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

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time period, the dyad is withdrawn from the study.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.