Background: A comparison of symptom prevalence, intensity, and distress for participants with truncal lymphedema, head and neck lymphedema, and no lymphedema identified a need for a truncal-specific, lymphedema-related symptom assessment tool and a revision of the Lymphedema Symptom Intensity and Distress Survey-Head and Neck (LSIDS-H&N). The purpose of this study was to institute the development of the Lymphedema Symptom Intensity and Distress Survey-Truncal (LSIDS-T) and revise the LSIDS-H&N. Methods and Results: A comprehensive midline measure and subsequent series of analyses were used to develop the LSIDS-T and revise the initial LSIDS-H&N. Participants included 97 without lymphedema, 82 with truncal lymphedema, and 72 with head and neck lymphedema. Cluster analysis for the LSIDS-T resulted in five clusters with a total of 21 items. Cluster analysis for the LSIDS-H&N resulted in seven clusters with a total of 31 items. Key correlations in expected directions were found with the validated measures for both surveys, and correlations with the Marlowe Crown Social Desirability Scale did not indicate issues with social desirability of response. Conclusion: The 24-item LSIDS-T and the 31-item revised LSIDS-H&N v.2 are promising additions to the suite of other LSIDS measures for use in clinical environments.
Keywords: head and neck; lymphedema; symptoms survey; truncal; validity.