The Lymphoedema Genitourinary Cancer Questionnaire in urology follow-up clinics

Abstract

Is the Lymphoedema Genitourinary Cancer Questionnaire (LGUCQ) useful to men treated for genitourinary cancer through facilitating symptom disclosure? Lymphoedema can be debilitating and progressive and its association with bladder, prostate, testicular and penile cancer, either as a consequence of treatment or progressive disease is well recognized. However, lymphoedema is generally unrecognized during follow-up. Research on genitourinary cancer-related lymphoedema is sparse with a lack of reliable prevalence figures. A lack of empirical understanding of the experiences of these men led to the development of the LGUCQ, a simple two-sided tool to facilitate self-reporting of symptoms and difficulties associated with lymphoedema. Related pilot work suggests that written self-report tools enable men to disclose more sensitive information than they would verbally. However, the LGUCQ had not been formally evaluated in an uro-oncology department to identify the benefits from the perspective of the patients and health professionals. Thematic analysis of completed LGUCQs and interviews with patients and staff were performed. Emergent themes included the perceived barriers to symptom disclosure, the LGUCQ as facilitator and pragmatic addition, the support needs of patients and health professionals and refinements required for roll out. Issues limiting identification of lymphoedema within uro-oncology services existed. Findings suggest the inclusion of the LGUCQ within uro-oncology clinics could lead to earlier identification of lymphoedema. Patients could identify genital oedema problems with the LGUCQ increasing prompt and accurate disclosure and normalizing the experience.