Abstract:
:Despite significant interest by pediatric transplant patients in meeting others who have undergone transplantation, geographic distances combined with their daily routines make this difficult. This mixed-method study describes the use of Zora, a Web-based virtual community designed to create a support system for these patients. The Zora software allows participants to create a graphical online virtual city with houses expressing their individuality and objects conveying their concerns and personal stories. Zora allows real-time chat between participants further facilitating communication. Twenty-two post-transplant patients used Zora over nine months. The median number of log ons per participant was 19.50 times (q1 = 5.25, q3 = 41.50), and each participant spent a median of 12.48 h (q1 = 2.13, q3 = 25.55) logged into the program. This represented a median of 18.27 min/wk (q1 = 6.88, q3 = 37.40) per participant. Users created a total of 3736 objects (median/participant = 12.5, q1 = 2.25, q3 = 30) and created 66 virtual houses (median/participant = 2.00, q1 = 1.00, q3 = 3.00). In addition, a total of 14,444 lines of chat were recorded (median/participant = 228.5, q1 = 30.00, q3 = 663.25), and a total 278 messages were sent between users (median/participant = 3.50, q1 = 0.25, q3 = 15.5). Qualitative data show the preliminary success of the project, as three major themes emerged: (i) increased sense of normalcy for the patients, (ii) enhanced sense of self and contribution to the community, and (iii) increased social network. There were no instances of harmful interactions in the virtual world. This study demonstrates the feasibility and safety of a virtual community as a potential psychosocial intervention for post-transplant adolescents.
journal_name
Pediatr Transplantjournal_title
Pediatric transplantationauthors
Bers MU,Beals LM,Chau C,Satoh K,Blume ED,DeMaso DR,Gonzalez-Heydrich Jdoi
10.1111/j.1399-3046.2010.01271.xsubject
Has Abstractpub_date
2010-03-01 00:00:00pages
261-7issue
2eissn
1397-3142issn
1399-3046pii
PTR1271journal_volume
14pub_type
杂志文章abstract::LI is a subset of the heterotaxy syndrome and a rare birth defect that involves the heart and other organs. It can be combined with extracardiac abnormalities, especially BA. CHD can be associated with LI in up to 15% of cases, although it is rare in BA. Pediatric LT for a child with ESLD due to BA combined with LI an...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12364
更新日期:2014-12-01 00:00:00
abstract::With the number of long-term HSCT survivors steadily increasing, attention needs to be focused on the late complications and quality of life. We therefore analyzed the outcome of 101 pediatric patients (<18 years old at the time of HSCT) transplanted for acute leukemia between 1981 and 2015 at Complexo Hospital de Clí...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13691
更新日期:2020-06-01 00:00:00
abstract::The high discard rate of pediatric donor hearts presents a major challenge for children awaiting heart transplantation. Recent literature identifies several factors that contribute to the disparities in pediatric donor heart usage, including regulatory oversight, the absence of guidelines on pediatric donor heart acce...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1111/petr.13655
更新日期:2020-05-01 00:00:00
abstract::This systematic review was designed to find out optimal tacrolimus dose in pediatrics according to their CYP3A5*1 genotype by performing meta-analysis. PubMed, Scopus, ISI web of Science, ProQuest, Cochrane library, and clinicaltrail.gov were systematically searched to find studies in which tacrolimus dose and/or bloo...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1111/petr.13248
更新日期:2018-06-19 00:00:00
abstract::BKV reactivation is associated with impaired graft function in kidney transplant patients. The objective of our study was to determine the prevalence of BKV infection in consecutive pediatric kidney transplant recipients at our center. Fifty-eight pediatric kidney transplant recipients were studied. The mean age at sc...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2011.01640.x
更新日期:2012-03-01 00:00:00
abstract::Incomplete resolution of abnormalities of mineral metabolism associated with CRF results in the relatively high prevalence of ROD in pediatric kidney recipients. This non-randomized, cross-sectional, and analytic-descriptive study on bone density, vitamin D, and mineral metabolism was performed in 57 children and adol...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2011.01492.x
更新日期:2011-06-01 00:00:00
abstract::The adjusted relative risk (aRR) for development of post-transplant lymphoproliferative disorder (PTLD) is higher in kidney transplant recipients receiving monoclonal antibody induction therapy, but the aRR between the different available polyclonal agents has not been investigated in detail. We analyzed data from the...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00361.x
更新日期:2005-10-01 00:00:00
abstract::This single-centre, retrospective, observational pilot study was performed to evaluate the safety and efficacy of intravenous and oral itraconazole prophylaxis in paediatric haematopoietic stem cell transplantation (HCT). Study end-points were proven invasive fungal infection (IFI), survival, adverse reactions and gra...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2006.00643.x
更新日期:2007-05-01 00:00:00
abstract::Hepatitis C virus (HCV) infections are known to have a more benign course in children than in adults. Although the natural history of HCV recurrence after liver transplantation has been well studied in adult patients, much less is known about HCV recurrence after liver transplantation in pediatric patients. Herein, we...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2006.00519.x
更新日期:2006-08-01 00:00:00
abstract::Liver and small bowel transplant is an established treatment for infants with IFALD. Despite organ reduction techniques, mortality on the waiting list remains high due to shortage of size-matched pediatric donors. Small abdominal cavity volume due to previous intestinal resection poses a significant challenge to achie...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12138
更新日期:2013-11-01 00:00:00
abstract::The examination of predictors of non-adherence in transplantation populations offers the potential to identify high-risk individuals and concomitantly generate effective adherence-promoting interventions. The present paper aggregated quantitative estimates of various correlates of treatment adherence in studies of ped...
journal_title:Pediatric transplantation
pub_type: 杂志文章,meta分析
doi:10.1111/j.1399-3046.2007.00864.x
更新日期:2008-09-01 00:00:00
abstract::We studied tracking of BP and its impact on GFR in 44 PRTP followed for 56 months. Three months PT 77% had elevated SBP percentile. First year SBP and DBP correlated positively with final values (p < 0.0001, 0.0002, respectively). Pretransplant and three month PT SBP correlated positively (p = 0.02). At one yr, SBP an...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00753.x
更新日期:2007-12-01 00:00:00
abstract::We report a case of a patient who received a bilateral lung transplant for end-stage lung disease secondary to Gauchers type-1 disease with no evidence of recurrence of the disease in the transplanted lung. ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00251.x
更新日期:2005-04-01 00:00:00
abstract::Recipient lymphocytes are crucial for direct and indirect pathways of allorecognition. We proposed that the administration of alemtuzumab several weeks pretransplantation could eradicate peripheral lymphatic cells and promote donor-specific acceptance. This was a single-center, retrospective review of 101 consecutive ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12941
更新日期:2017-08-01 00:00:00
abstract::A 4-year-old boy presented 14 months after liver and small bowel transplantation with fever, diarrhea, elevated liver enzymes, thrombocytopenia and autoantibodies. Total gammaglobulins level was normal but the level of plasma IgA1 was very high. The blood PCR for Epstein-Barr virus (EBV) was negative. The ileal biopsy...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2004.00174.x
更新日期:2004-06-01 00:00:00
abstract::CHS is a rare immunodeficiency syndrome with defects in the functions of cytotoxic cells and neutrophils. Approximately 85% of patients with CHS undergo an AP within the first decade, which is similar to FHLH. Chemotherapy could induce transient remission, but only allogeneic HCT could correct the underlying genetic d...
journal_title:Pediatric transplantation
pub_type:
doi:10.1111/petr.13014
更新日期:2017-11-01 00:00:00
abstract::Data from 997 pediatric LT recipients were used to model demographic and medical variables as predictors of lower levels of HRQOL. Data were collected through SPLIT FOG project. Patients were between 2 and 18 yr of age and survived LT by at least 12 months. Parents and children (age ≥ 8 yr) completed PedsQL™ 4.0 Gener...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12126
更新日期:2013-11-01 00:00:00
abstract::Delayed recovery of thrombocytopenia is a well-known complication after allogeneic HSCT. Eltrombopag (ELT), a thrombopoietin receptor agonist (TRAs), induces platelet maturation and release. Mostly conducted in adults, some of the previous studies have shown that ELT seems to enhance platelet recovery for post-allogen...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13962
更新日期:2021-01-16 00:00:00
abstract::Vaccination of pediatric liver transplant candidates and recipients represents an opportunity to decrease infectious complications following transplant. Although vaccine recommendations exist, studies have shown that many transplant candidates and recipients are under-immunized. The goals of this study were to assess ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12765
更新日期:2016-12-01 00:00:00
abstract::Organ transplants between genetically different individuals elicit powerful immune responses that invariably cause rejection in the absence of immune suppression. Among the immune responses elicited by organ allografts, B-cell responses causing antibody-mediated rejection are one of the most vexing. However, recent ad...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00867.x
更新日期:2008-08-01 00:00:00
abstract::Children who undergo heart transplantation are at risk for long-term neurodevelopmental sequelae secondary to heart disease and its treatment. Detailed neuropsychological profiles in clinical sample status post-pediatric heart transplantation are sparse in the literature, and there is little information regarding pred...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13615
更新日期:2020-02-01 00:00:00
abstract::Omenn's syndrome is a rare inherited variant of SCID. It is inevitably fatal, unless treated by bone marrow or stem cell transplantation. However, treatment-related complications and graft rejection are major obstacles to the success of transplantation. In this report, we describe an eight-month-old baby with Omenn's ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01413.x
更新日期:2012-03-01 00:00:00
abstract::Many pediatric centers utilize a variety of protocols including preemptive plasmapheresis to prevent the recurrence of FSGS post-transplant. But the effectiveness of this expensive, time-consuming process of plasmapheresis in the prevention of FSGS recurrence is still unclear. We retrospectively reviewed all pediatric...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13154
更新日期:2018-05-01 00:00:00
abstract::Post-transplant anemia is a widespread problem among pediatric renal transplant recipients. Many clinicians treat post-transplant anemia in a manner similar to treatment of anemia in dialysis patients, including the use of intravenous iron, such as sodium ferric gluconate (SFG). Data on pediatric dosing of SFG are lim...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00258.x
更新日期:2005-02-01 00:00:00
abstract::Nonalcoholic steatohepatitis (NASH) is the most severe form of non-alcoholic fatty liver disease (NAFLD). The aim of our study was to highlight NASH as a rare but possible problem in children. We present a case of 13-yr-boy with a well-established diagnosis of liver cirrhosis secondary to NASH, who underwent orthotopi...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00767.x
更新日期:2007-11-01 00:00:00
abstract::Adjusted survival outcomes following hepatic resection and transplantation for pediatric liver tumors have not been compared. To address this question, we conducted a retrospective cohort study using the SEER registry. While SEER lacks certain specifics regarding staging, chemotherapy, comorbidities, and recurrence, i...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12144
更新日期:2013-12-01 00:00:00
abstract::In the past 20 yr, a dramatic improvement has been achieved in the outcome of children with hepatoblastoma by combining cisplatin based chemotherapy and surgery. Treatment of patients in the USA is an exception to the rule that all patients should receive neoadjuvant chemotherapy. It is paramount that surgical resecti...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00354.x
更新日期:2005-10-01 00:00:00
abstract::There is a limited supply of organs for all those who need them for survival. Thus, careful decisions must be made about who is listed for transplant. Studies show that manifesting genetic disease can impact listing eligibility. What has not yet been studied is the impact genetic risks for future disease have on a pat...
journal_title:Pediatric transplantation
pub_type: 杂志文章,多中心研究
doi:10.1111/petr.13402
更新日期:2019-06-01 00:00:00
abstract::We reviewed 26 consecutive patients with AML who were transplanted in second CR2 between 1994 and 2005. The most common conditioning regimen was CY and TBI. Median age at transplant was 8.9 yr (range 2.2-18.2). Nine patients received related donor, 16 patients received unrelated donors, and one patient received unrela...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2008.01101.x
更新日期:2009-12-01 00:00:00
abstract:BACKGROUND:The objective of the study was to analyze the profile of infections in children with BMF following alloHCT. METHODS:Data of 169 consecutive children with inherited and acquired BMF treated with alloHCT between 2012 and 2017 in Polish pediatric transplant departments were analyzed in registry-based retrospec...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13592
更新日期:2019-12-01 00:00:00