Use of a virtual community as a psychosocial support system in pediatric transplantation.

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 Transplant

authors

Bers MU,Beals LM,Chau C,Satoh K,Blume ED,DeMaso DR,Gonzalez-Heydrich J

doi

10.1111/j.1399-3046.2010.01271.x

subject

Has Abstract

pub_date

2010-03-01 00:00:00

pages

261-7

issue

2

eissn

1397-3142

issn

1399-3046

pii

PTR1271

journal_volume

14

pub_type

杂志文章
  • Pediatric split liver transplantation after Fontan procedure in left isomerism combined with biliary atresia: a case report.

    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

    authors: Youn JK,Lee JM,Yi NJ,Choi YR,Suh SW,You T,Lee KW,Jung CW,Lee JW,Bae EJ,Ko JS,Kim WH,Park KW,Suh KS

    更新日期:2014-12-01 00:00:00

  • The challenge of long-term follow-up of survivors of childhood acute leukemia after hematopoietic stem cell transplantation in resource-limited countries: A single-center report from Brazil.

    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

    authors: Marinho DH,Ribeiro LL,Nichele S,Loth G,Koliski A,Mousquer RTG,Funke VAM,Page K,Fasth A,Pasquini R,Boguszewski MCDS,Bonfim C

    更新日期:2020-06-01 00:00:00

  • Behavioral economics-A framework for donor organ decision-making in pediatric heart transplantation.

    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

    authors: Butler A,Chapman G,Johnson JN,Amodeo A,Böhmer J,Camino M,Davies RR,Dipchand AI,Godown J,Miera O,Pérez-Blanco A,Rosenthal DN,Zangwill S,Kirk R

    更新日期:2020-05-01 00:00:00

  • Effect of CYP3A5*1 expression on tacrolimus required dose for transplant pediatrics: A systematic review and meta-analysis.

    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

    authors: Hendijani F,Azarpira N,Kaviani M

    更新日期:2018-06-19 00:00:00

  • Prevalence and subtypes of BK virus in pediatric renal transplant recipients in Russia.

    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

    authors: Momynaliev KT,Gorbatenko EV,Shevtsov AB,Gribanov OG,Babenko NN,Kaabak MM

    更新日期:2012-03-01 00:00:00

  • Bone mineral disorders in pediatric and adolescent renal transplant recipients.

    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

    authors: Derakhshan A,Behbahan AG,Lotfi M,Omrani GH,Fallahzadeh MH,Basiratnia M,Al-Hashemi GH

    更新日期:2011-06-01 00:00:00

  • Risk for post-transplant lymphoproliferative disorder after polyclonal antibody induction in kidney transplantation.

    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

    authors: Dharnidharka VR,Stevens G

    更新日期:2005-10-01 00:00:00

  • Intravenous and oral sequential itraconazole antifungal prophylaxis in paediatric stem cell transplantation recipients: a pilot study for evaluation of safety and efficacy.

    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

    authors: Grigull L,Kuehlke O,Beilken A,Sander A,Linderkamp C,Schmid H,Seidemann K,Sykora KW,Schuster FR,Welte K

    更新日期:2007-05-01 00:00:00

  • Hepatitis C viral recurrence in a pediatric patient following liver transplantation.

    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

    authors: Udell IW,Barshes NR,Finegold MJ,Lee TC,Scott JD,Carter B,Karpen S,Goss JA

    更新日期:2006-08-01 00:00:00

  • Use of tissue expansion to facilitate liver and small bowel transplant in young children with contracted abdominal cavities.

    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

    authors: Vidyadharan R,van Bommel AC,Kuti K,Gupte GL,Sharif K,Richard BM

    更新日期:2013-11-01 00:00:00

  • Preliminary quantitative investigation of predictors of treatment non-adherence in pediatric transplantation: a brief report.

    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

    authors: Kahana SY,Frazier TW,Drotar D

    更新日期:2008-09-01 00:00:00

  • Tracking of blood pressure and its impact on graft function in pediatric renal transplant patients.

    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

    authors: Silverstein DM,Leblanc P,Hempe JM,Ramcharan T,Boudreaux JP

    更新日期:2007-12-01 00:00:00

  • Bilateral lung transplant in Gauchers type-1 disease.

    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

    authors: Rao AR,Parakininkas D,Hintermeyer M,Segura AD,Rice TB

    更新日期:2005-04-01 00:00:00

  • Eight-year follow-up in pediatric living donor kidney recipients receiving alemtuzumab induction.

    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

    authors: Kaabak MM,Babenko NN,Shapiro R,Maschan AA,Zokoev AK,Schekaturov SV,Vyunkova JN,Dymova OV

    更新日期:2017-08-01 00:00:00

  • EBV-negative lymphoproliferative disease with hyper-IgA, in a child with combined liver and small bowel transplantation.

    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

    authors: Robert CD,Lacaille F,Canioni D,Quartier-dit-Maire P,Talbotec C,Goulet O

    更新日期:2004-06-01 00:00:00

  • A case of Chediak-Higashi syndrome presented with accelerated phase could be treated effectively by unrelated cord blood transplantation.

    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

    authors: Zhang Y,Gao Z,Yu X

    更新日期:2017-11-01 00:00:00

  • Factors predicting health-related quality of life in pediatric liver transplant recipients in the functional outcomes group.

    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

    authors: Alonso EM,Martz K,Wang D,Yi MS,Neighbors K,Varni JW,Bucuvalas JC,Studies of Pediatric Liver Transplantation (SPLIT) Functional Outcomes Group (FOG).

    更新日期:2013-11-01 00:00:00

  • Eltrombopag for treatment of thrombocytopenia after allogeneic hematopoietic cell transplantation in children: Single-centre experience.

    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

    authors: Yaman Y,Elli M,Şahin Ş,Özdilli K,Bilgen H,Bayram N,Nepesov S,Anak S

    更新日期:2021-01-16 00:00:00

  • Immunization practices among pediatric transplant hepatologists.

    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

    authors: Feldman AG,Kempe A,Beaty BL,Sundaram SS,Studies of Pediatric Liver Transplantation (SPLIT) Research Group.

    更新日期:2016-12-01 00:00:00

  • New insights into the functions of B cells.

    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

    authors: Balin SJ,Platt JL,Cascalho M

    更新日期:2008-08-01 00:00:00

  • Predictors of neuropsychological functioning and medication adherence in pediatric heart transplant recipients referred for neuropsychological evaluation.

    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

    authors: Wolfe KR,Kelly SL,Steinberg E,Pliego J,Everitt MD

    更新日期:2020-02-01 00:00:00

  • Successful second bone marrow transplantation in Omenn's syndrome after bone marrow aplasia: a case report.

    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

    authors: Wahadneh A,Bin-Dahman H,Habahbeh Z,Abu-Shukear M,Ajarmeh M,Zyood R,Khaled A

    更新日期:2012-03-01 00:00:00

  • The effect of peri-transplant plasmapheresis in the prevention of recurrent FSGS.

    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

    authors: Verghese PS,Rheault MN,Jackson S,Matas AJ,Chinnakotla S,Chavers B

    更新日期:2018-05-01 00:00:00

  • Sodium ferric gluconate for post-transplant anemia in pediatric and young adult renal transplant recipients.

    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

    authors: Gillespie RS,Symons JM

    更新日期:2005-02-01 00:00:00

  • Recurrence of non-alcoholic steatohepatitis after liver transplantation in a 13-yr-old boy.

    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

    authors: Jankowska I,Socha P,Pawlowska J,Teisseyre M,Gliwicz D,Czubkowski P,Kalicinski P,Cielecka-Kuszyk J,Socha J

    更新日期:2007-11-01 00:00:00

  • Surgical treatment of primary liver tumors in children: outcomes analysis of resection and transplantation in the SEER database.

    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

    authors: McAteer JP,Goldin AB,Healey PJ,Gow KW

    更新日期:2013-12-01 00:00:00

  • Liver transplantation for hepatoblastoma: indications and contraindications in the modern era.

    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

    authors: Otte JB,de Ville de Goyet J,Reding R

    更新日期:2005-10-01 00:00:00

  • Use of genetic risks in pediatric organ transplantation listing decisions: A national survey.

    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

    authors: Graf M,Char D,Hanson-Kahn A,Magnus D

    更新日期:2019-06-01 00:00:00

  • Outcome of allogeneic hematopoietic stem cell transplantation for children with acute myelogenous leukemia in second complete remission: single center experience.

    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

    authors: Ishaqi MK,Afzal S,Dupuis A,Doyle J,Gassas A

    更新日期:2009-12-01 00:00:00

  • Infection profile in children and adolescents with bone marrow failures treated with allogeneic hematopoietic stem cell transplantation.

    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

    authors: Zaucha-Prażmo A,Zawitkowska J,Lejman M,Kowalczyk JR,Czyżewski K,Dziedzic M,Pieczonka A,Zając-Spychała O,Goździk J,Frączkiewicz J,Salamonowicz M,Gorczyńska E,Kałwak K,Wachowiak J,Styczyński J

    更新日期:2019-12-01 00:00:00