dyspnoea, were easier to treat in some children/young people than in others. Overall, effective symptom management was most likely in children/young people with leukemia and lymphoma and least likely in children/young people with CNS tumors.
The data indicate that pain can now be effectively treated in most children/young people with access to skilled symptom control but that weakness, anorexia, problems with mobility, and neurologic deficits remain often intractable. The study highlights the need for further research to establish the effectiveness of therapeutic interventions for symptom control and, in particular, the impact that these can make on the quality of life for children/young people dying from malignant disease.
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ACKNOWLEDGMENTS |
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We thank the clinical nurse specialists in pediatric oncology who care for children/young people in the palliative phase of cancer and who collected, collated, and submitted the clinical data in this study and Dr John Imeson for his help in collecting the initial data.
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FOOTNOTES |
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Address correspondence to Martin Hewitt, BSc, BM, MD, FRCP, FRCPCH, United Kingdom Children's Cancer Study Group, University of Leicester, 3rd Fl, Hearts of Oak House, 9 Princess Rd West, Leicester, LE1 6TH, United Kingdom
The authors have indicated they have no financial relationships relevant to this article to disclose.
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REFERENCES |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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  J. Wolfe, J. F. Hammel, K. E. Edwards, J. Duncan, M. Comeau, J. Breyer, S. A. Aldridge, H. E. Grier, C. Berde, V. Dussel, et al. Easing of Suffering in Children With Cancer at the End of Life: Is Care Changing? J. Clin. Oncol., April 1, 2008; 26(10): 1717 - 1723. [Abstract] [Full Text] [PDF]
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J. Vickers, A. Thompson, G. S. Collins, M. Childs, and R. Hain Place and Provision of Palliative Care for Children With Progressive Cancer: A Study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group J. Clin. Oncol., October 1, 2007; 25(28): 4472 - 4476. [Abstract] [Full Text] [PDF]
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