Accurately Capturing Experiences of Patients With NHL

A new study has validated the content of an instrument used to assess the symptoms, adverse effects, and emotional concerns of patients with indolent B-cell non-Hodgkin lymphoma (NHL).

The report assessed the validity of the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Lymphoma Symptom Index-18 (NFlymSI-18) and found it accurately captured the most common symptoms reported by patients. The analysis was published in the Journal of Patient-Reported Outcomes.¹

About 4 in 10 cases of lymphoma in the US are indolent NHLs (iNHL), noted the study authors. Patients with indolent lymphoma can experience a variety of symptoms, or no symptoms at all, the authors said. Moreover, individual patients can experience shifts in symptoms over time.

In this analysis, of the 18 patients who participated, 67% had follicular lymphoma and 28% had marginal zone lymphoma | Image Credit: ChasingMagic/peopleimages.com-stock.adobe.com

In iNHL, common symptoms include swelling of the lymph nodes, malaise, fatigue, and decreased appetite, among others. In addition, patients with B-cell lymphoma often experience the classic “B symptoms” of night sweats, persistent fever, and unintentional weight loss, they noted.

Given the range of experiences of people with iNHL, the study investigators said it is important to be able to efficiently capture clinically relevant, holistic, patient-reported outcomes.

“This information is essential for improving patient-centered treatment decision-making, ensuring that treatments align with patient needs and ultimately advancing the field of iNHL therapy,” they wrote.

In fact, a study published last year suggested that many survivors of NHL continue to experience physical and psycho-social impacts from the disease even after therapy.²

David Cella, PhD, senior author of the present study, helped to develop a series of disease-specific symptom indexes designed to track end points in oncology clinical trials. One of those was the NFlymSI-18, an instrument that uses 18 items divided into 4 subscales.

The assessment was based on input from oncologists and patients, and it has already been used in clinical trials. But the investigators said its validity with regard to B-cell iNHL specifically has not yet been determined. The new report was designed to validate the instrument, with a particular focus on the “disease-related symptoms—physical” (DRS-P) subscale.

The investigators approached patients with a confirmed iNHL diagnosis who had received at least 1 line of therapy. Participants were given semistructured interviews and asked to provide detailed descriptions of their symptoms, adverse effects, and emotional concerns. That information was then compared with patients’ treatment timelines to better understand which effects were related to treatment and which were related to the disease itself. Participants were then given a cognitive interview that included the NFlymSI-18 questionnaire, followed by an item-by-item debriefing in which patients were asked to elaborate on their answers and assess the clarity and relevance of each item.

A total of 22 patients were invited to participate in the study, and 18 of those agreed and completed the first interview. Seventeen patients completed the NFlymSI-18 assessment, and 15 completed the cognitive debriefing. Most of those who participated (67%) had follicular lymphoma, 28% had marginal zone lymphoma, and 1 patient had lymphoplasmacytoid lymphoma/Waldenström macroglobulinemia, the authors said. The patients had a mean age of 67 years.

Most participants said they had swelling (14) and fatigue (11), and 8 reported pain. Loss of appetite, anxiety, rash, sleep disruption, trouble breathing, and malaise also were reported.

When the investigators mapped the content of the NFlymSI-18 to the concerns expressed by patients, they found that the most frequently mentioned symptoms, including the physical symptoms reflected in the DRS-P subscale, were all included in the assessment.

“The cognitive interview results also revealed good item clarity and respondent understanding for the DRS-P,” the authors said. “For every item, at least 14 of the 15 participants (93.3%) said the meaning of the items was clear.”

Overall, the authors said the DRS-P subscale showed “excellent” content validity for patient-reported symptoms. They said it should be considered a valid tool for understanding iNHL, including its symptoms and progression, and the impact of treatment on patients.

References

1. Hurt CN, Kaiser K, Shaunfield S, et al. Content validation of the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Lymphoma Symptom Index-18 (NFLymSI-18) in indolent B-cell non-Hodgkin's lymphoma. J Patient Rep Outcomes. 2024;8(1):68. doi:10.1186/s41687-024-00752-6

2. Amatya B, Dickinson M, Khan F. Factors associated with long-term functional and psychosocial outcomes in patients with non-Hodgkin lymphoma. J Rehabil Med. 2023;55:jrm004816. Published 2023 Feb 28. doi:10.2340/jrm.v55.4816