A new instrument, the Living Beyond Lymphoma Questionnaire, was developed as a lymphoma-specific tool to evaluate unmet needs among patients with the disease. These findings were presented at a European Oncology Nursing Society (EONS) session at the European Society for Medical Oncology (ESMO) Congress.

Patients with lymphoma often receive long treatment courses that are associated with high rates of treatment toxicities. As this patient population often has unmet needs, a lymphoma-specific instrument for assessing patient needs is warranted.

Investigators from Trinity College Dublin developed the Living Beyond Lymphoma Questionnaire by reviewing 36 existing quality-of-life instruments and researching unmet needs in lymphoma. The content of the final instrument was validated by a panel of 8 experts.

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Approximately one-third (30%) of the identified instruments met the inclusion criteria and underwent critical appraisal. The number of items in these questionnaires ranged between 30 and 89, and they took between 10 and 24 minutes to complete.

Each item of the final Living Beyond Lymphoma Questionnaire was evaluated by the expert panel on the basis of clarity, relevance, and representativeness. The scale-level content validity index, based on the average (S-CVI/Ave) scores were 0.94 for clarity, 0.96 for relevance, and 0.94 for representativeness.

The major limitation of this study was not validating the instrument among patients.

Vanessa Boland, RGN, of Trinity College Dublin and presenter of the study, concluded, “A lymphoma-specific questionnaire of unmet needs and quality of life outcomes was developed with strong evidence supporting the survey’s content validity. We’ve currently just closed our cross-sectional survey across multiple sites in Ireland in which we’ve used this questionnaire.”

Disclosure: Some authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of disclosures.


Boland V, Drury A, Brady A. Mapping the measurement of lymphoma survivors’ unmet needs and quality of life outcomes: evidence for a lymphoma-specific questionnaire. Ann Oncol. 2022;33(suppl_7):S827-S836. doi:10.1016/annonc/annonc1046

This article originally appeared on Oncology Nurse Advisor