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40
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Text
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Citation List Month
May 2016 List
Dublin Core
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Title
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Shared Decision Making For Infants Born At The Threshold Of Viability: A Prognosis-based Guideline
Publisher
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Journal Of Perinatology : Official Journal Of The California Perinatal Association
Date
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2016
Creator
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Lemyre B; Daboval T; Dunn S; Kekewich M; Jones G; Wang D; Mason-Ward M; Moore GP
Description
An account of the resource
OBJECTIVE:
Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline.
STUDY DESIGN:
We followed a five step approach and used the AGREE II framework: (1) systematic review and critical appraisal of published guidelines; (2) identification of key medical factors for decision making; (3) systematic reviews; (4) creation of a multi-disciplinary working group and (5) external consultation and appraisal.
RESULT:
No published guideline met high-quality appraisal criteria. Survival, neurodevelopmental disability, quality of life of child and parents, and maternal mortality and risk of long-term morbidity were identified as key for quality decision-making. Eighteen stakeholders (including parents) advocated for the incorporation of parents' values and preferences in the process.
CONCLUSION:
A novel framework, based on prognosis, was generated to guide when early intensive and palliative care may both be offered to expectant parents. Pre-implementation assessment is underway to identify barriers and facilitators to putting in practice.
Rights
Information about rights held in and over the resource
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
Daboval T
Dunn S
Jones G
Journal of perinatology : official journal of the California Perinatal Association
Kekewich M
Lemyre B
Mason-Ward M
May 2016 List
Moore GP
Wang D
-
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
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1399-3046.2004.00136.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1399-3046.2004.00136.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Non-compliance in children post-liver transplant. Who are the culprits?
Publisher
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Pediatric Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
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Child; Female; Humans; Male; Survival Rate; Parents; Treatment Refusal; Socioeconomic Factors; Ambulatory Care; adolescent; Adolescent Transitions; Graft Rejection; Reoperation; Immunosuppressive Agents/therapeutic use; Liver Transplantation/mortality
Creator
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Falkenstein K; Flynn L; Kirkpatrick B; Casa-Melley A; Dunn S
Description
An account of the resource
Although non-compliance in pediatric liver transplants is known to be a major cause of late graft loss and patient mortality, follow-up seems inconsistent. As liver transplant becomes a luxury because of the shortage of organs, the need to maximize graft and patient survival by intense monitoring becomes a necessity. When evaluating children with elevated liver enzymes post-transplant, early or late non-compliance should always be suspected. The risk of non-compliance in children with chronic illness varies from 10 to 89%. In a study by Sudan et al. non-compliance was one of the leading causes of late mortality in children age 10-17 yr. Although it is well documented that teenagers have a high rate of non-compliance, the rate in the younger children has not been documented. In our series, we found that parental non-compliance comprises the majority of our problems with liver dysfunction, hospitalization, and graft loss. The purpose of this study was to evaluate the incidence of non-compliance in children post-liver transplant. A retrospective chart review of patient records from admissions and outpatient records was performed for documentation of elevated enzymes and low immunosuppressive levels. From July 1987 to December 2002, our program performed 266 liver transplants in 234 children, with 1-yr graft survival of 84% and 1-yr patient survival of 90%. Our overall patient survival was 85% with 77% graft survival. There were 40 children with documented non-compliance with mild to severe liver dysfunction in this study. Twenty-eight of these children were younger than 10 yr [28 of 40 (46%) <5 yr], and 12 (30%) were older than 10 yr at the time of rejection. In 10 of 40 children, there was one documented incident of non-compliance, while 26 of 40 had two to four incidents, and four had five or more documented events. Our children (50%) came from two-parent households. The remaining 50% were from single households. In 27 of 40 (68%) children, rejection was confirmed by liver biopsy. In children on cyclosporine (Neoral; Novartis, East Hanover, NJ, USA) with a known history of non-compliance and low immunosuppressive levels, C2 monitoring was performed to verify absorption. Admission for drug monitoring and verification of non-compliance was accomplished in 32 of 40 (80%). Four of the 40 children (10%) were retransplanted, and one child had died. In conclusion, non-adherence to medications remains a major source of graft loss and morbidity post-transplant. We found that non-compliance crosses all socio-economic and cultural groups and that flexibility of clinic hours, shortened time between visits, and decreased numbers and times of medication will increase adherence.
2004
Identifier
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<a href="http://doi.org/10.1111/j.1399-3046.2004.00136.x" target="_blank" rel="noreferrer">10.1111/j.1399-3046.2004.00136.x</a>
Rights
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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
The nature or genre of the resource
Journal Article
2004
Adolescent
Adolescent Transitions
Ambulatory Care
Backlog
Casa-Melley A
Child
Dunn S
Falkenstein K
Female
Flynn L
Graft Rejection
Humans
Immunosuppressive Agents/therapeutic use
Journal Article
Kirkpatrick B
Liver Transplantation/mortality
Male
Parents
Pediatric Transplantation
Reoperation
Socioeconomic Factors
Survival Rate
Treatment Refusal