Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)
Start Date
4/4/2024
Completion Date
1/31/2028
Summary
There is a pressing need to measure patient-reported symptoms in patients of all ages diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). This study aims to measure longitudinal symptom burden and treatment tolerability utilizing validated patient-reported outcomes (PROs) instruments. Primary Objective: * To develop the data collection infrastructure required to prospectively collect longitudinal electronic patient-reported outcomes (PROs) survey instruments in adult and pediatric patients diagnosed with NLPHL. Secondary Objective: * To examine differences in baseline and longitudinal changes in PROs based on disease characteristics, disease status, and treatment strategies among adult and pediatric patients diagnosed with NLPHL.
Detailed Description
The broad aim of this study is to develop the foundational data management infrastructure required to prospectively collect longitudinal electronic patient-reported outcomes (PROs) survey instruments in adult and pediatric patients diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). The study team further aims to elucidate how PROs change over time and how they may be affected by different patient, disease, and treatment characteristics.
Eligibility Criteria
Age Range: 8 years to No maximum
Conditions
Locations
Stanford University Medical Center
Palo Alto, California 94304
United States
University of Colorado Hospital
Aurora, Colorado 80045
United States
Dana-Farber Cancer Institute
Boston, Massachusetts 02215
United States
Hackensack University Medical Center
Hackensack, New Jersey 08837
United States
Memorial Sloan Kettering Cancer Center
New York, New York 10065
United States
University of Rochester Medical Center
Rochester, New York 14642
United States
St. Jude Children's Research Hospital
Memphis, Tennessee 38105
United States