The feasibility of patient reported outcome measures for the care of penile cancer

Abstract

When used in routine clinical practice, Patient Reported Outcomes Measures (PROMS) can give patients tacit approval to discuss embarrassing topics, which could be particularly useful for urological nursing. The aim of this study was to assess whether it would be feasible to use two such measures for penile cancer; one for body image (the Male Genital Self-Image Scale; MGSIS-5) and another for lymphedema (the Groin and Lower Limb Lymphedema questionnaire; G3L-20). Study packs were posted to penile cancer patients who had received (i) sentinel node biopsy only, (ii) inguinal node dissection only, and (iii) inguinal node dissection with post-operative radiotherapy with or without chemotherapy. The two measures (MGSIS-5 and G3L-20) were complemented with those specific to sexual function (IIEF) and cancer (EORTC-QLQ-C30 version 3) and a modified Lymphoedema Genitourinary Cancer Questionnaire (mLGUCQ). Twenty patients returned questionnaires. Validity and reliability analyses are presented but low participant numbers mean that results need treating with caution. Results show sufficient feasibility for the MGSIS-5 and the G3L-20 to warrant another study to attract larger numbers of participants, either over a longer time frame or at multiple sites. In these further studies, we would recommend adding (1) more Likert responses, (2) the timeframe to the MGIS and (3) exploring either the use of sexual desire psychometric measures or the addition of sexual desire items to the MGSIS for this patient group.