1 40 3 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 February 2025 List 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 February List 2025 URL Address <a href="http://doi.org/10.1017/S1047951124024478" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1047951124024478</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 Demographic and clinical profile of children with congenital heart diseases receiving palliative care Publisher An entity responsible for making the resource available Cardiology in the Young Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; adult; controlled study; human; male; quality of life; palliative therapy; medical decision making; terminal care; prognosis; anxiety; advance care planning; consultation; clinical article; intervention study; patient referral; surgery; adolescent; cognition; conference abstract; congenital heart disease; Pediatric Quality of Life Inventory; reoperation; oxygen concentrator Creator An entity primarily responsible for making the resource Prabhu SS; Dixit P; Dinand V; Khanna S; Sumitra V; Jain S; Mishra J; Panda B; Bodhanwala M Description An account of the resource Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. <br/>Method(s): This prospective interventional study was conducted on 100 patients below 18 years of age having CHD with no corrective surgical management available or who become inoperable or who required multiple surgical revisions with poor outcomes. The demographic profile and challenges faced by the parents were recorded. They were enrolled in a PPC unit and were provided counseling sessions for 1 month along with other palliative care provisions. For children between 2 and 18 years of age (N =20), an age-specific PedsQL cardiac module was used to assess their quality of life before and after 1 month of enrolment. <br/>Result(s): The challenges encountered by the parents (n=100) were categorized as - financial difficulty (93%), anxiety regarding outcome (94%), lack of communication (41%), and non-availability of specialty care (25%). On the age-specific PedsQL cardiac module, the 4 domains of physical, emotional, cognitive, and psychosocial were analyzed. The domain most affected in 2 to 4 years (n=11) was emotional, 5 to 7 years (n=4) physical, and all domains were equally affected in ages 8 to 12 (n=3), and 13 to 18 years (n=2). Incorporating PPC consultation showed improvement in all four domains, especially psychosocial. There was a statistically significant improvement in the quality of life in the physical (p<0.001) as most of the patients enrolled had undergone surgery during counseling. Emotional (p = 0.001), Cognitive (p = 0.032), although nonstatistically significant, an improvement in the Social (p = 0.145) was also observed. For children who had poor prognoses and were likely to succumb to disease, their families were counseled regarding end-of-life care, were provided with oxygen concentrators, and were introduced to the nearest referral center. As a result, the parents felt much more prepared and confident. <br/>Conclusion(s): Involvement of PPC teams in patients with CHD improves their overall quality of life and aids their families with advance care planning, goal setting, medical decision making and end-of-life care. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1017/S1047951124024478" target="_blank" rel="noreferrer noopener">10.1017/S1047951124024478</a> 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). 2024 Adolescent Adult Advance Care Planning anxiety Bodhanwala M Cardiology In The Young Child Clinical Article Cognition conference abstract Congenital Heart Disease Consultation Controlled Study Dinand V Dixit P February List 2025 Human intervention study Jain S Khanna S Male Medical Decision Making Mishra J oxygen concentrator Palliative Therapy Panda B Patient Referral Pediatric Quality of Life Inventory Prabhu SS Prognosis Quality Of Life Reoperation Sumitra V Surgery Terminal Care 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/10.1016/j.jpedsurg.2012.09.042" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpedsurg.2012.09.042</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 Pulmonary metastasectomy in pediatric/adolescent patients with synovial sarcoma: an institutional review Publisher An entity responsible for making the resource available Journal Of Pediatric Surgery Date A point or period of time associated with an event in the lifecycle of the resource 2013 Subject The topic of the resource adolescent; Child; Female; Humans; infant; retrospective studies; Survival Rate; Young Adult; Treatment Outcome; Lung Neoplasms; Preschool; Metastasectomy; Reoperation; Sarcoma; Synovial Creator An entity primarily responsible for making the resource Stanelle EJ; Christison-Lagay ER; Wolden SL; Meyers PA; La Quaglia MP Description An account of the resource PURPOSE: Synovial sarcoma (SS) often metastasizes to the lung; however, the indications for and outcomes of pulmonary metastasectomy have not been evaluated in pediatric/adolescent patients. METHODS: The records of pediatric patients (age <22years) with pathologically confirmed SS and pulmonary metastasis treated between June 1971 and May 2011 at our institution were retrospectively reviewed for the number and type of surgical metastasectomies, tumor characteristics, and survival outcomes. RESULTS: Forty-one patients (mean age: 15.9years) were identified and 31 (76%) underwent at least one metastasectomy. Seventy-two resections (range, 1-8/patient) were performed. Two- and 5-year survival rates after metastasis diagnosis were 65% and 24% for patients who underwent metastasectomy. Patients who did not undergo a metastasectomy survived no more than 2years from the diagnosis of pulmonary disease (P<0.001). Longer time to progression after primary tumor resection (>1year) and complete resection of pulmonary disease correlated with greater OS (P=0.02 and P<0.001, respectively). Palliative debulking did not improve OS. Survival was unaffected by tumor histological subtype, bilateral pulmonary disease, number of surgical resections, or number and size of resected metastatic lesions. CONCLUSION: Pulmonary metastasectomy may be associated with improved survival in pediatric/adolescent patients with SS and pulmonary metastases if complete resection is achieved. 2013-04 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpedsurg.2012.09.042" target="_blank" rel="noreferrer">10.1016/j.jpedsurg.2012.09.042</a> 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). Type The nature or genre of the resource Journal Article 2013 Adolescent Backlog Child Christison-Lagay ER Female Humans Infant Journal Article Journal Of Pediatric Surgery La Quaglia MP Lung Neoplasms Metastasectomy Meyers PA Preschool Reoperation Retrospective Studies Sarcoma Stanelle EJ Survival Rate Synovial Treatment Outcome Wolden SL Young Adult 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 An entity responsible for making the resource available Pediatric Transplantation Date A point or period of time associated with an event in the lifecycle of the resource 2004 Subject The topic of the resource 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 An entity primarily responsible for making the resource 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 An unambiguous reference to the resource within a given context <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 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). 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