A Web-Based Stem Cell Transplant Support System or Standard Care in Young Patients Undergoing Stem Cell Transplant and Their Families



Status:Archived
Conditions:Ovarian Cancer, Cancer, Cancer, Brain Cancer, Blood Cancer, Lymphoma, Psychiatric, Hematology, Leukemia
Therapuetic Areas:Hematology, Oncology, Psychiatry / Psychology
Healthy:No
Age Range:Any
Updated:7/1/2011
Start Date:June 2008

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HSCT-CHESS to Enhance Hematopoietic Transplant Recovery


RATIONALE: A Web site for stem cell transplant health information and support may be
effective in helping parents improve their health-related knowledge, skills, and quality of
life, which may also improve their children's quality of life.

PURPOSE: This randomized phase III trial is studying a Web-based stem cell transplant
support system to see how well it works compared with standard care in families of young
patients undergoing a stem cell transplant.


OBJECTIVES:

Primary

- To evaluate the ability of a Web-based Hematopoietic Stem Cell Transplantation (HSCT-)
Comprehensive Health Enhancement Support System (HSCT-CHESS) to mitigate the impact of
a child's HSCT on the health-related quality of life, family functioning, knowledge,
skills, and processes of care of the accompanying parent.

Secondary

- To explore the potential mechanisms of action of HSCT-CHESS in improving outcomes in
these parents, in terms of parental activation, social support and/or coping skills.

- To explore the impact of HSCT-CHESS on the health-related quality of life of the
pediatric HSCT patient, as reported by the parent and child.

OUTLINE: This is a multicenter study. Pediatric hematopoietic stem cell transplantation
(HSCT) recipients (ages 2 months-18 years) and accompanying parents are asked to complete a
baseline assessment battery by the start of transplant conditioning (the 'run-in' period).
If either member of the participating dyad fails to complete all study measures* during this
time period, the dyad is withdrawn from the study. The dyads are randomized into 1 of 2
intervention arms.

NOTE: *Measures will not be collected from pediatric patients under 5 years of age at
baseline or follow-up.

- Arm I: Each dyad receives institution-specific usual care for 6 months, which typically
includes psychosocial support for the HSCT recipient and individualized or group
education and support for the accompanying parent during the peri-transplant period.
They also receive the Web-based Hematopoietic Stem Cell Transplantation (HSCT-)
Comprehensive Health Enhancement Support System (HSCT-CHESS) intervention for 6 months.
Accompanying parents also may identify a companion to receive access to the HSCT-CHESS
Web site.

The HSCT-CHESS Web site provides ready access to accurate information and resources about
pediatric HSCT, practical tips, organizational tools, and other supportive services for use
during the transplant process. While the Web site is designed primarily for use by the
accompanying parent, it also includes some resources for child and adolescent HSCT
recipients that the parent may choose to share. In addition to collecting data for later
analysis, the Web site tracking system allows for further tailoring of information and
support for the user, principally by time post transplant.

- Arm II: Each dyad receives institution-specific usual care for 6 months as described in
arm I. Accompanying parents also receive a book from the Blood and Marrow Transplant
Information Network (BMT InfoNet).

Each dyad completes quality-of-life assessment (Child Health Ratings Inventory
[CHRIs]-General and CHRIs-HSCT) at day 45, and at 3, 6, 9, and 12 months and CHRIS-General
at baseline. The accompanying parent provides demographic information at baseline and 6
months and completes Patient Health Questionnaire (PHQ-9) for depression screening at
baseline and 6 and 9 months. The accompanying parent also completes other measures for
family and individual coping, social support, process of care, and Internet use at baseline
and 6 and 9 months.


We found this trial at
6
sites
1500 E Duarte Rd
Duarte, California 91010
(626) 256-4673
City of Hope Comprehensive Cancer Center City of Hope is a leading research and treatment...
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Duarte, CA
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450 Brookline Ave
Boston, Massachusetts 2215
(617) 632-3000
Dana-Farber/Harvard Cancer Center at Dana-Farber Cancer Institute Founded in 1997, Dana-Farber/Harvard Cancer Center (DF/HCC) was...
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Boston, MA
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3333 Burnet Avenue # Mlc3008
Cincinnati, Ohio 45229
 1-513-636-4200 
Cincinnati Children's Hospital Medical Center Patients and families from across the region and around the...
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Cincinnati, OH
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1100 Fairview Avenue North
Seattle, Washington 98109
(206) 667-5000
Fred Hutchinson Cancer Research Center At Fred Hutchinson Cancer Research Center, our interdisciplinary teams of...
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Seattle, WA
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Brooklyn, New York 11203
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Brooklyn, NY
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8701 W Watertown Plank Rd
Milwaukee, Wisconsin
(414) 955-8296
Medical College of Wisconsin The Medical College (MCW) of Wisconsin is a major national research...
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Milwaukee, WI
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