RESUMO
Background and objective: Radical prostatectomy (RP) is an established treatment for localised prostate cancer that can have a significant impact on urinary and sexual function, with recovery over time. Our aim was to describe functional recovery in the first year after RP, reporting descriptive outcomes alongside validated patient-reported outcome measure scores (Expanded Prostate Cancer Index Composite, EPIC-26). Methods: Men undergoing RP between September 2015 and November 2019 completed EPIC-26 at baseline and 1, 3, 6, and 12 mo. Key findings and limitations: Overall, 2030 men consented to participation, underwent RP, and completed EPIC-26. At baseline, 97% were pad-free (1928/1996; 95% confidence interval [CI] 96-97%) and 77% were leak-free and pad-free (1529/1996; 95% CI 75-78), with a median EPIC-26 incontinence domain score of 100 (interquartile range [IQR] 86-100). At 12 mo, 65% were pad-free (904/1388; 95% CI 63-68%) and 42% were leak-free and pad-free (583/1388; 95% CI 39-45%), with a median EPIC-26 score of 76 (IQR 61-100). While one in three men reported wearing a pad at 12 mo, fewer than one in ten men needed more than 1 pad/d. At baseline, 1.9% reported a "moderate or big problem" with urine leakage, which increased to 9.7% at 12 mo. At baseline, the median sexual domain score among 1880 men was 74 (IQR 43-92) and 52% had erections sufficient for intercourse without medication (975/1880; 95% CI 50-54%). Among these 975 men, 630 responded at 12 mo, of whom 17% reported sufficient erections for intercourse (105/630; 95% CI 14-20%), without medication in 6% (37/630; 95% CI 4-8%) and needing medication in 11% (68/630; 95% CI 9-13%); the median EPIC-26 domain score was 26 (IQR 13-57). Conclusions and clinical implications: Reporting of functional outcomes after RP in terms of easily understood concepts such as pad-free and leak-free status, and erections with and with medication, alongside the classical report using EPIC-26 domain scores, increases the understanding of RP recovery patterns over the first year. Patient summary: At 12 months after surgery for prostate cancer, one in ten men reported a moderate or big problem with urine leakage and one in five men reported sufficient erections.
RESUMO
Background: A stratified approach to cancer follow-up care, including remote monitoring and supported self-management for suitable patients, is increasingly recommended. Patient portals can facilitate such an approach, allowing access to results and information. There is limited understanding of the use of portals within this context. Aim: This paper reports the acceptability and usability of a patient portal developed to facilitate a remote monitoring and supported self-management follow-up care programme for men with prostate cancer. Methods: A mixed methods evaluation, including analysis of service utilisation data, a survey of users' experiences and satisfaction, and telephone interviews of non-users' views and experiences. Results: Sixty percent of eligible patients registered to use the portal. Of these, 37% logged in at least once over a 6-month period and 52% over 12 months. Satisfaction among these users was reasonably high. Use of the portal in general was rated as very easy or easy by over 70% of respondents, and the majority felt the portal had helped them manage their condition in various ways. However, a large minority (40%) did not use the portal, with reasons for non-use including lack of access to computing facilities and lack of computer skills. Those who were older were less likely to register to use the portal. Conclusions: A large proportion of participants found the patient portal acceptable and easy to use. Reasons for non-use should be addressed in order to maximise system efficiencies and minimise inequalities in care, and the needs of specific groups should be taken into account.
