NCT01046305

Brief Summary

Objectives: The objective of this study is to measure and delineate the symptom burden experienced by patients with chronic myeloid leukemia (CML). The Primary Aim is to develop and validate an M. D. Anderson Symptom Inventory (MDASI) module (the MDASI-CML), compliant with FDA standards for patient-reported outcomes (PROs), to measure the severity of multiple symptoms and the impact of these symptoms on daily functioning in patients with CML. The Secondary Aims are:

  1. 1.to develop a detailed description of the severity and interference with daily activities of symptoms experienced by patients with CML;
  2. 2.to assess the impact of symptom severity in CML on standard functioning and quality of life (QOL) measures including Eastern Cooperative Oncology Group (ECOG) Performance Status and single-item QOL scale;
  3. 3.to evaluate the MDASI-CML as an estimate of functional status and QOL in patients with CML;
  4. 4.to identify common clusters of symptoms and symptom patterns occurring over multiple measurement time points in patients with CML;

Trial Health

43
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
210

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Nov 2009

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

November 1, 2009

Completed
2 months until next milestone

First Submitted

Initial submission to the registry

January 8, 2010

Completed
3 days until next milestone

First Posted

Study publicly available on registry

January 11, 2010

Completed
10.9 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

November 30, 2020

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

November 30, 2020

Completed
Last Updated

January 7, 2020

Status Verified

January 1, 2020

Enrollment Period

11.1 years

First QC Date

January 8, 2010

Last Update Submit

January 4, 2020

Conditions

Keywords

Chronic Myeloid LeukemiaCMLSymptom BurdenM. D. Anderson Symptom InventoryMDASI-CMLSeverityInterferenceQuestionnaireInterview

Outcome Measures

Primary Outcomes (1)

  • Symptom Burden Experienced by CML Patients

    Patients followed over 1 year with MDASI-CML questionnaire

Study Arms (3)

Part 1: Interview & Questionnaires

Patients interviews and questionnaires about CML symptoms once.

Behavioral: Interview & Questionnaires

Part 2: Symptoms Rating

Importance of symptoms to CML patients rated by physicians, nurses, patients, and caregivers.

Behavioral: Rating Questionnaire

Part 3: MDASI-CML Questionnaires

Patients questionnaires about CML symptoms over 1 year using M. D. Anderson Symptom Inventory (MDASI) module (the MDASI-CML)

Behavioral: MDASI-CML Questionnaire

Interventions

30 Minute Interview about what it is like to have CML, followed by symptom questionnaire, quality-of-life questionnaire, and demographic questions taking another 10 minutes for all 3 questionnaires.

Also known as: Survey
Part 1: Interview & Questionnaires

Questionnaire developed in Part 1 to rate the relevance of symptom items, given to 3-5 physicians, 3-5 nurses, 2-4 patients and their family caregivers, taking about 10 minutes.

Also known as: Survey, MDASI-CML
Part 2: Symptoms Rating

Patient questionnaires about CML symptoms over 1 year, completed in person or using Interactive Voice Response (IVR) system every 2 weeks.

Also known as: Survey, M. D. Anderson Symptom Inventory, MDASI, MDASI-CML
Part 3: MDASI-CML Questionnaires

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Chronic myeloid leukemia (CML) patients and their caregivers, 18 years of age or older, physicians and nurses.

You may qualify if:

  • years of age or older (Patient and family caregiver only)
  • Ability to speak and read English (All participants)
  • Live in the United States (Patient Phase 3 only)
  • Diagnosis of Philadelphia chromosome positive CML confirmed by pathological and cytogenetic analysis (Patient only)
  • Being followed at M.D. Anderson Cancer Center (Patient only)
  • Consent to participate (All participants)
  • Treatment for CML for at least 1 year (Patient Phase 2 only)
  • Family caregiver also willing to receive packet for expert panel participation (Patient Phase 2 only)
  • Physician or nurse with at least 5 years experience caring for patients with CML (Professional expert only)
  • At least one publication in the last 5 years dealing with CML (Physician professional expert only)
  • Identification as a family caregiver by a patient with CML (Family caregiver only)
  • Patient also willing to receive packet for expert panel participation (Family caregiver only)

You may not qualify if:

  • Medical condition or impaired performance status that would preclude participation in the study (Patient only)
  • Diagnosis of active psychosis or severe cognitive impairment as determined by primary physician (Patient only)
  • Active treatment (systemic drug therapy or radiation therapy) for a second malignancy (Patient only Phase 3)

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Texas MD Anderson Cancer Center

Houston, Texas, 77030, United States

Location

Related Publications (1)

  • Williams LA, Garcia Gonzalez AG, Ault P, Mendoza TR, Sailors ML, Williams JL, Huang F, Nazha A, Kantarjian HM, Cleeland CS, Cortes JE. Measuring the symptom burden associated with the treatment of chronic myeloid leukemia. Blood. 2013 Aug 1;122(5):641-7. doi: 10.1182/blood-2013-01-477687. Epub 2013 Jun 18.

Related Links

MeSH Terms

Conditions

LeukemiaLeukemia, Myelogenous, Chronic, BCR-ABL Positive

Interventions

Interviews as TopicSurveys and Questionnaires

Condition Hierarchy (Ancestors)

Neoplasms by Histologic TypeNeoplasmsHematologic DiseasesHemic and Lymphatic DiseasesLeukemia, MyeloidMyeloproliferative DisordersBone Marrow DiseasesChronic DiseaseDisease AttributesPathologic ProcessesPathological Conditions, Signs and Symptoms

Intervention Hierarchy (Ancestors)

Data CollectionEpidemiologic MethodsInvestigative TechniquesHealth Care Evaluation MechanismsQuality of Health CareHealth Care Quality, Access, and EvaluationPublic HealthEnvironment and Public Health

Study Officials

  • Loretta A. Williams, PHD, MSN

    M.D. Anderson Cancer Center

    STUDY CHAIR

Study Design

Study Type
observational
Observational Model
CASE CONTROL
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

January 8, 2010

First Posted

January 11, 2010

Study Start

November 1, 2009

Primary Completion

November 30, 2020

Study Completion

November 30, 2020

Last Updated

January 7, 2020

Record last verified: 2020-01

Locations