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Text
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<a href="http://doi.org/10.1016/j.bbmt.2014.10.016" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.bbmt.2014.10.016</a>
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Title
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Prevalence and Impact of Financial Hardship Among New England Pediatric Stem Cell Transplant Families
Publisher
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Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation
Date
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2014
Creator
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Bona K; London WB; Guo D; Abel G; Lehmann L; Wolfe J
Description
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PURPOSE: Poverty is correlated with negative health outcomes in pediatric primary care and subspecialties; its association with childhood HSCT patterns of care and clinical outcomes is not known. We describe family-reported financial hardship at a primary referral center in New England, and explore the relationship between measures of poverty and child patterns of care and clinical outcomes. PATIENTS AND METHODS: Forty-five English-speaking parents of children status-post allogeneic HSCT in the prior twelve months completed a one-time survey (response rate 88%). RESULTS: Low-income families defined as ≤200% federal poverty level (FPL) were compared to all others. Eighteen (40%) families reported pre-HSCT incomes ≤200% FPL. Material hardship including food, housing, or energy insecurity was reported by 17 (38%) families in the cohort. Low-income families reported disproportionate transplant-related income losses with 7 (39%) reporting annual income losses of >40% compared to 2 (18%) wealthier families (p=0.02). In univariate analyses, 11 (61%) low-income children experienced Graft Versus Host Disease (GVHD) of any grade in the first 180 days post-HSCT compared to 2 (7%) wealthier children (p=0.004). CONCLUSION: We conclude that low income and in particular, material hardship, are prevalent in a New England pediatric HSCT population and represent targets for improvement in quality of life. The role of poverty in mediating GVHD deserves further investigation in larger studies which can control for known risk factors, and may provide a targetable source of transplant-associated morbidity.
2014-10
Identifier
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<a href="http://doi.org/10.1016/j.bbmt.2014.10.016" target="_blank" rel="noreferrer">10.1016/j.bbmt.2014.10.016</a>
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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).
Type
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Journal Article
2014
Abel G
Backlog
Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation
Bona K
Guo D
Journal Article
Lehmann L
London WB
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Backlog
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<a href="http://doi.org/10.1089/jpm.2007.0224" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2007.0224</a>
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Title
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Health Literacy not Race Predicts End-of-Life Care Preferences
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Journal Of Palliative Medicine
Date
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2008
Creator
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Volandes AE; Paasche-Orlow M; Gillick MR; Cook EF; Shaykevich S; Abbo ED; Lehmann L
Description
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ABSTRACT Background: Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life. Objective: Since the medical information presented to subjects is frequently complex, we hypothesized that apparent differences in end-of-life preferences and decision making may be due to disparities in health literacy. A video of a patient with advanced dementia may overcome communication barriers associated with low health literacy. Design: Before and after oral survey. Participants: Subjects presenting to their primary care doctors. Methods: Subjects were asked their preferences for end-of-life care after they heard a verbal description of advanced dementia. Subjects then viewed a 2-minute video of a patient with advanced dementia and were asked again about their preferences. For the analysis, preferences were dichotomized into comfort care and aggressive care. Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine (REALM) and subjects were divided into three literacy categories: low (0-45, sixth grade and below), marginal (46-60, seventh to eighth grade) and adequate (61-66, ninth grade and above). Unadjusted and adjusted logistic regression models were fit using stepwise algorithms to examine factors related to initial preferences before the video. Results: A total of 80 African Americans and 64 whites completed the interview. In unadjusted analyses, African Americans were more likely than whites to have preferences for aggressive care after the verbal description, odds ratio (OR) 4.8 (95% confidence interval [CI] 2.1-10.9). Subjects with low or marginal health literacy were also more likely than subjects with adequate health literacy to have preferences for aggressive care after the verbal description, OR 17.3 (95% CI 6.0-49.9) and OR 11.3 (95% CI 4.2-30.8) respectively. In adjusted analyses, health literacy (low health literacy: OR 7.1, 95% CI 2.1-24.2; marginal health literacy OR 5.1, 95% CI 1.6-16.3) but not race (OR 1.1, 95% CI 0.3-3.2) was an independent predictor of preferences after the verbal description. After watching a video of advanced dementia, there were no significant differences in the distribution of preferences by race or health literacy. Conclusions: Health literacy and not race was an independent predictor of end-of-life preferences after hearing a verbal description of advanced dementia. In addition, after viewing a video of a patient with advanced dementia there were no longer any differences in the distribution of preferences according to race and health literacy. These findings suggest that clinical practice and research relating to end-of-life preferences may need to focus on a patient education model incorporating the use of decision aids such as video to ensure informed decision-making.
2008
Identifier
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<a href="http://doi.org/10.1089/jpm.2007.0224" target="_blank" rel="noreferrer">10.1089/jpm.2007.0224</a>
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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).
Type
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Journal Article
2008
Abbo ED
Backlog
Cook EF
Gillick MR
Journal Article
Journal of Palliative Medicine
Lehmann L
Paasche-Orlow M
Shaykevich S
Volandes AE
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
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Title
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End-of-life Care Patterns Associated With Pediatric Palliative Care Among Children Who Underwent Hematopoietic Stem Cell Transplant.
Publisher
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Biology Of Blood And Marrow Transplantation
Date
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2016
Subject
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Pediatrics; Parents; Stem Cell Transplant; End Of Life Care; Multicenter; Oncology Care; Perspectives; Immunology; Outcomes; Transplantation; Advanced Cancer; Chemotherapy; Palliative Care; Bone-marrow-transplantation Hematology; Integration; Psychological Distress; Index Medicus
End Of Life; Palliative Care; Pediatrics; Stem Cell Transplant
Creator
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Ullrich C; Lehmann L; London WB; Guo D; Sridharan M; Koch R; Wolfe J
Description
An account of the resource
Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown. Therefore, we evaluated whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive. Medical records of children who underwent SCT at Boston Children's Hospital/Dana-Farber Cancer Institute for any indication from September 2004 to December 2012 and did not survive were reviewed. Child demographic and clinical characteristics and PPC consultation and EOL care patterns were abstracted. Children who received PPC (PPC group) were compared with those who did not (non-PPC group). Children who received PPC consultation (n = 37) did not differ from the non-PPC group (n = 110) with respect to demographic or clinical characteristics, except they were more likely to have undergone unrelated allogeneic SCT (PPC, 68%; non-PPC, 39%; P = .02) or to have died from treatment-related toxicity (PPC, 76%; non-PPC, 54%; P = .03). PPC consultation occurred at a median of .7 months (interquartile range [IQR], .4 to 4.2) before death. PPC consultations most commonly addressed goals of care/decision-making (92%), psychosocial support (84%), pain management (65%), and non-pain symptom management (70%). Prognosis discussions (ie, the likelihood of survival) occurred more commonly in the PPC group (PPC, 97%; non-PPC, 83%; P = .04), as did resuscitation status discussions (PPC, 88%; non-PPC, 58%; P = .002). These discussions also occurred earlier in the PPC group, for prognosis a median of 8 days (IQR, 4 to 26) before death compared with 2 days (IQR, 1 to 13) in the non-PPC group and for resuscitation status a median of 7 days (IQR, 3 to 18) compared with 2 days (IQR, 1 to 5) in the non-PPC group (P < .001 for both of the timing of prognosis and resuscitation status discussions). The PPC group was also was more likely to have resuscitation status documented (PPC, 97%; non-PPC, 68%; P = .002). With respect to patterns of care, compared with non-PPC, the PPC group was as likely to die in a medicalized setting (ie, the hospital) (PPC, 84%; non-PPC, 77%; P = .06) or have hospice care (PPC, 22%; non-PPC, 18%; P = .6). However, among children who died in the hospital, those who received PPC were more likely to die outside the intensive care unit (PPC, 80%; non-PPC, 58%; P = .03). In addition, the PPC group was less likely to receive intervention-focused care such as intubation in the 24 hours before death (PPC, 42%; non-PPC, 66%; P = .02) or cardiopulmonary resuscitation (PPC, 3%; non-PPC, 20%; P = .03) at EOL. Children who received PPC for at least a month were more likely to receive hospice care (PPC, 41%; non-PPC, 5%; P = .01). Children who underwent SCT and did not survive were likely to die in a medicalized setting, irrespective of PPC. However, PPC was associated with less intervention-focused care and greater opportunity for EOL communication and advance preparation. In the intense, cure-oriented SCT setting, PPC may facilitate advance care planning in this high-risk population.
Identifier
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DOI: 10.1016/j.bbmt.2016.02.012
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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).
2016
Advanced Cancer
Biology of Blood and Marrow Transplantation
Bone-marrow-transplantation Hematology
Chemotherapy
End Of Life
End Of Life Care
Guo D
Immunology
Index Medicus
Integration
June 2016 List
Koch R
Lehmann L
London WB
Multicenter
Oncology Care
Outcomes
Palliative Care
Parents
Pediatrics
Perspectives
Psychological Distress
Sridharan M
Stem Cell Transplant
Transplantation
Ullrich C
Wolfe J