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HSCT-CHESS to Enhance Hematopoietic Transplant Recovery

Phase 3
2 Months
18 Years
Not Enrolling
Chronic Myeloproliferative Disorders, Leukemia, Lymphoma, Myelodysplastic Syndromes, Myelodysplastic/Myeloproliferative Neoplasms, Neuroblastoma, Ovarian Cancer, Psychosocial Effects of Cancer and Its Treatment, Sarcoma

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Trial Information

HSCT-CHESS to Enhance Hematopoietic Transplant Recovery



- 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.


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time period, the dyad is withdrawn from the study.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

Inclusion Criteria


- Disease indications for hematopoietic stem cell transplantation (HSCT)

- All transplant types allowed

- Scheduled to receive HSCT within the next 30 days


- Dyad consisting of age-eligible child and parent

- Child patient with an "accompanying parent" who consents to participate

- "Accompanying parent" is defined as the parent/legal guardian who physically
stays with the recipient during the initial HSCT hospitalization and plans to be
present during the follow-up assessments

- If the responsibility for care giving is shared, parents will designate who
will participate (i.e., as study participant)

- No substitutions are permitted once this decision has been made

- Accompanying parent must be ≥ 18 years old

- Possesses a working knowledge of English

- Able to sign consent/assent to participate


- No concurrent participation in another quality-of-life intervention study

Type of Study:


Study Design:

Allocation: Randomized, Intervention Model: Parallel Assignment, Primary Purpose: Supportive Care

Outcome Measure:

Effect of the Hematopoietic Stem Cell Transplantation Comprehensive Health Enhancement Support System (HSCT-CHESS) on health-related quality of life of the accompanying parent at study entry, day 45 and 3, 6, 9, and 12 months

Safety Issue:


Principal Investigator

Susan K. Parsons, MD, MRP

Investigator Role:

Principal Investigator

Investigator Affiliation:

Tufts Medical Center Cancer Center


United States: Institutional Review Board

Study ID:




Start Date:

June 2008

Completion Date:

June 2011

Related Keywords:

  • Chronic Myeloproliferative Disorders
  • Leukemia
  • Lymphoma
  • Myelodysplastic Syndromes
  • Myelodysplastic/Myeloproliferative Neoplasms
  • Neuroblastoma
  • Ovarian Cancer
  • Psychosocial Effects of Cancer and Its Treatment
  • Sarcoma
  • psychosocial effects of cancer and its treatment
  • recurrent childhood large cell lymphoma
  • recurrent childhood lymphoblastic lymphoma
  • recurrent childhood small noncleaved cell lymphoma
  • recurrent/refractory childhood Hodgkin lymphoma
  • accelerated phase chronic myelogenous leukemia
  • atypical chronic myeloid leukemia, BCR-ABL negative
  • blastic phase chronic myelogenous leukemia
  • childhood acute lymphoblastic leukemia in remission
  • childhood acute myeloid leukemia in remission
  • childhood chronic myelogenous leukemia
  • chronic myelomonocytic leukemia
  • chronic phase chronic myelogenous leukemia
  • juvenile myelomonocytic leukemia
  • recurrent childhood acute lymphoblastic leukemia
  • recurrent childhood acute myeloid leukemia
  • relapsing chronic myelogenous leukemia
  • secondary acute myeloid leukemia
  • childhood myelodysplastic syndromes
  • primary myelofibrosis
  • de novo myelodysplastic syndromes
  • disseminated neuroblastoma
  • myelodysplastic/myeloproliferative neoplasm, unclassifiable
  • previously treated childhood rhabdomyosarcoma
  • previously treated myelodysplastic syndromes
  • recurrent childhood rhabdomyosarcoma
  • recurrent neuroblastoma
  • recurrent ovarian germ cell tumor
  • secondary myelodysplastic syndromes
  • Neoplasms
  • Leukemia
  • Lymphoma
  • Myelodysplastic Syndromes
  • Preleukemia
  • Myeloproliferative Disorders
  • Neuroblastoma
  • Ovarian Neoplasms
  • Sarcoma
  • Myelodysplastic-Myeloproliferative Diseases



Fred Hutchinson Cancer Research CenterSeattle, Washington  98109
Children's Hospital of PhiladelphiaPhiladelphia, Pennsylvania  19104
Medical College of Wisconsin Cancer CenterMilwaukee, Wisconsin  53226
City of Hope Comprehensive Cancer CenterDuarte, California  91010
Cincinnati Children's Hospital Medical CenterCincinnati, Ohio  45229-3039
Dana-Farber/Harvard Cancer Center at Dana-Farber Cancer InstituteBoston, Massachusetts  02115