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

The Quality of Life of Adult Survivors Who Received a Marrow Transplant as a Child

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.

Study Overview

• Status: Completed
• Conditions: Quality of Life; Lymphoma; Myelodysplastic Syndromes; Leukemia
• Intervention / Treatment: Procedure: psychosocial assessment and care; Procedure: quality-of-life assessment; Procedure: cognitive assessment; Procedure: management of therapy complications

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.

• Study Type: Observational
• Enrollment (Anticipated): 750

Contacts and Locations

Study Locations

• United States
  • Washington
    • Seattle, Washington, United States, 98109-1024
      • Fred Hutchinson Cancer Research Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

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

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure
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

Collaborators and Investigators

• Sponsor: Fred Hutchinson Cancer Center
• Collaborators: National Cancer Institute (NCI)
• Investigators: Principal Investigator: Jean E. Sanders, MD, Fred Hutchinson Cancer Center

Study record dates

Study Major Dates

• Study Start: March 1, 1996
• Primary Completion (Actual): April 1, 2007
• Study Completion (Actual): March 1, 2010

Study Registration Dates

• First Submitted: August 2, 2005
• First Submitted That Met QC Criteria: August 2, 2005
• First Posted (Estimate): August 4, 2005

Study Record Updates

• Last Update Posted (Estimate): May 1, 2013
• Last Update Submitted That Met QC Criteria: April 29, 2013
• Last Verified: April 1, 2013

More Information

Terms related to this study

• Keywords: quality of life; de novo myelodysplastic syndromes; previously treated myelodysplastic syndromes; secondary myelodysplastic syndromes; childhood acute lymphoblastic leukemia in remission; childhood acute myeloid leukemia in remission; juvenile myelomonocytic leukemia; childhood chronic myelogenous leukemia; childhood large cell lymphoma; childhood lymphoblastic lymphoma; childhood small noncleaved cell lymphoma; childhood Hodgkin lymphoma
• Additional Relevant MeSH Terms: Pathologic Processes; Immune System Diseases; Neoplasms by Histologic Type; Neoplasms; Lymphoproliferative Disorders; Lymphatic Diseases; Immunoproliferative Disorders; Disease; Bone Marrow Diseases; Hematologic Diseases; Precancerous Conditions; Lymphoma; Syndrome; Myelodysplastic Syndromes; Leukemia; Preleukemia
• Other Study ID Numbers: 1098.00; FHCRC-1098.00; CDR0000434793 (Registry Identifier: PDQ)