Leukemia, Lymphoma, Myelodysplastic Syndromes, Quality of Life
Conditions
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
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.
Interventions
PROCEDUREquality-of-life assessment
PROCEDUREmanagement of therapy complications
PROCEDUREpsychosocial assessment and care
PROCEDUREcognitive assessment
Sponsors
National Cancer Institute (NCI)
Fred Hutchinson Cancer Center
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion 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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 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 | — |
Countries
United States
Outcome results
None listed