Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)
- Conditions
- Nodular Lymphocyte-Predominant Hodgkin Lymphoma
- Registration Number
- NCT06098430
- Lead Sponsor
- St. Jude Children's Research Hospital
- Brief 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.
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 100
Not provided
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Estimates of response rates At baseline, 3, 6, 9, and 12 months Percentage of survey completion at different timepoints
Patterns of individual per-patient survey completion At baseline, 3, 6, 9, and 12 months Patterns of individual per-patient survey completion will be described. Non-responders, late responders, and patients with suboptimal item completion rates who require real-time outreach will be queried for individual challenges in completing PRO surveys for iterative improvements to infrastructure.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (3)
University of Colorado Hospital
🇺🇸Aurora, Colorado, United States
Memorial Sloan Kettering Cancer Center
🇺🇸New York, New York, United States
St. Jude Children's Research Hospital
🇺🇸Memphis, Tennessee, United States