Quality of Life of Adult Cancer Survivors Who Have Undergone a Previous Bone Marrow or Peripheral Stem Cell Transplant for a Childhood Hematologic Cancer

• Neuroendocrine status of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18
• Cognitive capability of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18
• Physical capability of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18
• Psychosocial status of disease-free childhood transplant patients at 5 years after transplant and ≥ age 18

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.

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.

• Leukemia
• Lymphoma
• Myelodysplastic Syndromes
• Quality of Life

• Procedure: cognitive assessment
• Procedure: management of therapy complications
• Procedure: psychosocial assessment and care
• Procedure: quality-of-life assessment

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