A study of the nutritional status of pediatric cancer patients
Oncology at EOL
• The records of 455 children were reviewed to investigate the relationship of nutritional status at time of first referral to various measurements of disease and survival. Initial symptoms of weight loss, anorexia, fatigue, and early satiety were all directly correlated. Serum albumin level and nutritional status were not directly correlated. Likewise, there was no direct relationship between performance status and nutritional status. However, higher values of serum albumin were associated with better performance status. Nutritional status was directly related to freedom from relapse among children with solid tumors whether they had localized or nonlocalized disease. In addition, improved survival was related to good nutritional status for children with localized disease, whereas those with advanced disease had a poorer survival regardless of their nutritional status. Nutritional status appears to have prognostic implications among children with cancer.(Am J Dis Child 1981;135:1107-1112)
1981-12
Donaldson SS; Wesley MN; DeWys WD; Suskind RM; Jaffe N; vanEys J
American Journal Of Diseases Of Children
1981
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/archpedi.1981.02130360015007" target="_blank" rel="noreferrer">10.1001/archpedi.1981.02130360015007</a>
Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance
adolescent; Child; Female; Humans; infant; Male; Death; Adult; social support; childhood cancer; Preschool; Oncology at EOL; Neoplasms/psychology; Brain Neoplasms/therapy; dying; Terminal Care; Leukemia/therapy; Lymphoma/therapy; Neoplasms/therapy; palliative terminal care; psychological support; symptoms and suffering
AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate programs to address the challenges faced by these children. Procedure: Between 1994 and 2000, 28 children died after treatment for cancer at Hamamatsu University Hospital, Japan. The circumstances, signs and symptoms at the end of life of these children were analyzed through their medical records. Results: Of the 28 children, the underlying diseases were leukemia/lymphoma (LL group; n=11), brain tumors (BT group; n=7), and other solid tumors (OST group; n=10). Records showed poor appetite (100%), dyspnea (82.1%), pain (75.0%), fatigue (71.4%), nausea/vomiting (57.1%), constipation (46.4%) and diarrhea (21.4%) among these children. Anxiety was reported in 53.6% of the entire group of 28 children; however, no child in the BT group manifested anxiety. However, disturbance of consciousness was reported in all children in the BT group, which was significantly greater than in the other groups. Awareness, fear or acceptance of the imminence of his/her own death as indicated by verbal expression was reported in nine children (32.1%). Conclusions: Using the data obtained in the present study, we describe situations faced in the terminal care of children. It is important to address the problems revealed by this analysis in order to achieve improvements in both the physical and psychological care of children with terminal cancer.
2003-02
Hongo T; Watanabe C; Okada S; Inoue N; Yajima S; Fujii Yuji; Ohzeki T
Pediatrics International
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1046/j.1442-200X.2003.01668.x" target="_blank" rel="noreferrer">10.1046/j.1442-200X.2003.01668.x</a>
Conducting End-of-Life Studies in Pediatric Oncology
Humans; Terminal Care; Pediatrics; Pediatric Nursing; Longitudinal Studies; Reproducibility of Results; Oncology at EOL; Pediatric oncology; Clinical Nursing Research; dying children and adolescents; end-of-life research; Oncologic Nursing/ethics
Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.
2007-06
Hinds PS; Burghen E; Pritchard M
Western Journal Of Nursing Research
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0193945906295533" target="_blank" rel="noreferrer">10.1177/0193945906295533</a>
Does phase 1 trial enrollment preclude quality end-of-life care? Phase 1 trial enrollment and end-of-life care characteristics in children with cancer
Oncology at EOL
BACKGROUND: End-of-life care (EOLC) discussions and treatment-related decisions, including phase 1 trial enrollment, in patients with incurable disease are complex and can influence the quality of EOLC received. The current study was conducted in pediatric oncology patients to determine whether end-of-life characteristics differed between those who were and were not enrolled in a phase 1 trial. METHODS: The authors reviewed the medical records of 380 pediatric oncology patients (aged <22 years at the time of death) who died during a 3.5-year period. Of these, 103 patients with hematologic malignancies were excluded. A total of 277 patients with a diagnosis of a brain tumor or other solid tumor malignancy were divided into 2 groups based on phase 1 trial enrollment: a phase 1 cohort (PIC; 120 patients) and a non-phase 1 cohort (NPIC; 157 patients). The EOLC characteristics of these 2 cohorts were compared using regression analysis and chi-square testing. RESULTS: A comparison of patients in the PIC and NPIC revealed no significant differences in either demographic characteristics (including sex, race, religious affiliation, referral origin, diagnosis, or age at diagnosis, with the exception of age at the time of death [P =.03]) or in EOLC indices (such as use or timing of do not attempt resuscitation orders, hospice use or length of stay, forgoing life-sustaining therapies, location of death, time from first EOLC discussion to death, and total number of EOLC discussions). CONCLUSIONS: The results of the current study of a large cohort of deceased pediatric cancer patients indicate that enrollment on a phase 1 trial does not affect EOLC characteristics, suggesting that quality EOLC can be delivered regardless of phase 1 trial participation. Cancer 2015;121:1508-1512. © 2014 American Cancer Society.
2015-05
Levine DR; Johnson LM; Mandrell BN; Yang J; West NK; Hinds PS; Baker JN
Cancer
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/cncr.29230" target="_blank" rel="noreferrer">10.1002/cncr.29230</a>
Easing of suffering in children with cancer at the end of life: is care changing?.
Child; Humans; Cohort Studies; Resuscitation Orders; Psychological; Stress; DNAR; Oncology at EOL; Neoplasms/th [Therapy]; Palliative Care/mt [Methods]; Palliative Care/td [Trends]
PURPOSE: In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life., METHODS: Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort)., RESULTS: In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002)., CONCLUSION: Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.
2008
Wolfe J; Hammel JF; Edwards KE; Duncan J; Comeau M; Breyer J; Aldridge SA; Grier HE; Berde C; Dussel V; Weeks JC
Journal Of Clinical Oncology
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/jco.2007.14.0277" target="_blank" rel="noreferrer">10.1200/jco.2007.14.0277</a>
Radiation Therapy at End of Life in Children
Oncology at EOL
2015-02
Panoff J; Simoneaux RV; Shah N; Scott M; Buchsbaum JC; Johnstone PAS; McMullen KP
Journal Of Palliative Medicine
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2014.0219" target="_blank" rel="noreferrer">10.1089/jpm.2014.0219</a>
Symptoms and Suffering at the End of Life in Children with Cancer
Child; Humans; Terminal Care; Health Care Surveys; Parents; Withholding Treatment; Logistic Models; Questionnaires; Physicians; Boston; Longitudinal Studies; Quality of Health Care; quality of life; Empirical Approach; Non-U.S. Gov't; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Psychological; Stress; Clodronate; Neoplasms/complications/therapy; Oncology at EOL; Pain/etiology/therapy; Anorexia/etiology/therapy; home care services; Children's Hospital (Boston); Constipation/etiology/therapy; Dana-Farber Cancer Institute (Boston); Diarrhea/etiology/therapy; Dyspnea/etiology/therapy; Fatigue/etiology/therapy; Palliative Care/standards/statistics & numerical data
Cancer is the leading cause of nonaccidental death in childhood.1 There has, however, been little evaluation of the overall experience at the end of life of children who are dying of cancer or of their symptoms other than pain.2,3 A number of studies have demonstrated that among adults, the quality of care at the end of life is suboptimal.4–8 For example, one study of elderly patients found that there was considerable suffering at the end of life, with up to 25 percent of patients experiencing moderate-to-severe pain in the last three days of life.7 It is not known . . .
2000-02
Wolfe J; Grier Holcombe E; Klar Neil; Levin SB; Ellenbogen JM; Salem-Schatz S; Emanuel EJ; Weeks Jane C
New England Journal Of Medicine
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1056/NEJM200002033420506" target="_blank" rel="noreferrer">10.1056/NEJM200002033420506</a>
The Measurement of Symptoms in Children with Cancer
Child; Female; Humans; Male; symptoms; Pediatrics; Longitudinal Studies; Sleep Stages; Children; adolescent; Pain/etiology; Oncology at EOL; cancer; Cough/etiology; Fatigue/etiology; Eating Disorders/etiology; malignancy; Nausea/etiology; Neoplasms/complications/physiopathology/psychology; symptom distress
The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult version, provided multidimensional information about the symptoms experienced by children with cancer. This instrument was administered to 160 children with cancer aged 10–18 (45 inpatients, 115 outpatients). To confirm the instrument's reliability and validity, additional data about symptoms were collected from both the parents and the medical charts, and retesting was performed on a subgroup of inpatients. Patients could easily complete the scale in a mean of 11 minutes. The analyses supported the reliability and validity of the MSAS 10–18 subscale scores as measures of physical, psychological, and global symptom distress, respectively. Symptom prevalence ranged from 49.7% for lack of energy to 6.3% for problems with urination. The mean (± SD) number of symptoms per inpatient was 12.7 ± 4.9 (range, 4–26), significantly more than the mean 6.5 ± 5.7 (range, 0–28) symptoms per outpatient. Patients who had recently received chemotherapy had significantly more symptoms than patients who had not received chemotherapy for more than 4 months (11.6 ± 6.0 vs. 5.2 ± 5.1), and those patients with solid tumors had significantly more symptoms than patients with either leukemia, lymphoma, or central nervous system malignancies (9.9 ± 7.0 vs. 6.8 ± 5.5 vs. 6.8 ± 5.0 vs. 8.0 ± 6.1). The most common symptoms (prevalence > 35%) were lack of energy, pain, drowsiness, nausea, cough, lack of appetite, and psychological symptoms (feeling sad, feeling nervous, worrying, feeling irritable). Of the symptoms with prevalence rates > 35%, those that caused high distress in more than one-third of patients were feeling sad, pain, nausea, lack of appetite, and feeling irritable. Subscale scores demonstrated large variability in symptom distress and could identify subgroups with high distress. The prevalence, characteristics, and distress associated with physical and psychological symptoms could be quantified in older children with cancer. The data confirm a high prevalence of symptoms overall and the existence of subgroups with high distress associated with one or multiple symptoms. Symptom distress is relatively higher among inpatients, children with solid tumors, and children who are undergoing antineoplastic treatment. Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in clinical chemotherapeutic trials. Symptom epidemiology may also provide a focus for future clinical trials related to symptom management in children with cancer.
2000-05
Collins J J; Byrnes ME; Dunkel IJ; Lapin J; Nadel Traci; Thaler H; Polyak Tanya; Rapkin B; Portenoy RK
Journal Of Pain And Symptom Management
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/S0885-3924(00)00127-5" target="_blank" rel="noreferrer">10.1016/S0885-3924(00)00127-5</a>
Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care
Child; Female; Humans; Male; Palliative Care; Terminally Ill; Adult; Data Collection; Prognosis; Attitude to Death; Regression Analysis; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Parents/psychology; Oncology at EOL; Physicians/psychology; Neoplasms/mortality/therapy
Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.Objectives To evaluate parental understanding of prognosis in children who die of cancer and to assess the association of this factor with treatment goals and the palliative care received by children.Design, Setting, and Participants Survey, conducted between September 1997 and August 1998, of 103 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, and who died of cancer between 1990 and 1997 (72% of those eligible and those located) and 42 pediatric oncologists.Main Outcome Measure Timing of parental understanding that the child had no realistic chance for cure compared with the timing of physician understanding of this prognosis, as documented in the medical record.Results Parents first recognized that the child had no realistic chance for cure a mean (SD) of 106 (150) days before the child's death, while physician recognition occurred earlier at 206 (330) days before death. Among children who died of progressive disease, the group characterized by earlier recognition of this prognosis by both parents and physicians had earlier discussions of hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P = .01), better parental ratings of the quality of home care (OR, 3.31; 95% CI, 1.15-9.54; P = .03), earlier institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P = .02), less use of cancer-directed therapy during the last month of life (OR, 2.80; 95% CI, 1.05-7.50; P = .04), and higher likelihood that the goal of cancer-directed therapy identified by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P = .002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P = .01 for parents).Conclusion Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care.
2000-11
Wolfe J; Klar N; Grier HE; et al
Jama
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/jama.284.19.2469" target="_blank" rel="noreferrer">10.1001/jama.284.19.2469</a>