Clinical Trial 18982

Cancer Type: Malignant Hematology
Interventions:

Study Type: Other
Phase of Study: NA
Investigators:

  • Heather Jim

Overview

Study Title

The Roles of Education and Patient Engagement to Improve Symptom Management and the Quality of Life for Patients with Relapsed/Refractory Chronic Lymphocytic Leukemia

Summary

This research study is looking at the effectiveness, acceptability, and usability of web based technology to report treatment side effects and receive care instructions.

Objective

4.1 Primary Study Aims: 4.1.1. To describe patients' perception of the overall effectiveness, acceptability, and usability of bi- directional web based technology to self-report symptom prevalence and severity and receive management recommendations. 4.1.2 To describe the longitudinal symptom experiences of patients across CLL treatments in the relapsed/refractory setting by collecting symptom burden (prevalence and severity), psychosocial distress, and quality of life. 4.2 Secondary Study Aims: 4.2.1. To understand the patterns of change in provider decision making over time in the treatment of patients with relapsed/refractory CLL. 4.2.2 To understand causes for unanticipated office and ED visits and hospitalizations with associated patient-reported chief complaints. Data will be analyzed across the entire patient sample and correlated with treatment selection and fit-frailty scores.

Inclusion Criteria

  • Diagnosis of relapsed/refractory chronic lymphocytic leukemia (CLL)
  • 18 years of age or older
  • On active treatment
  • Access to the internet
  • Able to understand English

  • Exclusion Criteria

  • Any patient who cannot understand English
  • Any prisoner and/or other vulnerable person as defined by NIH (45 CFR 46, Subpart B, C, and D)