Preliminary development of a lymphedema symptom assessment scale for patients with head and neck cancer

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Abstract
Currently, no instruments are available to assess symptoms secondary to lymphedema in patients with head and neck cancer (HNC). The study aim was to develop and conduct preliminary tests of such an instrument. A preliminary item pool was generated from a literature review, previous work in breast cancer-related lymphedema, and an observational study. The item pool was revised based on an expert panel's suggestions and feedback from 18 patients with HNC. The current questionnaire, the Lymphedema Symptom Intensity and Distress Survey-Head and Neck (LSIDS-H&N), was then pilot tested in 30 patients with HNC. Preliminary testing (1) demonstrated feasibility, readability, and ease of use of the LSIDS-H&N and (2) identified that there was a considerable level of symptom burden in the cohort of patients in the piloting sample. Content validity of the LSIDS-H&N was supported by the expert panel during development of the LSIDS-H&N. Further testing is ongoing.

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