Measuring quality of life in patients with nodular lymphocyte-predominant Hodgkin lymphoma

A Pilot Study of Prospective Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)

This study is trying to understand how nodular lymphocyte-predominant Hodgkin lymphoma affects the quality of life for both kids and adults by collecting their feedback on symptoms and treatment experiences over time.

Quick facts

• Study type: Observational
• Enrollment: 100 (estimated)
• Ages: 8 Years and up
• Sex: All
• Sponsor: St. Jude Children's Research Hospital (Academic / other)
• Locations: 7 sites (Palo Alto, California and 6 other locations)
• Trial ID: NCT06098430 on ClinicalTrials.gov

What this trial studies

This study focuses on collecting and analyzing patient-reported outcomes (PROs) from both adult and pediatric patients diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). It aims to establish a data collection infrastructure for longitudinally tracking symptoms and treatment tolerability using validated PRO instruments. By examining how these outcomes change over time and are influenced by various patient and disease characteristics, the study seeks to enhance understanding of the patient experience in NLPHL. The findings could inform future treatment strategies and improve patient care.

Who should consider this trial

Good fit: Ideal candidates include individuals aged 8 years and older with a confirmed diagnosis of NLPHL who can provide consent and complete electronic surveys.

Not a fit: Patients younger than 8 years or those with concurrent diagnoses of other lymphomas may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved management of symptoms and better quality of life for patients with NLPHL.

How similar studies have performed: Other studies have successfully utilized patient-reported outcomes to improve understanding of treatment impacts, suggesting this approach is promising.

Eligibility criteria

Inclusion Criteria

* Age ≥ 8 years
* Patient or their adult proxy must have verbal and written English language proficiency.
* Pathologically confirmed diagnosis of nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL); patients with evidence of transformed lymphoma at diagnosis or subsequent development of transformed lymphoma after diagnosis are eligible.
* Patients or their adult proxy must be able to provide consent.
* Patients and/or adult proxy must be able to complete electronic quality of life surveys

Exclusion Criteria

* Age 7 years or less.
* Patient or adult proxy does not have verbal and written English language proficiency.
* Patients with histologic evidence of a composite lymphoma (NLPHL with a concurrent diagnosis of Hodgkin lymphoma, indolent non-Hodgkin lymphoma, or gray zone lymphoma) at diagnosis are not eligible.
* Inability or unwillingness of research participant or legal guardian/representative to give consent.

Where this trial is running

Palo Alto, California and 6 other locations

• Stanford University Medical Center — Palo Alto, California, United States (Recruiting)
• University of Colorado Hospital — Aurora, Colorado, United States (Recruiting)
• Dana-Farber Cancer Institute — Boston, Massachusetts, United States (Recruiting)
• Hackensack University Medical Center — Hackensack, New Jersey, United States (Recruiting)
• Memorial Sloan Kettering Cancer Center — New York, New York, United States (Recruiting)
• The University of Rochester Medical Center — Rochester, New York, United States (Recruiting)
• St. Jude Children's Research Hospital — Memphis, Tennessee, United States (Recruiting)

Study contacts

• Principal investigator: Valerie Crabtree, PhD — St. Jude Children's Research Hospital
• Study coordinator: Valerie Crabtree, PhD

Conditions Nodular Lymphocyte-Predominant Hodgkin Lymphoma