THE DEVELOPMENT AND FEASIBILITY OF A NOVEL ELECTRONIC PATIENT-REPORTED OUTCOME MEASURES (EPROMS) QUESTIONNAIRE IN PATIENTS WITH PENILE CANCER

Abstract

BackgroundPenile cancer (PeCa) is a rare cancer with surgical options that affect patients’ quality-of-life. Patient-reported outcome measures (PROMs) are uncommonly utilised in this cohort despite their several patient-centred benefits and there are recommendations to further digitalise PROMs. This prospective, population-based study aimed to report the development and feasibility of a novel electronic patient-reported outcome measures (ePROMs) questionnaire for patients with PeCa. Materials and methodsA novel ePROMs questionnaire was developed and sent to patients three days before outpatient clinic appointments. The questionnaire included up to 30 items on patient symptomology and quality-of-life, including a self-reported quality-of-life score (rated 0 being worst and 100 being best). Data were collected for patients followed up between August 2021 and May 2022. The primary feasibility outcomes, adherence and engagement, were measured by response and drop-out rates. Differences in responders and non-responders were also ascertained. Secondary outcomes explored the clinical utility of the questionnaire. Responders were subcategorised into three groups: circumcision (Ci), partial penectomy (PP) or total penectomy (TP) and differences were analysed. This study was approved by the local Trust Governance Panel, including for ethical considerations. Results220 adult males were sent ePROMs questionnaires, and 141 (64%) responded initially. The mean dropout rate of subsequent questionnaires was 56%. The maximum number of questionnaires sent to and completed by a patient was eight (n=1). Non-responders were older (p<0.0001), with poorer performance status (p<0.0001) and lower body mass index (p=0.0288). TP patients reported the lowest median quality-of-life score 68.50 (8 – 99), followed by the Ci group (72.0, 37 – 94) and the PP group (76.0, 10 – 99). ConclusionsPatients initially engaged and adhered to the ePROMs questionnaire but struggled to maintain this over time. Clinical data gathered by the questionnaire may be utilised to inform patient care. The questionnaire requires additional validation, research, and education. MicroabstractThis study reports the development and feasibility of a novel electronic patient-reported outcome measures questionnaire for patients with penile cancer. 220 adult males were sent questionnaires, and 141 (64%) responded initially. The mean dropout rate of subsequent questionnaires was 56%, displaying that over time patients struggled to maintain adherence and engagement. The questionnaire requires additional validation, research, and education.