Clinical trial NCT00126477: Quality of Life of Adult Cancer Survivors Who Have Undergone a Previous Bone Marrow or Peripheral Stem Cell Transplant for a Childhood Hematologic Cancer
Official title: The Quality of Life of Adult Survivors Who Received a Marrow Transplant as a Child
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Leukemia
Lymphoma
Myelodysplastic Syndromes
Quality of Life
Keywords: quality of life
de novo myelodysplastic syndromes
previously treated myelodysplastic syndromes
secondary myelodysplastic syndromes
juvenile myelomonocytic leukemia
childhood Hodgkin lymphoma
childhood lymphoblastic lymphoma
childhood large cell lymphoma
childhood small noncleaved cell lymphoma
childhood acute lymphoblastic leukemia in remission
childhood acute myeloid leukemia in remission
childhood chronic myelogenous leukemia
Lead sponsor: Fred Hutchinson Cancer Center
Sponsor class: OTHER
Collaborators: name: National Cancer Institute (NCI)
First posted: 2005-08-04
Enrollment: 750
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no

Brief summary: RATIONALE: Studying quality of life in cancer survivors may help determine the long-term effects of hematologic cancer and may help improve the quality of life for future cancer survivors.

PURPOSE: This clinical trial is studying the quality of life of adult cancer survivors who have undergone a previous bone marrow or peripheral stem cell transplant for a childhood hematologic cancer.

Detailed description: OBJECTIVES:

* Determine the extent to which adult cancer survivors who have undergone prior bone marrow or peripheral blood stem cell transplantation for a pediatric hematologic malignancy require ongoing health care and whether these needs change with increasing time after transplantation.
* Correlate physical capabilities, body image, physical limitations, including sexuality issues which alter or influence lifestyle, with time after transplantation in these patients.
* Determine whether cognitive abilities relative to memory and neurobehavioral ratings change with increasing time after transplantation in these patients.
* Correlate social and relationship abilities with length of time after transplantation in these patients.

OUTLINE: Patients and siblings complete a self-report quality of life questionnaire, including outcome assessments of neuroendocrine function, cognitive abilities, physical capability, and psychosocial behavior.

PROJECTED ACCRUAL: Approximately 750 patients (375 adult cancer survivors \[case group\] and 375 siblings \[control group\]) will be accrued for this study within 7 years.

Eligibility criteria: DISEASE CHARACTERISTICS:

* Case group

  * Previously treated with an allogeneic, unrelated, syngeneic, or autologous bone marrow or peripheral blood stem cell transplantation for a hematologic malignancy ≥ 5 years ago while enrolled on 1 of the following protocols:

    * FHCRC-160.06
    * FHCRC-179.07T
    * FHCRC-446.03T
    * FHCRC-661.04
    * FHCRC-697.00
    * FHCRC-796.00
    * FHCRC-843.00
  * Disease-free survivor
  * Under 18 years of age at time of transplantation
  * Any prior preparative regimen allowed
* Control group

  * Sex-matched sibling within 5 years of patient's age\*
  * No chronic illnesses (e.g., cancer, diabetes, or asthma) that require medication
  * No allergies that limit physical activity NOTE: \*If such a sibling is not available, but another sibling is available, then that sibling would be asked to nominate a friend or relative of the same gender as the patient who is also within 5 years of the patient's age; the patient must consent in order for the control subject to participate

PATIENT CHARACTERISTICS:

Age

* See Disease Characteristics
* 18 and over

Performance status

* Not specified

Life expectancy

* Not specified

Hematopoietic

* Not specified

Hepatic

* Not specified

Renal

* Not specified

Other

* Must be able to speak, read, and write English

PRIOR CONCURRENT THERAPY:

Biologic therapy

* See Disease Characteristics

Chemotherapy

* Not specified

Endocrine therapy

* Not specified

Radiotherapy

* Not specified

Surgery

* Not specified

Primary outcomes:
measure: Neuroendocrine status of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18
measure: Cognitive capability of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18
measure: Physical capability of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18
measure: Psychosocial status of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18
Secondary outcomes:
Other outcomes:
Locations:
city: Seattle
country: United States
facility: Fred Hutchinson Cancer Research Center
state: Washington
Study officials:
affiliation: Fred Hutchinson Cancer Center
name: Jean E. Sanders, MD
role: PRINCIPAL_INVESTIGATOR
References: