A pilot programme to collect electronic patient-reported outcome measures after prostate cancer treatment using non-commercial, NHS-owned software
Kevin Gallagher1, Linda Taylor2,
Rory Brennan2, Daniel Good2,
David McDonald3, Michelle Thornton4, David Morrison5 and Alan McNeill2
1Department of Urology, NHS Lothian, Data Driven Innovation, Public Health Scotland
2Department of Urology, NHS Lothian
3Centre for Sustainable Delivery, NHS Golden Jubilee
4Scottish Government
5Scottish Cancer Registry and Intelligence Service, Public Health Scotland
Abstract
Aims: The aim was to investigate the usability and effectiveness of a non-commercial software (REDCap) for the administration of electronic patient-reported outcome measures (ePROMs) questionnaires.
Methods: The REDCap software was first piloted via a University of Edinburgh-hosted instance. Learning was used to help develop national NHS-REDCap software in collaboration with PHS/NSS-DaS.
After enrolment, patients automatically receive emails with links to ePROMs (EPIC-26 and EQ5D5L) at system-tracked, specified time points. Outcomes were the proportion of patients agreeing to ePROMs, the proportion of patients returning completed ePROMs questionnaires and patient-reported ‘ease of use’.
Results: Once the REDCap platform was available, the application was built without technical/software developer support allowing rapid iteration and system change implementation and keeping costs low.
In the University pilot system, 446/478 patients agreed to receive ePROMs questionnaires by email. 325/446 (73%) completed at least one post-operative electronic questionnaire. The main reason for non-completion was failed email delivery to some domains, this issue was addressed in development of the national system. It takes less than 60 s to enrol a patient in the system.
In the recently launched national NHS system, 34/34 (100%) of patients agreed to receive email-notified web-based questionnaires when asked. 28/34 (82%) of patients receiving emails returned questionnaires. Mean age was 66 (max 76).
On a 5-point scale of easy-hard regarding ease of use of electronic questionnaires, 21/26 (80%) reported easy, 4/26 (15%) reported somewhat easy, 1/26 (3.8%) reported neither easy nor hard and none reported somewhat hard or hard.
Conclusions: The REDCap software can successfully administer standardised, proprietary, electronic PROMs questionnaires in the NHS with high return rates and patients report ease of use. The PROMs application was built by a clinical fellow resulting in capital costs of £0.
Work is now progressing to realise impact for the improvement of patient outcomes.
The post-prostatectomy PSA follow-up conundrum: A software-light, patient-led, remote-monitored, exception-based solution
K Gallagher1, R Brennan1, J Porteus3,
A Stewart3, L Taylor1, S Jenks2, D Good1,
P Schofield3 and A McNeill1
1Department of Urology, Western General Hospital Edinburgh, Edinburgh, UK
2Department of Clinical Biochemistry, Western General Hospital Edinburgh, Edinburgh, UK
3Department of ehealth, NHS Lothian, Edinburgh, UK
Surname
Forename
Initial
Role
Affiliation
Gallagher
Kevin
M
Specialist Trainee in Urology and Clinical Fellow for Data Driven Innovation
Department of Urology, Western General Hospital Edinburgh
Brennan
Rory
Urology Administrative Assistant
Department of Urology, Western General Hospital Edinburgh
Porteous
Jennifer
Project Officer, Business Intelligence Team
Department of eHealth, NHS Lothian
Stewart
Alistair
Project Manager, eHealth
Department of eHealth, NHS Lothian
Taylor
Linda
Robotic Service Co-ordinator
Department of Urology, Western General Hospital Edinburgh
Jenks
Sara
Consultant Clinical Biochemist
Department of Clinical Biochemistry, Western General Hospital Edinburgh
Good
Daniel
W
Consultant Urological Surgeon
Department of Urology, Western General Hospital Edinburgh
Schofield
Paul
Head of Digital Innovation
Department of eHealth, NHS Lothian
McNeill
Alan
S
Professor of Urological Surgery
Department of Urology, Western General Hospital Edinburgh
Abstract
Introduction: We aimed to develop an efficient and safe secondary care-led system for post-radical prostatectomy (RP) PSA surveillance to address issues with the current primary care-based system.
Methods: The primary objective of the programme was to ensure that all patients due PSA tests had these at the correct time and that abnormal results were acted on.
Patients were eligible for inclusion if they had had RP in NHS Lothian in the last 10 years. Patients were excluded if they were deceased or moved out of the Southeast Cancer Network.
The primary outcome was the proportion of eligible patients with over-due PSA tests.
Results:
The solution
The chosen solution involves patient-initiated, community PSA testing with secondary care remote monitoring and reminders. A key feature is management by exception – the system would check that patients had their PSA tested at the appropriate time and contact if not and action abnormal results.
The solution utilised existing digital architecture (Business Intelligence Tools and the Electronic Healthcare Record (EHR)) and therefore was designed, tested, and implemented rapidly and cost-effectively.
Evaluation: OPCS4 EHR procedure coding for radical prostatectomy identified 1748/2078 (84%) patients having had a radical prostatectomy in the last 10 years.
When the first analysis was performed on those identified through the EHR, 255/1748 (15%) patients were found to have over-due PSA tests with 144, 92, and 26 being more than 1 year, 2 years and 5 years over-due respectively.
After 2 months of implementing the programme, this had fallen to 67 over-due tests (4.37%).
Conclusion: Community-led PSA monitoring may be associated with a 15% rate of PSA-check failure. It is possible to efficiently implement a secondary care managed PSA follow-up programme using “exception reporting” removing the need to individually invite and manage routine PSA testing for vast numbers of patients.
Empowering Urology Teams with the Right Decisions App
Yehia Hassan, Flora Rodger and
Matthew Rewhorn
Urology Department, Royal Alexandra Hospital
Abstract
Background: The Right Decisions platform serves as a centralized digital resource in NHS Scotland, designed to empower individuals with the ability to make informed and efficient decisions while on the move. In our initiative, we leveraged the Right Decisions platform to improve the onboarding process and decision-making capabilities of junior and mid-level urologists embarking on their urology assignments at RAH.
Situation before: Induction was a one-day orientation tour for mid-level urologists and for FY2 s a concise 15-min lecture, while the FY1 s essentially learned while doing the job.
Aims/Objectives: Offer the urology team members a comprehensive resource hub that caters to all their informational requirements in their daily tasks, aiming to simplify and enhance their work.
Methods: The Right Decisions app was integrated into the orientation provided to junior and mid-level medical professionals starting their urology positions, offering comprehensive responses to their everyday inquiries regarding the workflow and the functioning of the service to the finest details at RAH.
Utilizing the induction checklist created by the Department of Medical Education North Sector, we created an online survey to gather feedback from urology registrars who served at RAH from August 2019 to August 2023 and FY1/FY2 doctors who had urology rotations between August 2022 and August 2023 (referred to as Group A).
A similar survey containing identical questions was distributed to RAH registrars who began their positions in August 2023 and experienced the app, as well as FY1 s who started their roles in urology from August 2023 (referred to as Group B).
Results:
Group A
Group B
Introduction to staff
44%
75%
Duties in details
33%
87%
How the rota works
88%
75%
Escalation policy
44%
62%
Staff wellbeing (break areas, lockers, fob, etc)
77%
87%
Conclusion: Utilizing a mobile-app for on-demand induction enhanced the overall experience for newly appointed urology doctors.
Efficacy of Bulkamid in differing Body Mass Index (BMI): Ten Year experience at a Single Centre
C McCollum, L Cameron, S McPhee,
L Granger, H Bekarma and J.n Jones
Abstract
Introduction: Bulkamid is a minimally invasive intervention for stress (SUI) or stress-predominant mixed-urinary incontinence (S-MUI). In this study, we explore the effect of BMI on patient satisfaction after Bulkamid injection.
Methods: A single-centre retrospective study of female SUI/S-MUI patients treated with Bulkamid between 2013 and 2022 was performed. Patients were split into four BMI groups (<25, 25–29, 30–34, > 34). International Consultation on Incontinence Questionnaire (ICIQ) and 6-week consultations were analysed, measuring patient satisfaction on a 3-point scale; good benefit, partial benefit, no benefit. Secondary outcomes included re-injection, re-injection interval, and intermittent self-catheterisation (ISC) risk. Long-term ISC was defined as beyond 6 weeks.
Results: 125 patients underwent Bulkamid with a total of 228 procedures. At 6-week follow-up 49.6% of patients reported good benefit, 22.4% partial benefit and 28.0% no benefit, with an average ICIQ reduction of 7.75. Comparison between BMI groups demonstrated no difference in patient outcome (Figure 1).
Reported outcome in differing BMI groups.
74 patients required re-injection (59.2%) and this was highest in BMI 30–34 (70.3%). Mean re-injection interval across all patients was 15.5 months. This increased to 23.3 months after 2nd injection. There was no increase in long-term ISC use post-procedure, however we observed a rise in short-term requirement (10.4%) with repeated procedures. This was independent of BMI.
Conclusion: Bulkamid injection is an effective intervention for SUI/S-MUI independent of BMI. Repeated injection is often required to maintain results. Although there was no increase in long-term ISC use, risk of short-term ISC did increase with repeated procedures, and patient consent should reflect this.
Pulmonary embolism risk and thromboprophylaxis management of patients with cT3b + renal cell carcinoma: Interim analysis from the Scottish Renal Cancer Consortium
JP Blackmur, G Maresca , O El-Koubani,
F Rodger, S Nalagatla, L Drummond,
C Bradley, S Duffy, K Kanjua, S Swami,
S Leung, MZ Aslam, G Lamb, J Donaldson, R Clark, A Chapman, S Reid, G Oades
and Alexander Laird
Abstract
Introduction: Up to 10% of patients with renal cell carcinoma (RCC) have venous tumour thrombus (VTT) at diagnosis. The incidence of pulmonary embolism (PE) in this group is unknown and there is no guidance on the use of anticoagulation to prevent PE in this patient group. We aimed to determine the incidence of PE in patients with RCC and VTT, understand the pattern of anticoagulation prescription and assess the associated effect on subsequent PE.
Methods: Consecutive patients with cT3b + RCC and VTT from 8 centres between January 2012 and December 2023 were reviewed retrospectively, recording patient demographics, anticoagulation prescription, presence of PE and clinical outcomes. Proportions were compared by Fisher's exact test.
Results: In 343 patients, 203 (59.2%) were male with median age 69 y (range: 31–93 y). Surgery was performed in 131 (38.2%) patients. PE was identified in 58 (14.9%) patients (36 (10.5%) at diagnosis, 15 (4.4%) pre-operatively or within 90 days of diagnosis and 7 (2.0%) post-operatively). Excluding post-operative PE, PE was more common with more extensive VTT (10/136 (7.4%) patients with level 1 VTT and 41/207 (19.8%) patients with level 2+ VTT; p = 0.002). Of the 305 patients without PE at RCC diagnosis, 13 (4.3%) patients continued long-term treatment dose anticoagulation, 57 (18.7%) were commenced on anticoagulation and 235 (77.0%) received no anticoagulation. There were non-significant trends towards lower rates of PE but higher rates of haematuria in anticoagulated versus non-anticoagulated patients (PE n = 2 (2.9%) vs n = 13 (5.5%) respectively, p = 0.53; haematuria n = 12 (17.1%) vs n = 30 (12.8%), p = 0.43).
Conclusions: There is a significant risk of PE in patients with cT3b + RCC. This risk appears to be related to tumour thrombus level, and there was heterogeneity in the approach for prescription of anticoagulation. The interim results are underpowered to comment on potential risk-benefit of anticoagulation.
Urology Transition Services at the Royal Hospital for Children, Glasgow
K McGillivray, M Steven, R Bogle and
A Peddemul
Abstract
Background: Adolescents are usually transferred to adult services at age 16. The transition process should be as informative and easy as possible. Currently, there is no formal pathway to transfer patients to adult services. We undertook a retrospective audit to investigate the patient experience of transition from paediatric to adult urology services.
Methods: We identified patients that transitioned from paediatric to adult urology services (between 2017 and 2019 from the Royal Hospital for Children, Glasgow). We investigated whether a formal letter of notification was included. We used an electronic questionnaire (modified version of the validated CTM-15), and telephone interview to investigate patient perceptions of their transfer to adult urology services. In total 40 patients were suitable for participation, of which 19 responded to either the electronic questionnaire or interview questions. Narrative analysis was conducted of the questions answered by participants.
Results: Only 77.5% (n = 31) of patients received a formal letter of transition. More than half (n = 10) did not feel they were told in advance of when they would be transitioning. Most patients (n = 10) understood where they could get help if their condition worsened. The majority of patients (n = 12) were unaware of what to expect from adult urology services. Additionally, 67% of patients thought a virtual transition clinic would be beneficial.
Conclusions: Most patients agreed the hospital(s) took their preferences into account when transitioning. However, the majority experienced poor communication and did not feel a clear plan for their health goals was in place. A virtual clinic may help with this, and allow patients to meet the urology consultant(s) taking over their care.
