Palliative care is not associated with decreased intensity of care: Results of a chart review from a large children's hospital
children; hospice; oncology; palliative care; pediatrics; treatment intensity
BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates "giving up." This study examined if palliative care involvement was associated with a decreased intensity of care at the end of life for children with malignancy at a large academic center with a well-established palliative care program. PROCEDURE: This is a retrospective chart review that measured intensity of care as the number of emergency department visits, hospital days, and intensive care unit days in the last one and three months of life. The data were compared for patients with and without palliative care involvement and with and without hospice involvement. RESULTS: Palliative involvement was not associated with a decrease in the intensity of care in the last three months of life. Hospice care was associated with a decreased intensity of care. These results held true in analyses adjusted for age at death, gender, and type of malignancy. CONCLUSIONS: These data can reassure patients, families, and providers that palliative involvement does not necessitate decreased intensity of care. Patients and families often choose hospice care to decrease the amount of time spent at the hospital and it was associated with meeting that goal.
Sedig LK; Spruit JL; Southwell J; Paul TK; Cousino MK; McCaffery H; Pituch K; Hutchinson R
Pediatric Blood & Cancer
2021
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<a href="http://doi.org/10.1002/pbc.29391" target="_blank" rel="noreferrer noopener">10.1002/pbc.29391</a>
Patient-controlled analgesia at the end of life at a pediatric oncology institution
opioid analgesics; pain control; Pediatric pain control
2015-07
Anghelescu DL; Snaman JM; Trujillo L; Sykes AD; Yuan Y; Baker JN
Pediatric Blood & Cancer
2015
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Journal Article
<a href="http://doi.org/10.1002/pbc.25493" target="_blank" rel="noreferrer">10.1002/pbc.25493</a>
Evaluation of a pediatric palliative care educational workshop for oncology fellows
2006
Baughcum AE; Gerhardt CA; Young-Saleme T; Stefanik R; Klopfenstein KJ
Pediatric Blood & Cancer
2006
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/pbc.21034" target="_blank" rel="noreferrer">10.1002/pbc.21034</a>
Safety and efficacy of aprepitant for chemotherapy-induced nausea and vomiting in pediatric patients: A prospective, observational study
Pediatric patients between the ages of 12 months and 17 years with a confirmed malignancy who were scheduled to receive aprepitant as part of triple therapy antiemetic prophylaxis for a cycle of moderately- or highly emetogenic chemotherapy were eligible for enrollment. Patients were evaluated for the incidence of nausea, episodes of emesis, interference with activities of daily living (ADLs), and appetite through utilization of a patient survey. Eleven patients were enrolled for a total of 20 patient encounters, mean age 9.55 ± 4.85 (range, 12 months-17 years). Aprepitant was well-tolerated and complete response (CR) rate was 38.9%. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013-12
Bodge M; Shillingburg A; Paul S; Biondo L
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24901" target="_blank" rel="noreferrer">10.1002/pbc.24901</a>
High-risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out
end-of-life care; handoff; hospice; Palliative Care; pediatric oncology; sign out
2018-01
Brock KE; Mullaney E
Pediatric Blood & Cancer
2018
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<a href="http://doi.org/10.1002/pbc.26957" target="_blank" rel="noreferrer">10.1002/pbc.26957</a>
Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor
Child; Female; Humans; Male; Adult; Questionnaires; Italy; Survivors; adolescent; Non-U.S. Gov't; Research Support; PedPal Lit; quality of life; Health Status; Brain Neoplasms/psychology/therapy
BACKGROUND: This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the effectiveness of this measured in terms of their health status (HS) and health-related quality of life (HRQL). It specifically, it aimed to compare the HS and the HRQL, as expressed by the HUI2 global utility score, in cohorts of patients who had brain tumors, extra-cerebral solid tumors, or leukemia/lymphoma. PROCEDURE: Fifty survivors of brain tumors, between 8 and 30 years at the time of the assessment ("self") and/or their parents ("proxy"), attending the Pediatric Oncology Out Patient clinic of Padua, Italy, completed the HUI2 questionnaire. Eighty-nine children with acute leukemia/lymphoma and 74 with extra-cerebral solid tumors and/or their parents were also assessed. RESULTS: The mean "self" and "proxy" HUI2 global utility scores in the brain tumor patients were 0.87 and 0.84, respectively, while in the cohorts of children with other solid tumors and leukemia/lymphoma, there were 0.94, 0.91, 0.96, and 0.92, respectively. The differences between the HUI2 global utility scores in the "self" and "proxy" assessment within each cohort of children were not statistically significant. In decreasing order of frequency, the attributes affected most commonly were: "emotion," "pain," "sensation," and "cognition" both by "self" and "proxy" assessment. CONCLUSIONS: In this Italian population of childhood cancer survivors the HUI2 questionnaire proved to be a user-friendly tool, which provided information regarding HS and HRQL. A larger cohort of cancer children is needed to confirm the efficacy of the HUI2 questionnaire in distinguishing groups of children on this basis by disease category.
2006
Cardarelli C; Cereda C; Masiero L; Viscardi E; Faggin R; Laverda A; Bisogno G; Perilongo G
Pediatric Blood & Cancer
2006
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Journal Article
Development of a quality of life instrument for children with advanced cancer: The pediatric advanced care quality of life scale (PAC-QoL)
quality of life; measure; oncology
BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been developed to address this gap. The current paper describes the first two phases in the development of this measure. PROCEDURES: The first two phases included: (1) construct and item generation, and (2) preliminary content validation. Domains of QoL relevant to this population were identified from the literature and items generated to capture each; items were then adapted to create versions sensitive to age/developmental differences. Two types of experts reviewed the draft PAC-QoL and rated items for relevance, understandability, and sensitivity of wording: bereaved parents (n = 8) and health care professionals (HCP; n = 7). Content validity was calculated using the index of content validity (CVI [Lynn. Nurs Res 1986;35:382-385]). RESULTS: One hundred and forty-one candidate items congruent with the domains identified as relevant to children with advanced malignancies were generated, and four report versions with a 5-choice response scale created. Parent mean scores for importance, understandability, and sensitivity of wording ranged from 4.29 (SD = 0.52) to 4.66 (SD = 0.50). The CVI ranged from 95% to 100%. These steps resulted in reductions of the PAC-QoL to 57-65 items, as well as a modification of the response scale to a 4-choice option with new anchors. CONCLUSIONS: The next phase of this study will be to conduct cognitive probing with the intended population to further modify and reduce candidate items prior to psychometric evaluation. Pediatr Blood Cancer 2014; 61:1840-1845. © 2014 Wiley Periodicals, Inc.
2014-10
Cataudella D; Morley TE; Nesin A; Fernandez CV; Johnston DL; Sung L; Zelcer S
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.25115" target="_blank" rel="noreferrer">10.1002/pbc.25115</a>
Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care
Female; Humans; Male; Palliative Care; Neoplasms; Pediatrics; Adult; Aged; Middle Aged; Health Personnel; Focus Groups; Medical Oncology; Practice; Palliative Care; Attitudes; Health Knowledge
BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for pediatric patients to identify barriers and facilitators that might assist in understanding how care could be improved. PROCEDURES: Pediatric oncology providers were recruited to participate in four focus groups. A proposal for early integration of a pediatric palliative care team (PPCT) was presented and followed by a facilitated discussion. Data were analytically categorized into themes by three independent coders using constant comparative analysis and crystallization techniques. A consensus approach was used to identify final themes. RESULTS: Barriers to the proposed care model of early integration of a PPCT included provider role, conflicting philosophy, patient readiness, and emotional influence and were more prevalent in the physician participants compared to nurse practitioner, nursing, and social work participants. Facilitators included patient eligibility, improved patient care, education, and evidence-based medicine. Though all participants were invested in providing optimal patient care, physician participants believed the current standard of care model is meeting the needs of patients and family, while the nurse practitioner, nursing, and social work participants working on the same healthcare team believed the proposed care model would improve the overall care of children diagnosed with cancer. CONCLUSIONS: Differing perceptions among healthcare providers regarding the care of children with cancer suggest that team functioning could be improved. Avenues for pilot testing early integration of PC could provide useful information for a next study.
2013-11
Dalberg T; Jacob-Files E; Carney PA; Meyrowitz J; Fromme EK; Thomas G
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24673" target="_blank" rel="noreferrer">10.1002/pbc.24673</a>
Fatigue in adolescents with cancer compared to healthy adolescents
adolescent; Female; Humans; Male; Neoplasms; Fatigue; Affect; Depression
BACKGROUND: Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also high in adolescents without cancer, the current study aims to describe fatigue in adolescents with cancer relative to a control group and to identify associates of such fatigue. Knowing this is important for understanding the extent of the problem in adolescents with cancer relative to healthy adolescents and for understanding who is most at risk for fatigue and related distress. PROCEDURE: Adolescents with cancer and their caregivers (n = 102) and adolescents without a history of chronic health conditions and their caregivers (n = 97) completed the Multidimensional Fatigue Scale and measures of depression, quality of life (QoL), affect, coping, and family functioning. RESULTS: Adolescents with cancer and their caregivers reported significantly more adolescent fatigue across all domains (with the exception of adolescent reports of cognitive fatigue) relative to adolescents without chronic health conditions. Higher fatigue was significantly related to adolescent report of more symptoms of depression, poorer QoL, higher negative affect, less positive affect, and behavioral disengagement coping style. Fatigue was not related to active coping or family functioning. CONCLUSIONS: Adolescents with cancer experience significantly more fatigue than peers without chronic health conditions. Reports of fatigue are closely related to multiple indicators of psychosocial well-being, suggesting that fatigue may be an important cancer-related symptom to assess and manage to improve adolescent QoL.
2013-11
Daniel LC; Brumley LD; Schwartz LA
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24706" target="_blank" rel="noreferrer">10.1002/pbc.24706</a>
Methadone analgesia for children with advanced cancer
Methadone
BACKGROUND: Methadone is frequently used in the treatment of adults with advanced cancer. A criticism of relevant research is the use of single or fixed doses, which does not reflect use in clinical practice. Literature about use of methadone in the treatment of pediatric patients is limited to case reports. The objective of this study is to describe methadone use as primary opioid analgesic for advanced pediatric cancer over a 6.5-year period. PROCEDURE: All 17 patients who received methadone as their primary opioid analgesic through the Northern Alberta Children's Cancer Program from January 2000 to June 2007 were included. Children who received combination opioid therapy were excluded. RESULTS: Rotation to methadone was usually by a complete switch from primary opioid. Conversion ratios of morphine equivalent daily dose (MEDD)/methadone daily dose (TMDD) ranged widely from 1:2 in one patient with sudden pain crisis just prior to death, to 60:1 in a patient who had been treated with opioids for months. Methadone was used for a total of 925 patient-days. There were no significant adverse events in any patient, and all but one patient remained on methadone until the time of their death. Clinically, the effectiveness of analgesia clearly improved at time of conversion in 16 patients. CONCLUSION: With close monitoring, methadone therapy can be done safely in pediatric oncology patient populations in both inpatient and outpatient settings. Our experience suggests improvement in analgesia with the use of methadone, with 16 patients remaining on methadone until they died. Pediatr Blood Cancer (c) 2008 Wiley-Liss, Inc.
2008
Davies D; Devlaming D; Haines C
Pediatric Blood & Cancer
2008
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Journal Article
<a href="http://doi.org/10.1002/pbc.21584" target="_blank" rel="noreferrer">10.1002/pbc.21584</a>
Successful use of indwelling tunneled catheters for the management of effusions in children with advanced cancer
Pediatric oncology; ascites; catheters; indwelling; malignant; pleural effusion
Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for management of MPE/MA in children with advanced cancer. Methods Children with MPE/MA who underwent ITC insertion (2007–2012) were retrospectively reviewed. Clinical, procedural, complication and outcome details were analyzed. Results PleurX® ITCs (n = 12) were inserted in eight patients (5–18 years) with sarcoma (11 MPE, 1 MA), achieving symptom relief and facilitating discharge home post ITC (median 2 days). Median survival following ITC was 51 days. There were two major complications: pain (n = 1), late site infection (n = 1), and five minor complications. Drainage ceased in four patients (pleurodesis/tumor progression). At time of death, six ITCs (five patients) were still in situ. Conclusions ITC appears to be a safe, effective treatment for MPE/MA in advanced pediatric cancer, achieving symptomatic relief and discharge home. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
den Hollander BS; Connolly BL; Sung L; Rapoport A; Zwaan Cm; Grant RM; Parra D; Temple MJ
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24902" target="_blank" rel="noreferrer">10.1002/pbc.24902</a>
Comparing pediatric deaths with and without hospice support
Child; Humans; Palliative Care; Terminal Care; Pediatrics; Attitude of Health Personnel; Michigan; quality of life; retrospective studies; hospice care
BACKGROUND: Although pediatric hospice care is commonly accepted as a beneficial intervention, the incremental advantage over end-of-life care delivered without engaging hospice remains unknown. The primary objective of this study was to describe differences in pediatric end-of-life care when delivered with and without hospice support, as perceived by the medical provider. PROCEDURE: A retrospective survey of medical providers was conducted in 2005 over a 2-month period at a single institution, the Helen DeVos Children's Hospital (HDVCH). Medical providers with self-determined experience in pediatric end-of-life care were asked to separately provide positive and negative comments about their experience with hospice. Additionally they were asked to describe differences between children under their supervision who died with and without hospice care. Medical provider comments and comparisons of experiences in caring for children dying with and without hospice involvement are described. RESULTS: Out of 157 responders, 43 reported positive comments about the hospice intervention. Non-medical support and location of death were the most frequently cited benefits. Nineteen responders provided negative comments about hospice; all involving feelings of lost hope, intrusion, or distrust. When asked to directly compare deaths with and without hospice support, 44 of 51 (86%) responders favored hospice. The most cited reason for preferring hospice involvement was better provision of non-medical services. CONCLUSIONS: The majority of pediatric providers in this survey observed an advantage to utilizing hospice care for dying children as compared to providing end-of-life care without hospice involvement.
2010
Dickens DS
Pediatric Blood & Cancer
2010
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Journal Article
<a href="http://doi.org/10.1002/pbc.22413" target="_blank" rel="noreferrer">10.1002/pbc.22413</a>
Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease
adolescent; Child; Female; Humans; infant; Male; Young Adult; Pain; Pain Management; Adult; Analgesics; Prognosis; Follow-Up Studies; Prospective Studies; Critical Pathways; Anemia; Preschool; Arterial Occlusive Diseases; Sickle Cell; Tertiary Care Centers
BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has shown that clinical pathways improve care. The purpose of our study was to determine whether a clinical pathway improves the acute management of sickle cell vaso-occlusive crisis (VOC) pain in the pediatric emergency department (PED). PROCEDURE: Pain management practices were prospectively investigated before and after the initiation of a clinical pathway in the PED of an urban, tertiary care center with 50,000 ED visits per year and approximately 200 active sickle cell patients. The pathway included instructions for triage, monitoring, medication administration, and timing of assessments and interventions. Data were eligible from 35 pre-pathway and 33 post-pathway visits. Primary outcome was time interval to administration of first analgesic medication. Statistical analysis was by Student's t-test, using natural-log-transformed data for outcomes with skewed distribution curves. RESULTS: Time interval to first analgesic improved from 74 to 42 minutes (P = 0.012) and to first opioid from 94 to 46 minutes (P = 0.013). The percentage of patients who received ketorolac increased from 57% to 82% (P = 0.03). Decrease in time interval to subsequent pain score assessment was not statistically significant (110 to 72 minutes (P = 0.07)), and change in pain score was not different (P = 0.25). CONCLUSIONS: The use of a clinical pathway for sickle cell VOC in the PED can improve important aspects of pain management and merits further investigation and implementation.
2014-04
Ender KL; Krajewski JA; Babineau J; Tresgallo M; Schechter W; Saroyan JM; Kharbanda A
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.24864" target="_blank" rel="noreferrer">10.1002/pbc.24864</a>
A Quality Improvement Project to Increase Palliative Care Team Involvement in Pediatric Oncology Patients
oncology; palliative care; pediatric palliative care; refractory cancer
BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for patients with refractory cancer from a baseline median of 13.5 days to ≥30 days between March 2019 and March 2020. METHODS: Outcome measure was days from PPC consult to death; process measure was days from diagnosis to PPC consult. The project team surveyed oncologists to identify barriers. Plan-do-study-act cycles included establishing target diagnoses, offering education, standardizing documentation, and sending reminders. RESULTS: The 24-month baseline period included 30 patients who died and 25 newly diagnosed patients. The yearlong intervention period included six patients who died and 16 newly diagnosed patients. Interventions improved outcome and process measures. Targeted patients receiving PPC ≥30 days prior to death increased from 43% to 100%; median days from consult to death increased from 13.5 to 159.5. Targeted patients receiving PPC within 30 days of diagnosis increased from 28% to 63%; median days from diagnosis to consult decreased from 221.5 to 14. Of those without PPC consult ≤ 30 days after diagnosis, 17% had template documentation of the rationale. CONCLUSION: Interventions utilized met the global aim, outcome, and process measures. Use of QI methodology empowered providers to involve PPC. Poor template use was a barrier to identifying further drivers. Future directions for this project relate to expanding the target list, creating long-term sustainability, formalizing standards, and surveying patients and families.
Farooki S; Olaiya O; Tarbell L; Clark NA; Linebarger JS; Stroh J; Ellis K; Lewing K
Pediatric Blood and Cancer
2020
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<a href="http://doi.org/10.1002/pbc.28804" target="_blank" rel="noreferrer noopener">10.1002/pbc.28804</a>
Longitudinal Understanding of Prognosis among Adolescents with Cancer
Child; Adolescent; Female; Follow-Up Studies; Humans; Male; Parents/psychology; Prognosis; Longitudinal Studies; oncology; Surveys and Questionnaires; Communication; palliative care; psycho-oncology; psychosocial; Neoplasms/pathology/psychology/therapy; Oncologists/psychology
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
Fisher RS; Kenney AE; Fults MZ; Manring S; Rodriguez EM; Desjardins L; Rausch JR; Young-Saleme T; Ranalli MA; Vannatta K; Compas BE; Gerhardt CA
Pediatric Blood and Cancer
2021
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<a href="http://doi.org/10.1002/pbc.28826" target="_blank" rel="noreferrer noopener">10.1002/pbc.28826</a>
Pain management at home in children with cancer: A daily diary study
Pain; Pain Management; Pediatric oncology; daily diary; pain at home
Background With the transition of care of cancer patients from the hospital to the home setting, parents are largely responsible for children's pain management. Children's cancer pain is undermanaged, yet, there is little empirical data on the occurrence and management of cancer pain in the home setting. The purpose of the present study, therefore, was to employ a daily diary protocol to examine barriers to pain management of children's cancer pain by parents at home. Procedure Parent–child dyads were recruited from the Cancer Institute at a major children's hospital in Southern California. A total of 45 patient/parent pairs completed baseline data on demographic and personality characteristics, children's quality of life, and parental beliefs regarding analgesic use for children and then completed daily diaries of pain and analgesic administration for 14 consecutive days. Results Most children were reported to experience chronic pain while undergoing treatment for cancer, yet overall analgesic administration at home was low. Parents who reported misconceptions regarding analgesic use for children were less likely to administer pain medication to children. Children who were less shy, more social, or had lower quality of life were more likely to receive analgesics. Conclusions A significant proportion of children receiving outpatient treatment for cancer were rated as experiencing chronic pain and pain was not optimally managed in the home setting. Further understanding and addressing barriers to children's cancer pain management in the home setting will aid in alleviating unnecessary pain in this vulnerable patient population. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Fortier MA; Wahi A; Bruce C; Maurer EL; Stevenson R
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24907" target="_blank" rel="noreferrer">10.1002/pbc.24907</a>
Integration of a palliative and terminal care center into a comprehensive pediatric oncology department
2008
Golan H; Bielorai B; Grebler D; Israeli Shai; Rechavi G; Toren A
Pediatric Blood & Cancer
2008
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Journal Article
<a href="http://doi.org/10.1002/pbc.21476" target="_blank" rel="noreferrer">10.1002/pbc.21476</a>
Grief reactions and impact of patient death on pediatric oncologists
Pediatric; Grief; emotional well-being; oncologists; patient death
Background To examine pediatric oncologists' grief reactions to patient death, and the impact patient death has on their personal and professional lives. Procedure The grounded theory method was used. Data was collected between March 2012 and July 2012 at two academic centres in Canada. Twenty-one out of 34 eligible pediatric oncologists at different stages of their career were recruited and interviewed about their experiences with patient death. Inclusion criteria were: being able to speak English and having had a patient die in their care. The participants formed three groups of oncologists at different stages of career including: fellows, junior oncologists, and senior oncologists who varied in sub-specialties, gender, and ethnicities. Results Pediatric oncologists reported a range of reactions to patient death including sadness, crying, sleep loss, exhaustion, feeling physically ill, and a sense of personal loss. They also reported self-questioning, guilt, feelings of failure and helplessness. The impact of these deaths had personal consequences that ranged from irritability at home, feeling disconnected from family members and friends, and becoming more desensitized towards death, to gaining a greater and more appreciative perspective on life. Professional impacts included concern about turnover or burnout at work and improving holistic care as a result of patient deaths. Conclusions Grief over patient death and the emotional labour involved in these losses are a robust part of the pediatric oncology workplace and have major impacts on pediatric oncologist's personal and professional lives. Interventions that focus on how to help pediatric oncologists deal with these reactions are needed. Pediatr Blood Cancer © 2014 Wiley Periodicals, Inc.
2014-09
Granek L; Bartels U; Scheinemann K; Labrecque M; Barrera M
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.25228" target="_blank" rel="noreferrer">10.1002/pbc.25228</a>
Integration of a palliative and terminal care center into a comprehensive pediatric oncology department
location of death
BACKGROUND: The sharp division between curative cancer therapy and palliative care results in the late introduction of palliative care and a high incidence of suffering in children with cancer. We established a Palliative Care Unit (PCU) that is fully integrated with the Pediatric Hematology Oncology Department (PHOD). We wished to explore the impact of such integrative model on patterns of hospitalizations and exposure to palliative care of pediatric oncology patients. PROCEDURES: Retrospective search of medical records of patients admitted to the PHOD since PCU establishment in 1999, and of children who died from progressive disease between 1990 and 2005 was performed. Differences in clinical and prognostic variables between PCU and non-PCU patients, and differences in location of death before and after PCU establishment were evaluated. RESULTS: The majority (59%) of patients, who were hospitalized after the PCU establishment, were hospitalized in the PCU, including 49% of the good prognosis patients and 91% of the poor prognosis patients. Poor prognosis patients were hospitalized in the PCU earlier and with higher frequency compared to children with curable disease. After PCU opening there was a significant decline in the percentage of patients who died in the general pediatric ward, hematology-oncology ward, and at home from 40%, 26% and 28% to 4%, 8%, and 16%, respectively. CONCLUSIONS: Our integrative model results in exposure of the majority of children with cancer to palliative care. For poor prognosis patients, palliative care is introduced early enough to allow gradual transition from symptom control after diagnosis to end of life care. Pediatr Blood Cancer (c) 2008 Wiley-Liss, Inc.
2008
Hana G; Bella B; Dorit G; Shai I; Gideon R; Amos T
Pediatric Blood & Cancer
2008
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Journal Article
<a href="http://doi.org/10.1002/pbc.21476" target="_blank" rel="noreferrer">10.1002/pbc.21476</a>
Association between religious and socio-economic background of parents of children with solid tumors and DNR orders
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Survival Rate; Young Adult; Neoplasms; decision making; Adult; Parents; Education; Prognosis; Follow-Up Studies; Socioeconomic Factors; Resuscitation Orders; Religion; Medical Records; Preschool
BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who died between January 2000 and January 2011 was performed. The following data were sought: written evidence of DNR discussion with parents, religious background, educational level, monthly income. RESULTS: There was evidence of a discussion on DNR in 73/90 charts. DNR consent was obtained in 14/17 (82.4%) cases where at least one parent had >15 years of education versus in only 24/45 (53.3%) cases where both parents had ≤15 years education as determined by univariate analysis (P = 0.03). DNR consent was also more likely to be obtained among parents of children with income >10,000 NIS (24/30, 80.0% vs. 20/38, 52.6%, P = 0.013). Parents of Jewish (22/30, 73.3%), Islamic (16/26, 61.5%), and Christian (8/9, 88.9%) background were equally likely to provide DNR consent. However, Druze families were less likely to do so (2/8, 25.0%, P = 0.036). CONCLUSIONS: The process of decision-making to a DNR request was associated with parents' educational level and monthly family income, and not by religious background, with the exception of Druze families.
2014-02
Hileli I; Weyl Ben Arush M; Hakim F; Postovsky S
Pediatric Blood & Cancer
2014
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/pbc.24712" target="_blank" rel="noreferrer">10.1002/pbc.24712</a>
Adolescent end of life preferences and congruence with their parents' preferences: results of a survey of adolescents with cancer
BACKGROUND: Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers. PROCEDURE: Trained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers. RESULTS: Seventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruence between adolescents and their surrogates, but lower agreement on the importance of dying a natural death, dying at home and "wanting to know if I were dying." Among providers, 83% felt their patients' participation in the study was helpful to the patients and 78% felt it was helpful to them as providers. CONCLUSIONS: Adolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents' EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes.
2015-04
Jacobs S; Perez J; Cheng YI; Sill A; Wang J; Lyon ME
Pediatric Blood & 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/pbc.25358" target="_blank" rel="noreferrer">10.1002/pbc.25358</a>
Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents
Child; Female; Humans; infant; Male; Young Adult; Adult; Parent-Child Relations; quality of life; adolescent; Preschool; Adaptation; Psychological; bereavement; Terminally Ill/psychology; infant; Charting the Territory; Newborn; Parents/psychology; Anxiety/epidemiology/etiology/psychology; Depression/epidemiology; Neoplasms/psychology; Sweden/epidemiology
BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being. RESULTS: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life. CONCLUSIONS: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.
Jalmsell L; Kreicbergs U; Onelov E; Steineck G; Henter JI
Pediatric Blood & Cancer
2010
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Journal Article
<a href="http://doi.org/10.1002/pbc.22418" target="_blank" rel="noreferrer">10.1002/pbc.22418</a>
Factors influencing parental readiness to let their child with cancer die
Child; Female; Humans; Male; Grief; Adult; Parent-Child Relations; Middle Aged; Attitude to Death; Professional-Family Relations; adolescent; Preschool; infant; Parents/psychology; Parent caregivers; Neoplasms/psychology; Attitude to Death; Grief; Professional-Family Relations; Neoplasms/psychology; Parents/psychology
BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process. Most struggle to preserve their child. This study identified, from a parental perspective, the main factors that influence the transition from preserving life to letting go. PROCEDURE: A multi-centre, qualitative research, study was undertaken during the end-of-life (EoL) phase, comprising single or repeated interviews with 44 parents of 23 children with incurable cancer. RESULTS: We discovered that uncertainty, fragmentation and anxiety underpin the preserving life perspective. A perspective of letting go could be supported by a variety of factors. These included: Certainty that the child cannot be cured, postponed grief, the perception of suffering, the ability to disentangle needs and the ability to parent meaningfully. Hope, creating a peaceful parent-child relationship, and the attitude of professionals, could support movements in either direction. Of these, certainty, and in most cases postponed grief, were pre-conditions for the transition towards letting go. Strategies such as not challenging the parents' suppression of grief, creating certainty about the child's condition and supporting parents in efforts to redefine their parental role, supported progress towards accepting a letting go perspective. CONCLUSIONS: Parents' internal struggle between a preserving frame of mind and one of letting go is influenced by a combination of factors. However, professionals can influence some of these factors in order to facilitate this transition.
Kars MC; Grypdonck MH; Beishuizen A; Meijer-van den Bergh EM; van Delden JJ
Pediatric Blood & Cancer
2010
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Journal Article
<a href="http://doi.org/10.1002/pbc.22532" target="_blank" rel="noreferrer">10.1002/pbc.22532</a>
Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team
BACKGROUND: There is a general consensus that involving a specialized palliative care team in the care of children with advanced cancer can help optimize end-of-life communication; however, how this compares to standard oncology care is still unknown. We aimed to determine whether there was an association between specialist palliative care involvement and improved end-of-life communication for children with advanced cancer and their families. PROCEDURE: We administered questionnaires to 75 bereaved parents (response rate 54%). Outcome measures were presence or absence of 11 elements related to end-of-life communication. RESULTS: Parents were significantly more likely to receive five communication elements if their child was referred to a palliative care team. These elements are: discussion of death and dying with parents by the healthcare team (P < 0.01); discussion of death and dying with child by the healthcare team when appropriate (P < 0.01); providing parents with guidance on how to talk to their child about death and dying when appropriate (P < 0.01); preparing parents for medical aspects surrounding death (P = 0.02) and sibling support (P = 0.02). Children were less likely to be referred to a palliative care team if they had a hematologic malignancy. CONCLUSIONS: Children who receive standard oncology care are at higher risk of not receiving critical communication elements at end of life. Strategies to optimize end-of-life communication for children who are not referred to a palliative care team are needed. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.
2015-04
Kassam A; Skiadaresis J; Alexander S; Wolfe J
Pediatric Blood & 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/pbc.25530" target="_blank" rel="noreferrer">10.1002/pbc.25530</a>
Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?
adolescent; Child; Female; Humans; Male; Neoplasms; Terminal Care; home care services; hospice care; Parents; Prognosis; Questionnaires; Follow-Up Studies; Attitude to Death; Physicians; Choice Behavior; Residence Characteristics; Hospitals; quality of life; Preschool
BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We aimed to determine bereaved parent and clinician preferences for location to EOL care and death. PROCEDURE: We administered questionnaires to 75 bereaved parents (response rate 54%) and 48 pediatric oncology clinicians (response rate 91%) at a large teaching hospital. Main outcome measure was parent and clinician ranking for preferred location of EOL care and death if given the options of home, hospital or FSPH. RESULTS: Majority of parents and clinicians ranked home as their first choice for EOL care (70.2% and 87%, respectively) and death (70.8% and 89.1%, respectively). Compared to clinicians, parents gave a higher ranking to hospital (P < 0.01) and lower ranking to FSPH (P < 0.01) as the preferred location for EOL care and death. Congruence between actual and preferred location of EOL care was more likely when a palliative care team was involved (P < 0.01) and less likely for children with haematologic malignancies (P = 0.03). CONCLUSIONS: Parents and clinicians prefer home as the location for EOL care and death for children with cancer. Hospital based palliative care is a preferred alternative if home is not desired. FSPH is a relatively recent phenomena and further research needs to be directed towards understanding its cost benefit in comparison to home and hospital-based EOL care. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013-11
Kassam A; Skiadaresis J; Alexander S; Wolfe J
Pediatric Blood & Cancer
2013
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/pbc.24872" target="_blank" rel="noreferrer">10.1002/pbc.24872</a>
Parent perceptions of the quality of information received about a child's cancer
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Neoplasms; Adult; Parents; Questionnaires; Professional-Family Relations; Preschool; Health Communication
BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer (response rate 70%), treated at the Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Mass, and the children's physicians. Parents were asked to report the quality of information received about the child's cancer in several domains. RESULTS: Most parents reported that information about their child's cancer had been excellent (49%) or good (41%) overall, and ratings were similar for information about diagnosis (P = 0.62) and treatment (P = 0.59). Fewer parents felt they received high quality information about how cancer treatment is working (P < 0.001), likelihood of cure (P < 0.001), what the diagnosis means for the future (P < 0.001), and whether there is a cause for the child's cancer (P < 0.001). In multivariable models, parents were more likely to consider information of high quality when they also rated physician communication style highly. The accuracy of their knowledge on likelihood of cure and the child's future limitations, however, was not associated with quality ratings. CONCLUSIONS: Although parents feel that they have received high quality cancer information overall, parents feel they receive lower quality information about issues relating to the child's future. Yet quality ratings are not associated with their actual knowledge. Parent perceptions of quality represent one, but not the only, facet of communication quality.
2013-11
Kaye E; Mack JW
Pediatric Blood & Cancer
2013
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/pbc.24652" target="_blank" rel="noreferrer">10.1002/pbc.24652</a>
Broaching Goals-Of-Care Conversations in Advancing Pediatric Cancer
Oncology
Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversations between pediatric oncologists, patients, and parents, capturing 141 conversations (∼2400 minutes) for 17 patients with advancing illness across the study period. We conducted content analysis to identify strategies for broaching goals-of-care conversations and found five distinct communication approaches, which were not mutually exclusive. Further research is needed to explore patient and family views on best practices for broaching discussions about goals of care.
Kaye EC; Woods C; Velrajan S; Lemmon ME; Baker JN; Mack JW
Pediatric Blood and Cancer
2021
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<a href="http://doi.org/10.1002/pbc.29270" target="_blank" rel="noreferrer noopener">10.1002/pbc.29270</a>
A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment
Child; Female; Humans; Male; Questionnaires; adolescent; Preschool; Antineoplastic Combined Chemotherapy Protocols/classification/therapeutic use; Disease Specific; Neoplasms/drug therapy
Kazak AE; Hocking MC; Ittenbach RF; Meadows AT; Hobbie W; DeRosa BW; Leahey A; Kersun L; Reilly A
Pediatric Blood & Cancer
2012
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Journal Article
<a href="http://doi.org/10.1002/pbc.23320" target="_blank" rel="noreferrer">10.1002/pbc.23320</a>
A palliative prognostic score for terminally ill children and adolescents with cancer
Validation Studies as Topic; Validation Studies
The loss of a child is considered the hardest moment in a parent's life. Studies addressing length of survival under pediatric palliative care are rare. The aim of this study was to improve a survival prediction model for children in palliative care, as accurate information positively impacts parent and child preparation for palliative care.Sixty-five children referred to a pediatric palliative care team were followed from August 2003 until December 2006. Variables investigated (also included in previous studies) were: diagnosis, home care provider, presence of anemia, and performance status score given by the home care provider. Clinical variables such as symptom number were also used to test the score's ability to predict survival.The length of survival prognostic score was validated using the above variables. The number of symptoms at transition to palliative care does not improve the score's predictive ability. The sum of the single scores gives an overall score for each patient, dividing the population into three groups by probability of 60-day survival: Group A 80.0%, Group B 38.0%, and Group C 28.5% (P < 0.001).A pediatric palliative care score based on easily accessible variables is statistically significant in multivariate analysis. Factors that increase accuracy of life expectancy prediction enable adequate information to be given to patients and families, contributing to therapeutic decision-making issues. Pediatr Blood Cancer © 2010 Wiley-Liss, Inc.
2010
Kurashima AY; de Oliveira Latorre Maria do Rosario Dias; Camargo Beatriz de
Pediatric Blood & Cancer
2010
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Journal Article
<a href="http://doi.org/10.1002/pbc.22644" target="_blank" rel="noreferrer">10.1002/pbc.22644</a>
Standards of nutritional care in pediatric oncology: results from a nationwide survey on the standards of practice in pediatric oncology. A Children's Oncology Group study
Child; Humans; quality of life; Nutritional Failure; Clinical Trials; Guideline Adherence/standards; Guidelines/standards; Malnutrition/diet therapy/etiology; Neoplasms/complications/mortality; Nutrition Surveys; Nutritional Support/methods/standards; Oncologic Nursing/standards
BACKGROUND: The prevalence of malnutrition in children with cancer ranges between 8% and 60%. Malnutrition is strongly associated with the nature of treatment and increases an individual's risk of infection. Clinical studies have suggested that nutrition intervention may decrease toxicity and improve survival in the oncology population. In order to identify the standards of practice in the nutritional management of a child with cancer, we conducted an international survey in institutions that are part of the Children's Oncology Group (COG) consortium. PROCEDURE: Surveys were submitted to 233 participating COG institutions. We requested one member in three disciplines complete the survey: physician, registered dietitian, and nurse or nurse practitioner. The survey was returned to the nutrition sub-committee of COG. RESULTS: Fifty-four percent of institutions responded to the survey. We found no consistency in the provision of nutrition services. Assessment of nutritional status does not routinely occur and different indices are employed to indicate the nutrition status of a patient. Institutions rely upon different guidelines when categorizing malnutrition. When nutrition intervention is clinically indicated, a variety of approaches are employed. CONCLUSIONS: This survey did not find standardized nutrition protocols being employed in the pediatric oncology population. The effect of varied nutrition practices on the quality of life, toxicity, and outcome in children with cancer is unknown. Prior to the initiation of clinical trials, uniform guidelines need to be developed and validated. Future clinical trials need to investigate the most efficacious method of nutrition assessment and intervention and its effect on quality of life, toxicity, and survival in children with cancer.
2006
Ladas EJ; Sacks N; Brophy P; Rogers PC
Pediatric Blood & Cancer
2006
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Journal Article
<a href="http://doi.org/10.1002/pbc.20435" target="_blank" rel="noreferrer">10.1002/pbc.20435</a>
Shared Spiritual Beliefs between Adolescents with Cancer and Their Families
quality of life; Adolescent; Adult; Female; Follow-Up Studies; Humans; Male; Prognosis; Decision Making; Longitudinal Studies; Single-Blind Method; Young Adult; Cross-Sectional Studies; Family/psychology; Religion and Medicine; Spirituality; Advance Care Planning/statistics & numerical data; Adolescent Behavior; family; adolescents; cancer; congruence; spirituality; funding from the American Cancer Society to adapt/translate this protocol into; Neoplasms/psychology/therapy; Spanish. There are no other conflicts of interest to disclose.; study from the National Institutes of Health. Maureen E. Lyon is also receiving
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. RESULTS: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.
Livingston J; Cheng YI; Wang J; Tweddle M; Friebert S; Baker JN; Thompkins J; Lyon ME
Pediatric Blood and Cancer
2020
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<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener">10.1002/pbc.28696</a>
Child-rearing in the context of childhood cancer: Perspectives of parents and professionals
psychosocial; Pediatric; cancer; parenting; childhood; Child Rearing
Background Elevated distress has been well documented among parents of children with cancer. Family systems theories suggest that cancer-related stressors and parental distress have the potential to affect child-rearing practices, but this topic has received limited empirical attention. The present work examined self-reported child-rearing practices among mothers and fathers of children with cancer and matched comparisons. Procedure Medical and psychosocial professionals with expertise in pediatric oncology selected items from the Child-Rearing Practices Report (CRPR) likely to differentiate parents of children with cancer from matched comparison parents. Then, responses on these targeted items were compared between parents of children with cancer (94 mothers, 67 fathers) and matched comparisons (98 mothers, 75 fathers). Effect sizes of between-group differences were compared for mothers versus fathers. Results Pediatric oncology healthcare providers predicted that 14 items would differentiate child-rearing practices of parents of children with cancer from parents of typically developing children. Differences emerged on six of the 14 CRPR items. Parents of children with cancer reported higher levels of spoiling and concern about their child's health and development than comparison parents. Items assessing overprotection and emotional responsiveness did not distinguish the two groups of parents. The effect size for the group difference between mothers in the cancer versus comparison groups was significantly greater than that for fathers on one item related to worry about the child's health. Conclusion Parents of children with cancer report differences in some, but not all, domains of child-rearing, as predicted by healthcare professionals. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Long KA; Keeley L; Reiter-Purtill J; Vannatta K; Gerhardt CA; Noll RB
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24556" target="_blank" rel="noreferrer">10.1002/pbc.24556</a>
Outcome of children treated for relapsed acute myeloid leukemia in Central America
adolescent; Child; Female; Humans; Male; retrospective studies; Survival Rate; Time Factors; Leukemia; Preschool; Acute; Central America; Disease-Free Survival; Promyelocytic; Recurrence
BACKGROUND: Relapsed childhood acute myeloid leukemia (AML) outcomes have not been documented in resource-limited settings. We examined survival after relapse for children with AML (non-APML) and acute promyelocytic leukemia (APML) in Central America. PROCEDURE: We retrospectively evaluated outcomes of children with first relapse of AML (non-APML) and APML in Guatemala, Honduras, or El Salvador diagnosed between 1997 and 2011. Predictors of subsequent event-free survival (EFS) and overall survival (OS) were examined. RESULTS: We identified 140 children with relapsed AML (non-APML), and 24 with relapsed APML. Two-year subsequent EFS and OS (±SE) were 7.0 ± 2.5% and 9.1 ± 2.8%, respectively. Worse outcomes were associated with Hispanic or Indigenous heritage, white blood cell count at diagnosis ≥50 × 10(9) /L, and time to relapse <18 months. For those with relapsed APML, subsequent 2-year EFS and OS were 36.7 ± 10.8% and 43.4 ± 12.1%, although few patients survived beyond 3 years. 15.2% of all patients were managed solely with palliative intent following first relapse. CONCLUSIONS: Children with relapsed AML in Central America rarely survive, so palliative strategies should be considered following relapse in this population. However, children with late relapse or with APML may have a prolonged period of remission with second treatment, and consideration of re-treatment may be appropriate.
2014-07
Marjerrison S; Antillon F; Bonilla M; Fu L; Martinez R; Valverde P; Vasquez R; Howard SC; Ribeiro RC; Sung L
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.24942" target="_blank" rel="noreferrer">10.1002/pbc.24942</a>
Use of alternative and complementary therapies in children with cancer.
PedPal Lit
2005
Martel D; Bussieres JF; Theoret Y; Lebel D; Kish S; Moghrabi A; Laurier C
Pediatric Blood & Cancer
2005
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Journal Article
<a href="http://doi.org/10.1002/pbc.20205" target="_blank" rel="noreferrer">10.1002/pbc.20205</a>
Brachytherapy in children with rhabdomyosarcomas of the nasolabial fold
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Survival Rate; Rhabdomyosarcoma; Skin Neoplasms; Preschool; Newborn; Disease-Free Survival; Brachytherapy; Facial Neoplasms; Nasolabial Fold
BACKGROUND: Rhabdomyosarcomas (RMS) of the nasolabial fold can be difficult to manage surgically due to functional and cosmetic limitations. Therefore, brachytherapy (BT) has been proposed to improve local control while limiting the volume of irradiation as well as the extent of the surgical excision. MATERIALS AND METHODS: Sixteen pediatric cases with RMS of the nasolabial fold treated from 1971 to 2005 were retrospectively reviewed. RESULTS: Median follow-up was 4.4 years (1.7-33). Half of the patients were male and their age at diagnosis ranged from 4 months to 13.5 years. Histological subtypes included 10 embryonal and 6 alveolar RMS. Initial treatment consisted of induction multi-agent chemotherapy in all cases. In 12 patients, BT was combined with local excision (4 complete resections, 1 with macroscopic residual disease, and 7 with microscopic disease). Low dose-rate brachytherapy was performed in all cases according to the Paris system, using plastic catheters implanted per-operatively. The doses delivered ranged from 50 to 70 Gy, depending on chemotherapy response, and surgical margin status. 10 patients relapsed: 4 local, 6 regional, and 2 metastatic failures were reported. The median time to relapse was 6.5 months. At the time of analysis eight patients were alive and four had died. Four cases, under palliative care at last check-up, were lost to follow-up. CONCLUSION: BT provided an acceptable local control rate, but the poor regional control of these cases may suggest a need for more aggressive management of cervical regional lymph node regions in RMS of the nasolabial fold.
2014-07
Mazeron R; Oberlin O; Dumas I; Kolb F; Goulart J; Rivin E; Haie-Méder C
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.24977" target="_blank" rel="noreferrer">10.1002/pbc.24977</a>
Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
decision-making; end-of-life; experiences; hematopoietic stem cell transplantation; parental; pediatric
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.Methods: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.Results: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.Discussion: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
Mekelenkamp H; Lankester A C; Bierings M B; Smiers F J W; Vries M C; Kars M C; de Vries M C
Pediatric Blood & Cancer
2020
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<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">10.1002/pbc.28229</a>
Covid-19 in Pediatric Cancer Patients in a Resource-Limited Setting: National Data from Peru
Low resource setting; oncology
To the Editor:
Peru, an upper-middle income country according to the World Bank, is being severely affected by the COVID-19 pandemic, counting today 285 213 cases and 9677 deaths, and having one of the highest incidence rates of COVID-19 in the world (87.5 per million inhabitants)[...]
Montoya J; Ugaz C; Alarcon S; Maradiegue E; Garcia J; Diaz R; Zapata A; Chavez S; Morales R; Ordonez K; Hernandez E; Reano R; Gutierrez C; Vargas MP; Sanchez K; Valdiviezo C; Maza I; Rojas N; Moore C; Leon E; Vasquez L
Pediatric Blood and Cancer
2021
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.28610" target="_blank" rel="noreferrer noopener">10.1002/pbc.28610</a>
Physical activity (PA) and sleep among children and adolescents with cancer
adolescent; Child; Female; Humans; Male; Neoplasms; Fatigue; Motor Activity; Sleep; Actigraphy
BACKGROUND: Although sleep and physical activity often are impaired among adult cancer patients, there is limited data among pediatric oncology populations. We conducted a prospective study to investigate the relationship between physical activity (PA) and sleep among children with cancer. PROCEDURE: Between 11/12/09 and 02/06/12, PA while awake and sleep variables were assessed by actigraphy collected over 7 days in 36 children (age range 8-18 years) with cancer (23 leukemia/lymphoma, 5 brain tumor, 8 solid tumor). Sleep diaries were used to determine sleep time, sleep quality, and morning mood. Fatigue was assessed at study initiation using fatigue instruments. RESULTS: Participants had impaired sleep based upon normative data compiled from multiple studies of more than 1,700 healthy children from 1 to 18 years of age [1], including decreased total sleep time (mean 6.6 hours, standard deviation (SD) 1.3 hours), increased wake after sleep onset (WASO; mean 2 hours, SD 1.4 hours), increased awakenings during sleep (mean 28.3 wake bouts, SD 7.8 bouts), and decreased sleep efficiency (mean 74.2%, SD 13.3%). Fatigue correlated with self-reported sleep quality but not with disturbances in sleep as measured by actigraphy. In longitudinal models that controlled for age, diagnosis group, gender, race, and steroid use, higher average activity, as measured by actigraphy, was associated with improved sleep quantity (P = 0.005) and efficiency (P = 0.001). CONCLUSION: Pediatric oncology patients demonstrate impaired sleep. Greater PA was significantly associated with improved sleep quantity and efficiency in pediatric oncology participants. As a potentially modifiable factor, PA may offer a mechanism to improve sleep in pediatric oncology patients.
2013-11
Orsey AD; Wakefield DB; Cloutier MM
Pediatric Blood & Cancer
2013
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/pbc.24641" target="_blank" rel="noreferrer">10.1002/pbc.24641</a>
Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy
Child; Female; Humans; infant; Male; Survival Rate; Young Adult; Adult; Questionnaires; Treatment Outcome; Religion; Complementary Therapies; Treatment Failure; adolescent; Preschool; infant; Newborn; Neoplasms/therapy; Antineoplastic Agents/therapeutic use; Salvage Therapy
BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed. Secondary objectives included describing patient/family objectives for using CAM, satisfaction with CAM, financial and time expenditures on CAM, and patient desire for physician involvement in CAM use. PROCEDURE: Fifty-four patients 0-25 years of age, for whom frontline therapy had failed, were enrolled. The subjects completed an anonymous one-time self-administered questionnaire. RESULTS: Eighty-two percent of respondents reported using CAM, 52% of which reported initiating or increasing CAM use after failure of frontline therapy. The most commonly used CAM categories were prayer/spiritual healing (83%) and oral/dietary supplements (31%). Prayer/spiritual healing was most commonly used to cure or slow the progression of cancer (59%). Oral/dietary supplements were used to improve overall health and well-being (65%). Estimates of money and time spent ranged from $0 to >$1,275 (median $225) and 1 to > 700 hr (median 10 hr). Sixty percent of CAM users reported their oncologist was unaware of their use. Most participants who used non-spiritual/prayer CAM continued use while hospitalized or while receiving chemotherapy. CONCLUSIONS: Understanding usage patterns may better help pediatric oncologists and palliative-care specialists address the needs of this population, and protect against potentially dangerous drug interactions or side effects from combined CAM and chemotherapy use.
Paisley MA; Kang T; Insogna IG; Rheingold SR
Pediatric Blood & Cancer
2011
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/pbc.22939" target="_blank" rel="noreferrer">10.1002/pbc.22939</a>
Patterns of Medication Use at End of Life by Pediatric Inpatients with Cancer
end of life; medication use; pediatric cancer care
OBJECTIVE: To describe medication utilization patterns by pediatric inpatients with cancer during their last week of life. METHODS: This retrospective study used data from the Vizient Clinical Database/Resource Manager, a national compilation of clinical and resource use data from over 100 academic medical centers and affiliates. Patients (0-21 years) with malignancy who died during hospitalization (2010-2017) were included (N = 1659). Medications were categorized as opioid, benzodiazepine, gastrointestinal related, chemotherapy, anti-infectives, or vasopressors. Exposure to each group was ascertained for all patients at 1 week and 1 day prior to death. Factors associated with exposure were examined using generalized estimating equations, and summarized using adjusted odds ratios (aORs). RESULTS: Over the last week of life, there was increased use of opioids (76% to 82%, aOR = 1.55, P < .001) and benzodiazepines (53% to 66%, aOR = 1.36, P = .02), while gastrointestinal-related medication use decreased (92% to 89%, aOR = 0.69, P = .001). Patients had decreased exposure to chemotherapy (10% to 5%, aOR = 0.46, P < .001) and anti-infectives (82% to 73%, aOR = 0.41, P = .002). Vasopressor use increased as death approached (15% to 28%, aOR = 1.67, P = .04). Factors significantly associated with exposure varied with medication category, and included age, race, length of stay, malignancy type, death in the intensive care unit, history of hematopoietic stem cell transplant, and do-not-resuscitate status. CONCLUSION: During the week preceding death, administration of symptom management medications increased for children with cancer, but use was not universal. Potentially life-sustaining medications were often continued. Variability in utilization suggests differences in provider/family decision making that warrant further study to develop an evidence-based approach to end-of-life care.
Prozora S; Shabanova V; Ananth P; Pashankar F; Kupfer GM; Massaro SA; Davidoff AJ
Pediatric Blood and Cancer
2020
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.28837" target="_blank" rel="noreferrer noopener">10.1002/pbc.28837</a>