A decade long insight into patient views on kidney cancer care delivery

摘要

Patient and public involvement and engagement (PPIE) is crucial to ensure that patient care and research is relevant to patient needs and is more likely to have a positive impact. Indeed, previous research priority setting initiatives in kidney cancer, which have led to tangible research programmes, have actively involved patients and their carers [1]. A continued focus on the patients and the public perspective of kidney cancer diagnosis and treatment is imperative. Kidney Cancer UK, a UK kidney cancer charity, carried out a survey of patients with kidney cancer annually over the last decade. Here, we report longitudinal survey results and reflect on the future direction of kidney cancer care and how they link to research priorities in the UK. Kidney Cancer UK delivered an annual patient survey, distributed on-line via the QuestionPro platform and via post, between 2014 and 2023. This was publicised via social media platforms (including the charity's website, Facebook, Instagram and X). Additionally, the survey was sent to clinicians and cancer nurse specialists for distribution to patients. The questionnaire focused on the patients’ experience on diagnosis, treatment and information/support received. Survey participation increased over time, with 68 completed in 2013, >300 participants from 2019 onwards and >500 participants in 2022 and 2023. A consistent survey finding was that patients feel the pathway to diagnosis for kidney cancer could be improved. Interestingly, the proportion of respondents waiting >3 months for a specialist kidney cancer diagnosis underwent a sharp rise in 2020, increasing from around 11–18% in the preceding years to 33%, with levels remaining stable since then (Fig. 1). This may be partly related to delays in diagnosis following the coronavirus pandemic, however, there was no improvement in subsequent years, perhaps reflecting growing NHS pressures. NHS data suggest an increased backlog with growing waiting times to see a specialist in secondary care and increased waiting lists for treatment [2]. Timely diagnosis remains a key area for improvement and is a target for NHS England. One in four patients reported that their GP initially misdiagnosed their symptoms as an alternative condition, and they felt that this delayed their diagnosis. This proportion has remained static over the last 4 years (Fig. 1). Indeed, kidney cancer is often asymptomatic or results in non-specific symptoms. Only 19% of survey participants reported haematuria. This is in keeping with UK data demonstrating that only 23% of patients diagnosed with renal cancer report visible haematuria, and this is more commonly associated with advanced tumour stage (49% having Stage III–IV disease) [3]. Although increased public awareness of kidney cancer symptoms has been successfully achieved through public health ‘Blood in the Pee’ Campaigns in England, this was associated with increased early-stage diagnoses for bladder but not kidney cancer [4]. Different strategies have been proposed aiming to increase early detection, including the development of risk prediction models to aid GPs to predict the risk of kidney (and bladder) cancer based on clinical signs and symptoms in primary care, to aid diagnostic patient triage. Several such models with good discrimination (area under the receiver operating curve >0.8) have been identified [5]. For example, a model by Hippisley-Cox et al. [5] included demographic and lifestyle risk factors with clinical features such as smoking, haematuria, and abdominal pain; however, further external validation is necessary prior to adoption of any models in clinical practice. Given most kidney cancer cases are diagnosed incidentally [3], the Kidney Cancer UK patient survey emphasised the need for research focusing on earlier kidney cancer detection and improved patient pathways to diagnosis. This is in keeping with results of a priority setting initiative published in 2020, which identified earlier cancer diagno