Utilization of palliative care in pediatric oncology: An interprofessional evaluation of knowledge, beliefs, perceived barriers, and involvement of services
Childhood Cancer; Palliative Therapy; Adolescent; Child; Controlled Study; Data Analysis Software; Diagnosis; Doctor Patient Relation; E-mail; Family; Female; Hematology; Human; Male; Nurse; Pediatrics; Professional Standard
Background: The care of pediatric patients with cancer and their families is complex and evolving. Despite significant advances in outcomes, symptoms of disease and complications of therapy continue to cause pain and other symptoms that could be improvedwith the involvement of pediatric palliative care (PPC) services. The American Academy of Pediatrics (AAP)1 and Institute of Medicine (IOM)2 have published statements and recommendations in support of collaboration with PPC services for all children with serious life-threatening and life-limiting illnesses. Additionally, PPC is recommended as a standard of care in pediatric oncology in addressing the psychosocial needs of children and adolescents with cancer and their families3. Objectives: The overall purpose of this study was to evaluate the knowledge and beliefs of pediatric oncology healthcare providers (HCPs) regarding involvement of PPC and to assess potential barriers that may interfere with its utilization. Additionally, this study evaluated the current involvement of PPC services in pediatric oncology programs that belonged to a statewide hematology alliance in a large Midwestern state. Design/Method: A cross sectional, descriptive survey design guided data collection and analysis. A survey consisting of 30 questions evaluated demographic factors, institutional resources, beliefs, perceived barriers, and current utilization practices. The Qualtrics survey was distributed via email. Data were collected from 156 HCPs (nurses, advanced practice professionals, and physicians). Analysis was completed using IBM SPSS version 24. Results: Significant variability was noted in perspectives regarding PPC and utilization when comparing respondents from various professional roles, practice environments, and among those with different education and professional experience. Over 99% of respondents stated that involving PPC benefits children, however 56% reported PPC was involved "never" or "rarely" in the care of oncology patients. The leading indications for PPC involvement were consistent with advanced disease, occurring late in the trajectory, rather than upon diagnosis as recommended. The influence of practice environments was identified in this study, with free-standing children's hospitals reporting fewer barriers and increased involvement of PPC services. Conclusion: Although progress has been made, care delivered is still not congruent with the recommendations of the AAP and IOM. Knowledge gained from this study emphasizes the important role for all HCPs in advocating for support of PPC programs, education of the public, and commitment to the involvement of PPC services while caring for pediatric oncology patients.
Diver J; Prince-Paul M; Toly V; Bell C
Pediatric Blood And Cancer
2017
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).
<a href="http://doi.org/10.1002/pbc.26591" target="_blank" rel="noreferrer">10.1002/pbc.26591</a>
Use of opioids in palliative care of children with advanced cancer
Advanced Cancer; Childhood Cancer; Opiate/dt [drug Therapy]; Palliative Therapy; 52-26-6 (morphine); 57-27-2 (morphine); 8002-76-4 (opiate); 8008-60-4 (opiate); 53663-61-9 (opiate); Adjuvant; Analgesia; Article; Child; Constipation; Diagnosis; Drug Efficacy; Drug Safety; Female; Human; Major Clinical Study; Male; Medical Record; Morphine; Morphine/dt [drug Therapy]; Nonsteroid Antiinflammatory Agent; Nonsteroid Antiinflammatory Agent/dt [drug Therapy]; Pain/dt [drug Therapy]; Pain Intensity; Retrospective Study; School Child; Sedation; Visual Analog Scale
Introduction Despite advances in the treatment of cancer in paediatric patients, 15% of children die from the illness progression in Chile, and pain is the most significant symptom in advanced stages. Although the World Health Organization guidelines demonstrate that opioids are fundamental in pain management, there is still resistance to their use. The main objective of this article was to describe the experience in the use of opioids for pain management in paediatric patients with advanced cancer in palliative care (PC). Patients and method Retrospective study of patients admitted into the PC Program at the Hospital Roberto del Rio between 2002 and 2013. Analysis was carried out on demographic data; oncological diagnosis; pain intensity on admission and discharge, according to validated scales; use of non-steroidal anti-inflammatory drugs; weak opioids; strong opioids; adjuvants drugs; the presence of secondary effects resulting from the use of morphine, and the need for palliative sedation. Results Of the 99 medical records analysed, the median age was 8 years, 64.6% were male, and there was a similar distribution in three oncological diagnosis groups. Upon admission, 43.4% presented intense to severe pain, and upon discharge there were four patients, but with a maximum VAS score of 7 in only one case. Of the 66 patients taking strong opioids, 89% required less than 0.5 mg/kg/hr. Constipation was the most frequently observed secondary effect. Conclusions Two thirds of the patients studied required strong opioids, with which adequate pain management was achieved, with no serious complications observed. The use of opioids in this group of patients, following a protocol, is considered effective and safe. Copyright _ 2015 Sociedad Chilena de Pediatria. Published por Elsevier Espana.
Fernandez Urtubia B; Trevigno Bravo A; Rodriguez Zamora N; Palma Torres C; Cid Barria L
Revista Chilena De Pediatria
2016
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<a href="http://doi.org/10.1016/j.rchipe.2015.10.006" target="_blank" rel="noreferrer">10.1016/j.rchipe.2015.10.006</a>
Tumor Talk and Child-Well Being: Perceptions of "good" and "bad" news among parents of children with advanced cancer
CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives. METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items. RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life. CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.
Feraco AM; Dussel V; Orellana L; Kang TI; Geyer JR; Rosenberg AR; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
2017
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<a href="http://doi.org/10.1016/j.jpainsymman.2016.11.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.11.013</a>
The suffering in silence of older parents whose child died of cancer: A qualitative study
Aged; Aged 80 and over; Attitude to Death; Female Grief; Grounded Theory; Guilt; Humans; Life Change Events; Loneliness; Male; Middle Aged; Neoplasms/psychology; Parents/psychology; Qualitative Research Stress Psychological
As life expectancy grows, the death of an adult child becomes a highly prevalent problem for older adults. The present study is based on nine interviews and explores the experience of parents (≥70 years) outliving an adult child. The bereaved parents described some silencing processes constraining their expression of grief. When an adult dies, the social support system nearly automatically directs its care towards the bereaved nuclear family. Parental grief at old age is therefore often not recognized and/or acknowledged. Health care providers should be sensitive to the silent grief of older parents both in geriatric and oncology care settings.
Van Humbeeck L; Dillen L; Piers R; Grypdonck M; Van Den Noortgate N
Critical Care Medicine
2016
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<a href="http://doi.org/10.1080/07481187.2016.1198942" target="_blank" rel="noreferrer">10.1080/07481187.2016.1198942</a>
The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience
Developing Countries; Intensive Care Units; Academic Medical Centers; Adolescent; Cancer Care Facilities; Child; Critical Illness; Female; Hematologic Neoplasms/complications/ Mortality/therapy; Humans; Infant; Male; Multiple Organ Failure/etiology; Pediatric; Preschool; Prognosis; Respiratory Insufficiency/etiology; Retrospective Studies; Sepsis/etiology; Tertiary Care Centers; Treatment Outcome
INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology patients is increasing. However, studies demonstrating their outcome in the literature are still deficient, especially in developing countries. Here, we aim to report our experience in managing patients admitted to the pediatric intensive care unit (PICU) at South Egypt Cancer Institute, a tertiary university oncology center in a developing country. PATIENTS AND METHODS: A review of all cancer patients admitted to the PICU at South Egypt Cancer Institute between January 2007 and December 2011 and an evaluation of prognostic factors that may correlate to their short-term outcome were performed. RESULTS: A total of 550 pediatric oncology patients were admitted to the PICU on 757 occasions. Hematological malignancies represented 73.6% of the cases. The median duration of PICU stay was 5 days. Sepsis and respiratory failure were the most frequent indications for PICU admission. The overall survival at the time of discharge from the PICU was 60%. Several factors were found to significantly affect the outcome of patients admitted to the PICU, including the underlying disease, the reason for admission, the intervention used, and the number of failing organs at the time of admission to the PICU. CONCLUSIONS: The prognosis of patients admitted to the PICU in developing countries is still behind those in developed ones. Late referral, especially of patients presenting with respiratory failure, sepsis, and multiorgan failure usually, requires urgent intervention with inotropic support, oxygen therapy, and mechanical ventilation and is significantly associated with poor outcomes, especially in patients with hematological malignancies.
Ali AM; Sayed HA; Mohammed MM
Journal Of Pediatric Hematology/oncology
2016
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<a href="http://doi.org/10.1097/mph.0000000000000523" target="_blank" rel="noreferrer">10.1097/mph.0000000000000523</a>
The Global Champion for End-of-Life Care: Who Are You? What Is Keeping You?
Global Health; Oncology Nursing; Humans; Terminal Care/ Organization & Administration
Hinds PS; Lafond DA
Cancer Nursing
2016
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<a href="http://doi.org/10.1097/ncc.0000000000000328" target="_blank" rel="noreferrer">10.1097/ncc.0000000000000328</a>
The development, testing, and preliminary feasibility of an adaptable pediatric oncology nutrition algorithm for low-middle income countries
Fleming CAK; Viani K; Murphy A; Mosby T; Arora B; Schoeman J; Ladas E
Indian Journal Of Cancer
2015
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<a href="http://doi.org/10.4103/0019-509X.175834" target="_blank" rel="noreferrer">10.4103/0019-509X.175834</a>
The characteristics of family members about utilization of hospice palliative care in terminal cancer patients
Hwang SW
Supportive Care In Cancer
2017
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<a href="http://doi.org/10.1007/s00520-017-3704-x" target="_blank" rel="noreferrer">10.1007/s00520-017-3704-x</a>
The bereavement experience of adolescents and early young adults with cancer: Peer and parental loss due to death is associated with increased risk of adverse psychological outcomes
BACKGROUND: Adolescents commonly experience loss due to death, and perceived closeness to the deceased can often increase the intensity of bereavement. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature. METHODS AND FINDINGS: This analysis of bereavement sought to describe the prevalence and types of losses, the support following a death, and the impact of loss on AeYAs aged 13-21 years with malignant disease (or a hematologic disorder requiring allogeneic transplant). Participants were receiving active oncologic therapy or had completed therapy within the past 3 years. Participants completed a bereavement questionnaire and inventories on depression, anxiety, and somatization. The cross-sectional study enrolled 153 AeYAs (95% participation), most (88%) of whom had experienced a loss due to death. The most commonly reported losses were of a grandparent (58%) or friend (37%). Peer deaths were predominantly cancer related (66%). Many participants (39%) self-identified a loss as "very significant." As loss significance increased, AeYAs were more likely to report that it had changed their life "a lot/enormously" (P<0.0001), that they were grieving "slowly or never got over it" (P<0.0001), and that they felt a need for more professional help (P = 0.026). Peer loss was associated with increased risk of adverse psychological outcomes (P = 0.029), as was parental loss (P = 0.018). CONCLUSIONS: Most AeYAs with serious illness experience the grief process as slow or ongoing. Peer or parental loss was associated with increased risk of negative mental health outcomes. Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness.
Johnson LM; Torres C; Sykes A; Gibson DV; Baker JN
Plos One
2017
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<a href="http://doi.org/10.1371/journal.pone.0181024" target="_blank" rel="noreferrer">10.1371/journal.pone.0181024</a>
Self-assessment for competency and educational needs among pediatric resident on end-of-life care
Education; Resident; Terminal Care; 8002-76-4 (opiate); 8008-60-4 (opiate); 53663-61-9 (opiate); Adjuvant; Aged; Child; Clinical Study; Comfort; Communication Skill; Delirium; Drug Withdrawal; Dyspnea; Feeding; Hospice; Human; Hydration; Opiate; Patient Referral; Symptom; Unclassified Drug; Very Elderly
Purpose: There is lack of standardized resident' curriculum or training for the rapidly emerging field of pediatric end of life care. Goal: To assess pediatric residents' perception of their clinical competence with end of life care and their education needs. To identify an opportunity for improving residents' education and training. Methods: End of life resident assessment survey published by D Weissman was used for evaluation. The survey is divided into 2 domains: clinical competency and education needs. Each domain is subdivided into communication skills and symptom management section. Results: Twenty pediatric residents returned the survey, 8 PGY1, 4 PGY2, and 8 PGY3. PGY1 reported the lowest average score (2.56 of 4), with improving score as we moved to PGY3 (3.1 of 4). Regarding competence with domain of communication skills, they reported significantly lower average score 58% compared to 69% for symptoms management (P < .5). The lowest percentage score among all residents was in discussing home hospice referral 52%, followed by the shift from curative to comfort care and withdrawal of support 54%, then DNR 55%. They felt more competent in giving bad news 72% and best in talking to children in age appropriate manner 91%. This was supported by the high percentage (83%) request of education in those areas. For the symptom management domain, the lowest percentage score among all residents was in management of terminal delirium (40%), followed by terminal dyspnea (48%), using adjuvant analgesics (68%) while they felt comfortable with using opioid analgesic (85%). The highest requested education was for the areas of managing delirium (82%) and dyspnea (81%), followed by hydration and feeding at end of life (68%). Conclusions: There is a major gap in the resident self-assessment in end of life communication skills and symptoms management. This present an improvement opportunity that can translate into better care for children at end of life.
Phung B; Soliman A; Mohamed A
Psycho-oncology
2017
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<a href="http://doi.org/10.1002/pon.4354" target="_blank" rel="noreferrer">10.1002/pon.4354</a>
Role of general practitioners in palliative care for children with cancer
Cancer Palliative Therapy; Childhood Cancer; General Practitioner; Article; Human
Dees M
Huisarts En Wetenschap
2017
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<a href="http://doi.org/10.1007/s12445-017-0199-0" target="_blank" rel="noreferrer">10.1007/s12445-017-0199-0</a>
Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions
BACKGROUND: Adolescents living with incurable cancer require ongoing support to process grief, emotions, and information as disease progresses including treatment options (phase 1 clinical trials and/or hospice/palliative care). Little is known about how adolescents become ready for such discussions. OBJECTIVE: The purpose of this study was to explore the process of adolescent readiness for end-of-life preparedness discussions, generating a theoretical understanding for guiding clinical conversations when curative options are limited. METHODS: We explored 2 in-depth cases across time using case-study methodology. An a priori conceptual model based on current end-of-life research guided data collection and analysis. Multiple sources including in-depth adolescent interviews generated data collection on model constructs. Analysis followed a logical sequence establishing a chain of evidence linking raw data to study conclusions. Synthesis and data triangulation across cases and time led to theoretical generalizations. Initially, we proposed a linear process of readiness with 3 domains: a cognitive domain (awareness), an emotional domain (acceptance), and a behavioral domain (willingness), which preceded preparedness. RESULTS: Findings led to conceptual model refinement showing readiness is a dynamic internal process that interacts with preparedness. Current awareness context facilitates the type of preparedness discussions (cognitive or emotional). Furthermore, social constraint inhibits discussions. CONCLUSIONS: Data support theoretical understanding of the dynamism of readiness. Future research that validates adolescent conceptualization will ensure age-appropriate readiness representation. IMPLICATIONS FOR PRACTICE: Understanding the dynamic process of readiness for engaging in end-of-life preparedness provides clinician insight for guiding discussions that facilitate shared decision making and promote quality of life for adolescents and their families.
Bell CJ; Zimet GD; Hinds PS; Broome ME; McDaniel AM; Mays RM; Champion VL
Cancer Nursing
2017
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<a href="http://doi.org/10.1097/ncc.0000000000000465" target="_blank" rel="noreferrer">10.1097/ncc.0000000000000465</a>
Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center
African Continental Ancestry Group; Cancer Care Facilities; Decision Making; European Continental Ancestry Group; Pediatrics; Resuscitation Orders; Terminal Care; Adolescent; Child; Female; Humans; Infant; Male; Medical Audit; Preschool; United States
BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white. RESULTS: We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.
Baker JN; Rai S; Liu W; Srivastava K; Kane JR; Zawistowski CA; Burghen EA; Gattuso JS; West N; Althoff J; Funk A; Hinds PS
Journal Of Palliative Medicine
2009
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<a href="http://doi.org/10.1089/jpm.2008.0172" target="_blank" rel="noreferrer">10.1089/jpm.2008.0172</a>
Preferences of advanced cancer patients for communication on anticancer treatment cessation and the transition to palliative care
Advanced Cancer; Cancer Patient; Cancer Therapy; Female; Male; Palliative Therapy; Cancer Localization; Child; Diagnosis; Distress Syndrome; Doctor Patient Relation; Human; Life Expectancy; Major Clinical Study; Medical Record; Multiple Regression; Paternalism; Symptom
The aim of this study was to clarify advanced cancer patients' communication preferences regarding ending anticancer treatment and transitioning to palliative care, and to explore variables associated with these preferences. Participants were 106 Japanese cancer patients who had been informed at least 1 week earlier of the cessation of their anticancer treatment. They completed a survey measuring their preferences for communication about ending anticancer treatment and transitioning to palliative care, as well as their demographic characteristics. Medical records were also examined to investigate medical characteristics. Results of the descriptive analysis indicated that patients strongly preferred their physicians to listen to their distress and concerns (96%), assure them that their painful symptoms would be controlled (97.1%), and explain the status of their illness and the physical symptoms that would likely occur in the future (95.1%). Multiple regression analyses indicated the factors associated with these preferences: telling patients to prepare mentally, and informing them of their expected life expectancy, was associated with cancer site; sustaining hope was associated with cancer site and children; and empathic paternalism was associated with duration since cancer diagnosis. The majority of patients preferred their physicians to be realistic about their likely future and to be reassured that their painful symptoms would be controlled. For patients with certain cancer sites, those with children, and those more recently diagnosed, physicians should communicate carefully and actively by providing information on life expectancy and mental preparation, sustaining hope, and behaving as empathic paternalism.
Umezawa S; Fujimori M; Matsushima E; Kinoshita H; Uchitomi Y
Psycho-oncology
2017
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<a href="http://doi.org/10.1002/pon.4476" target="_blank" rel="noreferrer">10.1002/pon.4476</a>
Practice patterns of palliative radiation therapy in pediatric oncology patients in an international pediatric research consortium
Childhood Cancer/rt [radiotherapy]; Palliative Therapy; Anesthesia; Article; Brain Metastasis; Cancer Patient; Child; Cone Beam Computed Tomography; Conformal Radiotherapy; Electron Therapy; Ependymoma; Ewing Sarcoma; Health Survey; Histopathology; Human; Intensity Modulated Radiation Therapy; Intestine Obstruction; Leukemia; Lymphoma; Major Clinical Study; Malignant Neoplasm; Medulloblastoma; Metastasis; Neuroblastoma; Osteosarcoma; Pain; Primary Tumor; Priority Journal; Proton Therapy; Radiation Dose Fractionation; Radiosensitivity; Re-irradiation; Respiratory Tract Disease; Rhabdomyosarcoma; Spinal Cord Compression; Stereotactic Body Radiation Therapy; Stomach Distension
Background/Objectives: The practice of palliative radiation therapy (RT) is based on extrapolation from adult literature. We evaluated patterns of pediatric palliative RT to describe regimens used to identify opportunity for future pediatric-specific clinical trials. Design/Methods: Six international institutions with pediatric expertise completed a 122-item survey evaluating patterns of palliative RT for patients <=21 years old from 2010 to 2015. Two institutions use proton RT. Palliative RT was defined as treatment with the goal of symptom control or prevention of immediate life-threatening progression. Results: Of 3,225 pediatric patients, 365 (11%) were treated with palliative intent to a total of 427 disease sites. Anesthesia was required in 10% of patients. Treatment was delivered to metastatic disease in 54% of patients. Histologies included neuroblastoma (30%), osteosarcoma (18%), leukemia/lymphoma (12%), rhabdomyosarcoma (12%), medulloblastoma/ependymoma (12%), Ewing sarcoma (8%), and other (8%). Indications included pain (43%), intracranial symptoms (23%), respiratory compromise (14%), cord compression (8%), and abdominal distention (6%). Sites included nonspine bone (35%), brain (16% primary tumors, 6% metastases), abdomen/pelvis (15%), spine (12%), head/neck (9%), and lung/mediastinum (5%). Re-irradiation comprised 16% of cases. Techniques employed three-dimensional conformal RT (41%), intensity-modulated RT (23%), conventional RT (26%), stereotactic body RT (6%), protons (1%), electrons (1%), and other (2%). The most common physician-reported barrier to consideration of palliative RT was the concern about treatment toxicity (83%). Conclusion: There is significant diversity of practice in pediatric palliative RT. Combined with ongoing research characterizing treatment response and toxicity, these data will inform the design of forthcoming clinical trials to establish effective regimens and minimize treatment toxicity for this patient population.
Rao AD; Chen Q; Ermoian RP; Alcorn SR; Figueiredo MLS; Chen MJ; Dieckmann K; MacDonald SM; Ladra MM; Kobyzeva D; Nechesnyuk AV; Nilsson K; Ford EC; Winey BA; Villar RC; Terezakis SA
Pediatric Blood And Cancer
2017
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<a href="http://doi.org/10.1002/pbc.26589" target="_blank" rel="noreferrer">10.1002/pbc.26589</a>
Pediatric palliative oncology: Bridging silos of care through an embedded model
Cancer Palliative Therapy; Childhood Cancer; Cancer Diagnosis; Child; Child Health Care; Health Care Access; Health Care Delivery; Health Care Quality; Home Care; Human; Note; Patient Care; Priority Journal
Kaye EC; Snaman JM; Baker JN
Journal Of Clinical Oncology
2017
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<a href="http://doi.org/10.1200/JCO.2017.73.1356" target="_blank" rel="noreferrer">10.1200/JCO.2017.73.1356</a>
Pediatric Palliative Care-A Shared Priority
Mack JW
Jama Oncology
2017
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<a href="http://doi.org/10.1001/jamaoncol.2017.0351" target="_blank" rel="noreferrer">10.1001/jamaoncol.2017.0351</a>
Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology
Importance: Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. Objective: To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs. Design, Setting, and Participants: Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate). Main Outcomes and Measures: Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results. Results: Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001). Conclusions and Relevance: Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.
Levine DR; Mandrell BN; Sykes A; Pritchard M; Gibson D; Symons HJ; Wendler D; Baker JN
Jama Oncology
2017
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).
<a href="http://doi.org/10.1001/jamaoncol.2017.0368" target="_blank" rel="noreferrer">10.1001/jamaoncol.2017.0368</a>
Patient-reported outcomes in end-of-life research in pediatric oncology
Attitude To Death; Neoplasms/px [psychology]; Neoplasms/th [therapy]; Attitude To Health; Child; Hospice Care; Humans; Palliative Care; Quality Of Life
OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at end of life. METHODS: Key terms including "pediatric or child and oncology or cancer and end of life or palliative or hospice or dying" were used with five data bases (PubMed, Ovid, Cochrane, PsycInfo & PsycArticles, and CINAHL) for English language literature published between January, 2001 and June, 2006. All retrieved documents were independently reviewed by a panel of six (nurses, physicians, and one psychologist) with backgrounds in pediatric oncology. RESULTS: Thirty-five publications were identified but nine (25.7%) were eliminated from the analysis as they did not meet inclusion criteria. Of the remaining 26, four (15.4%) included patient-reported outcomes, six (23.1%) included parent only-reported outcomes, and five (19.2%) included staff only-reported outcomes. Nine (34.6%) were retrospective medical record reviews. Two (7.7%) included parent and record review data or parent and physician reports. CONCLUSIONS: Empirically-based end-of-life publications in pediatric oncology are relatively few in number and nearly 85% of completed studies do not include PRO. [References: 43]
Hinds PS; Brandon J; Allen C; Hijiya N; Newsome R; Kane JR
Journal Of Pediatric Psychology
2007
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<a href="http://doi.org/10.1093/jpepsy/jsm004" target="_blank" rel="noreferrer">10.1093/jpepsy/jsm004</a>
Palliative Sedation With Propofol for an Adolescent With a DNR Order
Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method has been called palliative sedation therapy. Palliative sedation therapy is controversial because it can be misunderstood as euthanasia. We present a case in which an adolescent who is dying of leukemia has intractable pain. Experts in oncology, ethics, pain management, and palliative care discuss the trade-offs associated with different treatment strategies.
Johnson Liza-Marie; Frader J; Wolfe J; Baker JN; Anghelescu Doralina L; Lantos JD
Pediatrics
2017
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).
<a href="http://doi.org/10.1542/peds.2017-0487" target="_blank" rel="noreferrer">10.1542/peds.2017-0487</a>
Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions
Communication Skill; Pediatric Nurse Practitioner; Child; Childhood Cancer; Clinical Article; Consensus; Family; Funding; Human; Needs Assessment; Palliative Therapy; Patient Assessment; Pediatrics; Role Playing; Self Evaluation; Training
Communication between pediatric providers, patients, and their families is a key component of for children with serious illness, with broad implications for patient and family outcomes. Recommendations for effective and compassionate palliative communication in pediatrics are unique because of the 3-way relationship between providers, parents, and growing children, whose emerging autonomy requires special consideration. Memorial Sloan Kettering (MSK) has over 40 pediatric nurse practitioners (PNPs) providing primary oncologic care across outpatient and inpatient oncology settings. MSK's Comskil training program had a decade of experience training pediatric oncology MD fellows, but no program yet existed for the NPs so a needs assessment survey was conducted and a program was developed from 2012 to 2016. Methods: An anonymous, online survey was conducted of the MSK NPs (n = 42) that indicated high interest in training and low-overall confidence in particular targeted palliative care skills in pediatrics. A full training day including didactics, small group role play with feedback from expert facilitator, and peers was developed and conducted for all 42 NPs in 2013. A booster training was developed using novel role play methods to increase engagement, training relevance, and skills uptake based on course evaluations from this training. Results: Booster trainings have been recommended to improve uptake of skills through practice; however, little consensus exists on how and when to do boosters. On the basis of the theory of "active engagement," we designed boosters with custom role play scenarios based on PNP's clinical experiences, then used these in small group role play, after reviewing skills taught at the initial training. Standardized patient assessments, course evaluations and self-assessments pretraining, 2 weeks posttraining, and 6 months posttraining were conducted. Conclusions: Pediatric NPs working with children with serious illness benefit from palliative communication focused, pediatric-specific communication skills training. Nurse practitioner preferences, selfassessment, and skills' uptake outcomes will be discussed. Funding: Kanarek Family Foundation.
Kearney J
Psycho-oncology
2017
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<a href="http://doi.org/10.1002/pon.4353" target="_blank" rel="noreferrer">10.1002/pon.4353</a>
Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care in Adolescent and Young Adult Oncology Patients
adolescents; end of life; palliative care; pediatrics; young adult
BACKGROUND: Adolescent and young adult oncology (AYAO) patients often receive intensive medical care and experience significant symptoms at the end of life (EOL). OBJECTIVE: This study aimed to describe the characteristics of AYAO patients aged 15-26 years who died as inpatients in a hospital and to compare the illness and EOL experiences of AYAO patients who did and did not receive palliative care (PC). DESIGN AND SETTING: A standardized data extraction tool was used to collect information about demographics, treatment, terminal characteristics, and symptoms during the last month of life (LMOL) for 69 AYAO patients who died while hospitalized between 2008 and 2014. MEASUREMENTS AND RESULTS: AYAO patients who died in the hospital required considerable medical and psychosocial care and experienced numerous symptoms during the LMOL. Compared to those patients who received no formal PC services, patients followed by the PC team were less likely to die in the intensive care unit (ICU) (38% vs. 68%, p = 0.024) and less likely to have been on a ventilator (34% vs. 63%, p = 0.028) during the LMOL. They also received fewer invasive medical procedures during the LMOL (median, 1 vs. 3 procedures, p = 0.009) and had a do not resuscitate order in place for a longer time before death (median, 6 vs. two days, p = 0.008). CONCLUSIONS: Involvement of the PC team was associated with the receipt of less intensive treatments and fewer deaths in the ICU.
Snaman JM; Kaye EC; Lu JJ; Sykes A; Baker JN
Journal Of Palliative Medicine
2017
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<a href="http://doi.org/10.1089/jpm.2016.0451" target="_blank" rel="noreferrer">10.1089/jpm.2016.0451</a>
Non-pharmacological interventions for management of fatigue among children with cancer: systematic review of existing practices and their effectiveness
Cancer; Children; Complementary Therapy; Fatigue; Non-pharmacological
OBJECTIVES: Fatigue is common among children living with cancer, particularly in advance stages. Little is known about the effectiveness of non-pharmacological approaches to manage this complex and distressing symptom among children. Thus, the present paper aim to critically examine the effectiveness and setting for non-pharmacological interventions to manage fatigue among children with cancer. METHODS: Six electronic databases were screened first in February 2013 and at second instance in March 2015. They include PsycINFO, Medline, EMBASE, CINAHL, Scopus and Cochrane library. All databases were systematically searched for literature on fatigue and cancer, limited to children (as age group) and English language. RESULTS: 1498 articles were identified, of which six were reviewed. Three types of interventions for managing fatigue were identified including (1) complementary and alternative medicine (healing touch/massage therapy), (2) exercise-based interventions and (3) nursing-based interventions. Most interventions were delivered during active treatment and in hospital settings where parents were involved to optimise participation. Despite fatigue scores being lower among intervention groups, no study findings were observed as being statistically significant. CONCLUSION: Fatigue is common among children treated for and living with cancer. The most appropriate setting to deliver non-pharmacological interventions to manage fatigue appears to be in hospital. However, in absence of any strong evidence, professionals need to be cautious about existing non-pharmacological interventions. Future research must adopt more rigorous research designs that are adequately powered using validated measures to identify potential benefits. In addition, researchers may wish to test psychosocial interventions shown to be of benefit in adults.
Bhardwaj T; Koffman J
Bmj Supportive Palliative Care
2017
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<a href="http://doi.org/10.1136/bmjspcare-2016-001132" target="_blank" rel="noreferrer">10.1136/bmjspcare-2016-001132</a>
Metronomics during palliative care in paediatric oncology? For sure! But handle me with care
Administration; Neoplasms/dt [drug Therapy]; Child; Humans; Metronomic; Palliative Care/mt [methods]
Andre N; Pasquier E
Acta Paediatrica
2016
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<a href="http://doi.org/10.1111/apa.13365" target="_blank" rel="noreferrer">10.1111/apa.13365</a>
Metronomic therapy can increase quality of life during paediatric palliative cancer care, but careful patient selection is essential
Neoplasms/dt [drug Therapy]; Palliative Care; Patient Selection; Quality Of Life; Administration; Child; Female; Humans; Karnofsky Performance Status; Male; Metronomic; Neoplasms/mo [mortality]; Prospective Studies
AIM: Children with refractory or high-risk malignancies frequently suffer from poor quality of life during palliative care. This study explored the effect of metronomic drug administration on survival and quality of life in paediatric patients with various refractory or high-risk tumours. METHODS: We treated 17 patients with a maintenance therapy that consisted of metronomic thalidomide, etoposide and celecoxib. The endpoints of the study were overall and progression-free survival, changes in the Karnofsky-Lansky scores from baseline to the end of the study therapy and radiological responses. RESULTS: The median overall survival after the start of the study therapy was 6.2 months (range 2.0-57.7), and the six-, 12- and 24-month survival rates were 59%, 18% and 18%, respectively. The median progression-free survival was 3.2 months (range 0.3-17.8). The Karnofsky-Lansky scores increased significantly during the study therapy (p = 0.02), with 35% of the patients having a transient improvement in their clinical status. Radiologically, one partial response and two disease stabilisations were encountered. Grade III-V adverse events occurred in 76% of the patients. CONCLUSION: Metronomic therapy may increase the quality of life during palliative care for childhood cancer, but requires careful patient selection to minimise the risk of serious adverse events. Copyright _2016 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
Porkholm M; Toiviainen-Salo S; Seuri R; Lonnqvist T; Vepsalainen K; Saarinen-Pihkala UM; Pentikainen V; Kivivuori SM
Acta Paediatrica
2016
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<a href="http://doi.org/10.1111/apa.13338" target="_blank" rel="noreferrer">10.1111/apa.13338</a>
Methylnaltrexone for Opioid-Induced Constipation in Children and Adolescents and Young Adults with Progressive Incurable Cancer at the End of Life
Flerlage JE; Baker JN
Journal Of Palliative Medicine
2015
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<a href="http://doi.org/10.1089/jpm.2014.0364" target="_blank" rel="noreferrer">10.1089/jpm.2014.0364</a>
Medical marijuana in pediatric oncology: A review of the evidence and implications for practice
Medical Marijuana; Pediatric Oncology; Supportive Care
Medical marijuana (MM) has become increasingly legal at the state level and accessible to children with serious illness. Pediatric patients with cancer may be particularly receptive to MM, given purported benefits in managing cancer-related symptoms. In this review, we examine the evidence for MM as a supportive care agent in pediatric oncology. We describe the current legal status of MM, mechanism of action, common formulations, and potential benefits versus risks for pediatric oncology patients. We offer suggestions for how providers might approach MM requests. Throughout, we comment on avenues for future investigation on this growing trend in supportive care.
Ananth P; Reed-Weston A; Wolfe J
Pediatric Blood And Cancer
2017
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<a href="http://doi.org/10.1002/pbc.26826" target="_blank" rel="noreferrer">10.1002/pbc.26826</a>
Influence of early phase clinical trial enrollment on patterns of end-of-life care for children with advanced cancer
Advanced Cancer; Female; Male; Terminal Care; Child; Childhood Cancer; Clinical Trial; Cohort Analysis; Controlled Study; Death; Health Care Utilization; Human; Major Clinical Study; Palliative Therapy
We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010-2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end-of-life care (EOLC) differed between patients enrolled in early phase clinical trials (EP) and those not enrolled (NEP). Baseline characteristics and healthcare utilization did not significantly differ between groups. EP patients received PPC consultation closer to death than NEP patients (median days before death = 58 [interquartile range = 16-84] vs. 85 [32-173]; P = 0.04). Our findings suggest that early phase trial enrollment does not substantially alter EOLC for children with advanced cancer but may contribute to later PPC engagement. Future studies should definitively assess the relationship between trial enrollment and PPC timing.
Ananth P; Monsereenusorn C; Ma C; Al-Sayegh H; Wolfe J; Rodriguez-Galindo C
Pediatric Blood And Cancer
2017
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<a href="http://doi.org/10.1002/pbc.26748" target="_blank" rel="noreferrer">10.1002/pbc.26748</a>
Improving the Quality of End-of-Life Care in Pediatric Oncology Patients Through the Early Implementation of Palliative Care
Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care during the terminal phase. The guiding principles behind offering palliative care to pediatric oncology patients are the prioritization of providing holistic care and management of disease-based symptoms. Pediatric hematology-oncology nurses and clinicians have a unique responsibility to support the patient and family unit and foster a sense of hope, while also preparing the family for the prognosis and a challenging treatment trajectory that could result in the child's death. In order to alleviate potential suffering the child may experience, there needs to be an emphasis on supportive care and symptom management. There are barriers to implementing palliative care for children with cancer, including the need to clarify the palliative care philosophy, parental acknowledgement and acceptance of a child's disease and uncertain future, nursing awareness of services, perception of availability, and a shortage of research guidance. It is important for nurses and clinicians to have a clear understanding of the fundamentals of palliative and end-of-life care for pediatric oncology patients to receive the best care possible.
Ranallo L
Journal Of Pediatric Oncology Nursing
2017
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<a href="http://doi.org/10.1177/1043454217713451" target="_blank" rel="noreferrer">10.1177/1043454217713451</a>
Human suffering: the need for relationship-based research in pediatric end-of-life care
Interpersonal Relations; Neoplasms/co [complications]; Nursing Research/og [organization & Administration]; Oncology Nursing/og [organization & Administration]; Pediatric Nursing/og [organization & Administration]; Psychology; Stress; Terminal Care; Adaptation; Child; Health Services Needs And Demand; Humans; Psychological; Psychological/et [etiology]; Psychological/nu [nursing]; Psychological/px [psychology]; Quality Of Life; Sick Role; Social Support; Spirituality; Stress; Terminal Care/og [organization & Administration]; Terminal Care/px [psychology]
Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being. [References: 29]
Kane JR; Hellsten MB; Coldsmith A
Journal Of Pediatric Oncology Nursing
2004
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<a href="http://doi.org/10.1177/1043454204264393" target="_blank" rel="noreferrer">10.1177/1043454204264393</a>
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
Cancer Epidemiology; General Practitioner; Palliative Therapy; Child; Controlled Study; Cross-sectional Study; Death; Distress Syndrome; Doctor Patient Relation; Fatigue; Human; Human Versus Animal Comparison; Major Clinical Study; Nonhuman; Pain; Panic; Powerlessness; Questionnaire; Sadness; Symptom; Thermometer
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. Objectives: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. Methods: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). Results: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. Conclusion: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death. Copyright _ 2017 American Academy of Hospice and Palliative Medicine.
van der Geest IMM; Bindels PJE; Pluijm SMF; Michiels EMC; van der Heide A; Pieters R; Darlington ASE; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
2017
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<a href="http://doi.org/10.1016/j.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.09.012</a>
GPs and paediatric oncology palliative care: a Q methodological study
Bereavement; Cancer; General Practitioner; Home Care; Paediatrics; Terminal Care
OBJECTIVE: This mixed-methods study set in the West Midlands region of the UK demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care. METHODS: Using data obtained from the analysis of semistructured interviews with GPs who had cared for a child receiving palliative care at home and bereaved parents, 50 statements were identified as representative of the analysis findings. 32 GPs with a non-palliative child with cancer on their caseload were asked to rank the statements according to their level of agreement/disagreement on a grid. They were then asked to reflect and comment on the statements they most and least agreed with. The data were analysed using a dedicated statistical software package for Q analysis PQMethod V.2.20 (Schmolck 2012). A centroid factor analysis was undertaken initially with 7 factors then repeated for factors 1-6. Varimax and manual flagging was then completed. RESULTS: 4 shared viewpoints were identified denoting different GP roles: the GP, the compassionate practitioner, the team player practitioner and the pragmatic practitioner. In addition consensus (time pressures, knowledge deficits, emotional toll) and disagreement (psychological support, role, experiential learning, prior relationships) between the viewpoints were identified and examined. CONCLUSIONS: Q methodology, used for the first time in this arena, identified 4 novel and distinct viewpoints reflecting a diverse range of GP perspectives. Appropriately timed and targeted GP education, training, support, in conjunction with collaborative multiprofessional working, have the potential to inform their role and practice across specialities.
Neilson S; Gibson F; Jeffares S; Greenfield SM
Bmj Supportive Palliative Care
2017
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<a href="http://doi.org/10.1136/bmjspcare-2015-000852" target="_blank" rel="noreferrer">10.1136/bmjspcare-2015-000852</a>
Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study
Neoplasms/th [therapy]; Palliative Care; Adolescent; Child; Feasibility Studies; Female; Humans; Longitudinal Studies; Male; Palliative Care/mt [methods]; Patient Dropouts; Patient Selection; Pilot Projects; Preschool; Terminal Care
CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate. RESULTS: Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate. CONCLUSION: A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life. Copyright _ 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Dussel V; Orellana L; Soto N; Chen K; Ullrich C; Kang TI; Geyer JR; Feudtner C; Wolfe J
Journal Of Pain & Symptom Management
2015
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<a href="http://doi.org/10.1016/j.jpainsymman.2014.12.010" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2014.12.010</a>
Experiences of Parents and General Practitioners with End-of-Life Care in Adolescents and Young Adults with Cancer
Kaal SEJ; Kuijken NMJ; Verhagen CAHHVM; Jansen R; Servaes P; Van Der Graaf WTA
Journal Of Adolescent And Young Adult Oncology
2016
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<a href="http://doi.org/10.1089/jayao.2015.0009" target="_blank" rel="noreferrer">10.1089/jayao.2015.0009</a>
Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis
To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.
Ngwenya N; Kenten C; Jones L; Gibson F; Pearce S; Flatley M; Hough R; Stirling LC; Taylor RM; Wong G; Whelan J
Journal Of Adolescent And Young Adult Oncology
2017
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<a href="http://doi.org/10.1089/jayao.2016.0055" target="_blank" rel="noreferrer">10.1089/jayao.2016.0055</a>
Ethics consultation in pediatrics: long-term experience from a pediatric oncology center
Johnson LM; Church CL; Metzger M; Baker JN
The American Journal Of Bioethics : Ajob
2015
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<a href="http://doi.org/10.1080/15265161.2015.1021965" target="_blank" rel="noreferrer">10.1080/15265161.2015.1021965</a>
End-Of-Life Research as a Priority for Pediatric Oncology
Neoplasms; Nursing Research/og [organization & Administration]; Oncology Nursing/og [organization & Administration]; Pediatric Nursing/og [organization & Administration]; Terminal Care/og [organization & Administration]; Adaptation; Attitude To Death; Child; Decision Making; Family/px [psychology]; Grief; Health Priorities/og [organization & Administration]; Humans; Needs Assessment; Neoplasms/nu [nursing]; Neoplasms/px [psychology]; Psychological; Psychology; Social Support; Survivors/px [psychology]; Terminal Care/px [psychology]
Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer less before they die and their survivors might experience fewer or less intense adverse physical and mental conditions secondary to their bereavement. The focus of this article is on five key areas related to end of life where research is critically needed; (a) the characteristics of cancer-related death and the profiles of survivorship in bereaved family members and health care providers, (b) the trajectory of dying in children and adolescents and a comparison of care delivery preferred by the family and that actually delivered, (c) end-of-life decision making, (d) the financial costs of a child or adolescent dying a cancer-related death and associated policy making, and (e) outcomes of symptom-directed or bereavement interventions. Knowing the characteristics of cancer-related deaths in children and adolescents will help researchers and clinicians develop and test effective interventions related to symptom management, decision making, and availability of care delivery models that match the dying child's needs and preferences. Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors. [References: 26]
Hinds PS; Pritchard M; Harper J
Journal Of Pediatric Oncology Nursing
2004
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<a href="http://doi.org/10.1177/1043454204264386" target="_blank" rel="noreferrer noopener">10.1177/1043454204264386</a>
End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities
Adolescence; Adult; Age Factors; California; Childhood Neoplasms -- Therapy -- California; Confidence Intervals; Death Certificates; Descriptive Statistics; Healthcare Disparities -- California; Hematologic Neoplasms -- Therapy -- California; Hispanics; Hospitalization; Hospital Mortality; Human; Intensive Care Units; Intubation; Minority Groups; Neoplasms -- Therapy -- California; Odds Ratio; Oncologic Care -- California; Race Factors; Readmission; Retrospective Design; Socioeconomic Factors; Terminal Care -- California; Whites; Young Adult
Purpose Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However,the intensity of end-of-life care forAYAdecedents with cancer--especially the effect of care received at specialty versus nonspecialty centers--remains understudied.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Journal Of Oncology Practice
2017
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).
<a href="http://doi.org/10.1200/jop.2016.020586" target="_blank" rel="noreferrer">10.1200/jop.2016.020586</a>
Effect of a group intervention for children and their parents who have cancer
OBJECTIVE: Although support programs for children whose parents have cancer have been described and evaluated, formal research has not been conducted to document outcomes. We adapted a group intervention called CLIMB(R), originally developed in the United States, and implemented it in Tokyo, Japan, for school-aged children and their parents with cancer. The purpose of this exploratory pilot study was to examine the feasibility, acceptability, and impact of the Japanese version of the CLIMB(R) Program on children's stress and parents' quality of life and psychosocial distress. METHODS: We enrolled children and parents in six waves of replicate sets for the six-week group intervention. A total of 24 parents (23 mothers and 1 father) diagnosed with cancer and 38 school-aged children (27 girls and 11 boys) participated in our study. Intervention fidelity, including parent and child satisfaction with the program, was examined. The impact of the program was analyzed using a quasiexperimental within-subject design comparing pre- and posttest assessments of children and parents in separate analyses. RESULTS: Both children and parents experienced high levels of satisfaction with the program. Children's posttraumatic stress symptoms related to a parent's illness decreased after the intervention as measured by the Posttraumatic Stress Disorder-Reaction Index. No difference was found in children's psychosocial stress. The Functional Assessment of Chronic Illness Therapy scores indicated that parents' quality of life improved after the intervention in all domains except for physical well-being. However, no differences were found in parents' psychological distress and posttraumatic stress symptoms. SIGNIFICANCE OF RESULTS: Our results suggest that the group intervention using the CLIMB(R) Program relieved children's posttraumatic stress symptoms and improved parents' quality of life. The intervention proved the feasibility of delivering the program using manuals and training. Further research is needed to provide more substantiation for the benefits of the program.
Kobayashi M; Heiney SP; Osawa K; Ozawa M; Matsushima E
Palliative And Supportive Care
2017
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).
<a href="http://doi.org/10.1017/s1478951516001115" target="_blank" rel="noreferrer">10.1017/s1478951516001115</a>
Disparities in the intensity of end-of-life care for children with cancer
Childhood Cancer; Health Care Disparity; Terminal Care; Adolescent; Adult; Article; Cancer Chemotherapy; Caucasian; Child; Childhood Mortality; Cohort Analysis; Controlled Study; Demography; Female; Hematologic Malignancy; Hemodialysis; Hospital Admission; Hospital Mortality; Human; Infant; Intensive Care Unit; Intubation; Major Clinical Study; Male; Newborn; Population Research; Priority Journal; Resuscitation; Retrospective Study
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had >=1 intensity indicator, 23% >=2, and 22% >=1 intense medical intervention. There was a bimodal association between age and intensity: Ages <5 years and 15 to 21 years was associated with intense care. Patients with hematologic malignancies were more likely to have high-intensity end-of-life care, as were patients from underrepresented minorities, those who lived closer to the hospital, those who received care at a nonspecialty center (neither Children's Oncology Group nor National Cancer Institute Designated Cancer Center), and those receiving care after 2008. CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.
Johnston EE; Alvarez E; Saynina O; Sanders L; Bhatia S; Chamberlain LJ
Pediatrics
2017
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).
<a href="http://doi.org/10.1542/peds.2017-0671" target="_blank" rel="noreferrer">10.1542/peds.2017-0671</a>10.1542/peds.2017-0671