Shining a spotlight on the patient and carer experience at the UK Oncology Forum 2023
by Pamela McGowan
Fight Bladder Cancer's Chief Executive Officer Lydia Makaroff positioned the global patient perspective at the forefront of discussion during the UK's recent Oncology Forum in June
Patient-centred management of bladder cancer was the focus of this year's UK Oncology Forum #OF23 bladder cancer breakout sessions and formed the basis of a range of outstanding and engaging presentations, shared amongst an equally engaged audience. Alongside fellow experts and stakeholders directly responsible for bladder cancer management and service delivery, research into personalised treatment, the impact of gender on patient outcomes and treatment intensity were all explored. Fight Bladder Cancer's Chief Executive Lydia Makaroff continued the patient focussed conversation by sharing groundbreaking patient and carer insights from the recently published multi-national study Patient and Carer Experiences with Bladder Cancer: Results from a Global Survey in 45 Countries, Makaroff et al., 2023 (1).
The UK Oncology Forum, with its collective panel and audience of experts within the field, provided the perfect platform upon which to share the hard-hitting, real-world, patient and carer experience data, published and subsequently summarised by the World Bladder Cancer Patient Coalition in May 2023 (2). The revealing insights are considered an important milestone for the bladder cancer community, with study findings - patient-reported outcomes, having the potential to inform and enable service review at the highest level (a key priority within Fight Bladder Cancer's Exemplar Report (4)).
"Publishing this report is an exciting milestone for us. This multi-year, multi-national research project was done with national bladder cancer patient organisations worldwide. This is a global survey of bladder cancer patients, and not only did it seek to hear from patients, but it is also, to our knowledge, the first survey to seek input from carers about their experiences supporting a loved one with bladder cancer".
Lydia Makaroff
Data from nearly 1,200 patients, surveyed over multiple years, have assisted in the identification of areas of unmet need, some of which came as a surprise to experts and stakeholders alike, yet substantiate Fight Bladder Cancer's mission and pillars; awareness, support, policy change and research (5).
The peer-reviewed publication
The executive summary
The full report
Bladder cancer awareness and timely diagnosis
Amongst the vast array of study outcomes, it was found that despite continued, extensive efforts to raise awareness of bladder cancer, a lack of awareness remains, with more than half of the patients within the analysis (54%) unaware of the signs and symptoms of bladder cancer before their diagnosis. Of further concern was that more than half of all respondents (57%) were diagnosed with another condition before being diagnosed with bladder cancer, potentially leading to less favourable outcomes (age and gender cited as leading factors in diagnosis delay) (1).
Support and information needs of bladder cancer patients and their carers
In addition to the clear necessity for improved awareness and diagnosis, perhaps the most staggering data reflected yet another area of need, with almost all respondents (82%) seeking more help and support across many diverse areas, including treatment options, complementary care, as well as financial support. The study, the first of its kind, also clearly demonstrated that consideration must be placed, not only upon the needs of each patient, but the needs of those supporting them too, as evidenced by the majority of carers (91% of those surveyed) having been emotionally impacted whilst caring for someone with bladder cancer (1).
The compelling outcomes extended well beyond awareness, diagnosis and support, and combined with a wealth of knowledge accumulated through previous research, have led to the development of ten priority focus areas (summarised below). Fight Bladder Cancer, as a member of the World Bladder Cancer Patient Coalition, is actively calling on all stakeholders to review these focus areas and ensure that funding of projects, initiatives and future work are aligned accordingly (2).
By addressing and improving provision within these 'call to action' focus areas, the patient and carer experience will improve as a direct result.
Access to 'best care' for bladder cancer patients is a global priority, and thanks to this groundbreaking study, the patient and carer perspective provides a clearer view of the high-quality bladder cancer care expectations that stakeholders should consistently strive to deliver. On behalf of the bladder cancer community, Fight Bladder Cancer will continue to share compelling messages and 'call to action' focus areas derived from this study with the relevant bodies; tirelessly campaigning to ensure that 'best care' becomes the nationwide 'standard of care' for all bladder cancer patients and their families.
Join us in Birmingham on Thursday 7 September at our Exemplar Policy Workshop to learn more about how Fight Bladder Cancer is working to improve the bladder cancer pathway.
References:
(1) Patient and Carer Experiences with Bladder Cancer: Results from a Global Survey in 45 Countries, Makaroff et al., 2023
(2) https://worldbladdercancer.org/wp-content/uploads/2023/06/WBCPC-Patient-...
(3) https://worldbladdercancer.org/wp-content/uploads/2023/06/WBCPC-Patient-...
(4) https://www.fightbladdercancer.co.uk/sites/default/files/downloads/20210...
(5) https://www.fightbladdercancer.co.uk/about-us/vision-mission-and-impact