The Development and Feasibility of a Novel Electronic Patient-Reported Outcome Measures (Eproms) Questionnaire in patients with penile cancer.

BACKGROUND: Penile cancer (PeCa) is a rare cancer with surgical options that affect patients' quality-of-life. Patient-reported outcome measures (PROMs) are uncommonly utilized in this cohort despite their several patient-centered benefits and there are recommendations to further digitalize 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 METHODS: A novel ePROMs questionnaire was developed and sent to patients 3 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 nonresponders were also ascertained. Secondary outcomes explored the clinical utility of the questionnaire. Responders were subcategorized into 3 groups: circumcision (Ci), partial penectomy (PP) or total penectomy (TP) and differences were analyzed. This study was approved by the local Trust Governance Panel, including for ethical considerations. RESULTS: 220 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 8 (n = 1). Nonresponders were older (P < .0001), with poorer performance status (P < .0001) and lower body mass index (P = .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). CONCLUSIONS: Patients initially engaged and adhered to the ePROMs questionnaire but struggled to maintain this over time. Clinical data gathered by the questionnaire may be utilized to inform patient care. The questionnaire requires additional validation, research, and education.

Evaluation of the safety and effectiveness of prostate-specific antigen (PSA) monitoring in primary care after discharge from hospital-based follow-up following prostate cancer treatment.

OBJECTIVE: To examine follow-up procedures after men are discharged into primary care following prostate cancer and highlight any areas for service improvement. METHODS: Patient record data from two Greater Manchester boroughs were retrieved retrospectively to investigate discharge instructions and monitoring adherence. Questionnaires were sent to patients exploring their understanding of the follow-up process. RESULTS: A total of 300 records were accessed. Prostate-specific antigen (PSA) re-referral level was provided to GPs in 39% of cases. Forty- six percent of men were not tested frequently enough, and 6% had no PSA testing recorded post-discharge. A total of 222 patient questionnaires were returned. Sixty-seven percent felt GPs should be responsible for PSA monitoring, and 60% felt confident that their GP was doing so effectively. Conversely, 12% felt their PSA monitoring had been neglected. CONCLUSION: The findings highlight the complex nature of the follow-up and monitoring processes for prostate cancer patients. There is an urgent need for consensus in terms of monitoring frequency and referral pathways. Many patients do not engage in accurate monitoring post-treatment which has implications for early diagnosis of recurrence. Findings will be used to create an evidence-based, uniform Greater Manchester PSA monitoring service which is safe, acceptable and effective for all.

Exploring the experiences of patients, general practitioners and oncologists of prostate cancer follow-up: A qualitative interview study.

PURPOSE: To examine the experiences of patients and healthcare professionals of prostate cancer follow-up in primary care and to identify areas where current policy and practice could be improved. METHODS: Semi-structured interviews with patients, GPs and oncologists explored experiences of prostate cancer follow-up. Interviews were audio recorded and transcribed verbatim. Data were analysed using thematic analysis. The three participant groups were analysed as individual datasets but the same key themes were evident across the groups. RESULTS: 14 patients, 6 GPs and 5 oncologists were interviewed. Four main themes were identified: Experience of current practice; Knowledge and understanding of prostate cancer follow up; Disparity of processes and pathways; Unclear roles and responsibilities. CONCLUSIONS: Findings from this study highlight the variation in the approach to prostate specific antigen monitoring and emphasise the lack of clear policies and practices. The lack of clarity around existing follow up and monitoring processes could cause delays in the diagnosis of recurrence. There is a need for a new and improved pathway for prostate cancer follow up. The pathway should include clear and concise guidance for patients, primary care and secondary care and all relevant parties need to understand what their role is within the pathway.

Telephone first post-intervention follow-up for men who have had radical radiotherapy to the prostate: evaluation of a novel service delivery approach.

The increasing prevalence of prostate cancer places pressure on services, leading to questions about how best to configure services, so as to maintain quality and best utilise the skills of the multi-disciplinary team. There have been positive evaluations of specialist nursing roles, nurse-led service provision and telephone consultations, leading us to consider whether telephone follow-up led by a specialist nurse might be an acceptable alternative to traditional follow-up in hospital-based out-patient clinics for patients receiving radical radiotherapy for prostate cancer. Thirty-six men were included in a pilot introduction of telephone follow-up, evaluated via a questionnaire survey. The evaluation explored patients' satisfaction with practical arrangements; satisfaction with the nurse; acceptability of telephone follow-up and acceptability of this being nurse-led. Patients reported high levels of satisfaction with practical arrangements. Thirty-five patients considered the nurse to be knowledgeable and found nurse-led care acceptable. Only one patient was unhappy with telephone follow-up, whilst 27 were "very happy". Only one patient felt that telephone follow-up was poorer than traditional follow-up, whilst 27 found it "as good" and three "better". Particular advantages were reported in terms of convenience and time savings. Telephone follow-up appears to have potential for this patient group and merits wider, research-based consideration.