长达十年的肾癌患者对肾癌护理服务看法的深入研究

IF 3.7 2区 医学 Q1 UROLOGY & NEPHROLOGY BJU International Pub Date : 2024-09-12 DOI:10.1111/bju.16530
Sabrina H. Rossi, Geraldine Fox, Malcolm Packer, Andrew Greaves, Maxine Tran, Natalie Charnley, Grenville Oades, Ekaterini Boleti, Grant D. Stewart
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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.</p>\n<p>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, &gt;300 participants from 2019 onwards and &gt;500 participants in 2022 and 2023.</p>\n<p>A consistent survey finding was that patients feel the pathway to diagnosis for kidney cancer could be improved. Interestingly, the proportion of respondents waiting &gt;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 [<span>2</span>]. 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) [<span>3</span>]. 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 [<span>4</span>]. 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 &gt;0.8) have been identified [<span>5</span>]. For example, a model by Hippisley-Cox et al. [<span>5</span>] 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 [<span>3</span>], 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 diagnosis as a key research priority [<span>1</span>].</p>\n<figure><picture>\n<source media=\"(min-width: 1650px)\" srcset=\"/cms/asset/a3a3f7b2-7cf1-4b78-a070-b347a87f745f/bju16530-fig-0001-m.jpg\"/><img alt=\"Details are in the caption following the image\" data-lg-src=\"/cms/asset/a3a3f7b2-7cf1-4b78-a070-b347a87f745f/bju16530-fig-0001-m.jpg\" loading=\"lazy\" src=\"/cms/asset/197a7576-3e3d-4309-a4ea-9341fc91c851/bju16530-fig-0001-m.png\" title=\"Details are in the caption following the image\"/></picture><figcaption>\n<div><strong>Fig. 1<span style=\"font-weight:normal\"></span></strong><div>Open in figure viewer<i aria-hidden=\"true\"></i><span>PowerPoint</span></div>\n</div>\n<div>Summary of patient survey results and main suggestions for kidney cancer research and patient care.</div>\n</figcaption>\n</figure>\n<p>The survey highlighted increased availability of certain treatment options for kidney cancer, including increased use of robotic surgery and systemic anti-cancer therapy (SACT), over the 10-year study period. 25% of patients reported receiving robotic surgery in 2023, compared to 4% in 2016. Similarly, SACT use increased from 8% in 2014, to 41% in 2018 and remained approximately static since then. However, great regional variation in access to SACT has been demonstrated across the UK, with rates of SACT in patients with metastases varying between 40% and 71% [<span>6</span>]. More equitable access to SACT is a priority highlighted by both patients and healthcare professionals alike.</p>\n<p>The survey also suggested that access to clinical trials has remained very low throughout the last decade. Whilst 5% of participants stated they were offered access to a clinical trial in 2014, this percentage remained largely static over the last decade, with 13% offered access to a clinical trial in 2023 (Fig. 1). This is a key area highlighted for improvement. Furthermore, the use of ablative therapies did not increase, with &lt;6% of patients reporting having received ablative therapy in the 10-year period (Fig. 1). These data are consistent with results from the Kidney Cancer UK Quality Performance Audit of kidney cancer services in England, in which only 3% of T1 tumours were treated with ablative therapy [<span>6</span>]. Indeed improved characterisation, diagnosis and management of small renal masses has been previously identified as a research priority [<span>1</span>].</p>\n<p>The final salient point from a decade of this survey was the need for improved communication and support for patients. In 2023, 37% of patients reported they were unhappy with the way their diagnosis was communicated. This proportion remained largely static across the last decade (Fig. 1). Similarly, 41–53% of patients felt they were not given enough information at diagnosis, and these rates also remained static over the last decade. For example, in 2023, 43% of participants reported not being given information leaflets at the time of diagnosis (Fig. 1). A general decline was noted in the proportion of patients who were given details regarding a named key worker or cancer nurse specialist from &gt;40% in 2014 to 21% in 2023. Provision of patient information leaflets, access to a named key worker and good communication are all key audit targets in kidney cancer care in the UK. Independent patient surveys also echoed poor communication in the NHS [<span>7</span>] and it is postulated this may be secondary to growing pressures on the healthcare system. A study of complaints in the NHS demonstrated that nearly half of these (48%) are related to poor communication [<span>8</span>]. These survey results are therefore crucial in highlighting the need for better communication and provision of information and support for patients with kidney cancer.</p>\n<p>In summary, these longitudinal survey data highlight the need for improvements in the early detection and diagnostic pathway for patients with kidney cancer, better patient communication and support, and more equitable access to treatment options (Fig. 1). These data are not routinely captured by audits and clinical research, highlighting the importance of PPIE. We acknowledge the survey has some limitations, namely that respondents were a self-selected group of patients and demographics (including stage at diagnosis) were unknown. Despite this, access to 10-year longitudinal data highlights trends over time, including the potential impact of the pandemic on patient care and represents a strength of this work.</p>","PeriodicalId":8985,"journal":{"name":"BJU International","volume":null,"pages":null},"PeriodicalIF":3.7000,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"A decade long insight into patient views on kidney cancer care delivery\",\"authors\":\"Sabrina H. Rossi, Geraldine Fox, Malcolm Packer, Andrew Greaves, Maxine Tran, Natalie Charnley, Grenville Oades, Ekaterini Boleti, Grant D. Stewart\",\"doi\":\"10.1111/bju.16530\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>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 [<span>1</span>]. 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.</p>\\n<p>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, &gt;300 participants from 2019 onwards and &gt;500 participants in 2022 and 2023.</p>\\n<p>A consistent survey finding was that patients feel the pathway to diagnosis for kidney cancer could be improved. Interestingly, the proportion of respondents waiting &gt;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 [<span>2</span>]. 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) [<span>3</span>]. 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 [<span>4</span>]. 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 &gt;0.8) have been identified [<span>5</span>]. For example, a model by Hippisley-Cox et al. [<span>5</span>] 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 [<span>3</span>], the Kidney Cancer UK patient survey emphasised the need for research focusing on earlier kidney cancer detection and improved patient pathways to diagnosis. 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A general decline was noted in the proportion of patients who were given details regarding a named key worker or cancer nurse specialist from &gt;40% in 2014 to 21% in 2023. Provision of patient information leaflets, access to a named key worker and good communication are all key audit targets in kidney cancer care in the UK. Independent patient surveys also echoed poor communication in the NHS [<span>7</span>] and it is postulated this may be secondary to growing pressures on the healthcare system. A study of complaints in the NHS demonstrated that nearly half of these (48%) are related to poor communication [<span>8</span>]. 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引用次数: 0

摘要

虽然有 5%的参与者表示他们在 2014 年获得了临床试验机会,但这一比例在过去十年中基本保持不变,到 2023 年只有 13% 的参与者获得了临床试验机会(图 1)。这是一个需要重点改进的关键领域。此外,消融疗法的使用也没有增加,10 年间有 6% 的患者报告接受过消融疗法(图 1)。这些数据与英国肾癌协会(Kidney Cancer UK)对英格兰肾癌服务质量绩效审计(Quality Performance Audit)的结果一致,其中只有 3% 的 T1 肿瘤接受了消融治疗[6]。事实上,改进肾脏小肿块的特征描述、诊断和管理已被确定为研究重点[1]。2023 年,37% 的患者表示他们对诊断的沟通方式不满意。这一比例在过去十年中基本保持不变(图 1)。同样,41%-53% 的患者认为他们在诊断时没有得到足够的信息,这一比例在过去十年中也保持不变。例如,在 2023 年,43% 的参与者表示在诊断时没有得到信息传单(图 1)。获得指定关键工作者或癌症专科护士详细信息的患者比例普遍下降,从 2014 年的 40% 降至 2023 年的 21%。提供患者信息传单、获得指定的关键工作者和良好的沟通都是英国肾癌护理的主要审核目标。独立的患者调查也反映出英国国家医疗服务体系(NHS)中沟通不良的问题[7],据推测,这可能是医疗系统压力日益增大的次要原因。一项关于英国国家医疗服务体系投诉的研究表明,近一半(48%)的投诉与沟通不畅有关[8]。总之,这些纵向调查数据凸显了改善肾癌患者早期检测和诊断途径、加强患者沟通和支持以及更公平地获得治疗方案的必要性(图 1)。这些数据并非审计和临床研究的常规数据,这凸显了 PPIE 的重要性。我们承认该调查存在一些局限性,即受访者是自行选择的患者群体,人口统计学特征(包括诊断时的分期)不详。尽管如此,10 年纵向数据的获取凸显了随着时间推移的趋势,包括大流行病对患者护理的潜在影响,这也是这项工作的优势所在。
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A decade long insight into patient views on kidney cancer care delivery

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 diagnosis as a key research priority [1].

Details are in the caption following the image
Fig. 1
Open in figure viewerPowerPoint
Summary of patient survey results and main suggestions for kidney cancer research and patient care.

The survey highlighted increased availability of certain treatment options for kidney cancer, including increased use of robotic surgery and systemic anti-cancer therapy (SACT), over the 10-year study period. 25% of patients reported receiving robotic surgery in 2023, compared to 4% in 2016. Similarly, SACT use increased from 8% in 2014, to 41% in 2018 and remained approximately static since then. However, great regional variation in access to SACT has been demonstrated across the UK, with rates of SACT in patients with metastases varying between 40% and 71% [6]. More equitable access to SACT is a priority highlighted by both patients and healthcare professionals alike.

The survey also suggested that access to clinical trials has remained very low throughout the last decade. Whilst 5% of participants stated they were offered access to a clinical trial in 2014, this percentage remained largely static over the last decade, with 13% offered access to a clinical trial in 2023 (Fig. 1). This is a key area highlighted for improvement. Furthermore, the use of ablative therapies did not increase, with <6% of patients reporting having received ablative therapy in the 10-year period (Fig. 1). These data are consistent with results from the Kidney Cancer UK Quality Performance Audit of kidney cancer services in England, in which only 3% of T1 tumours were treated with ablative therapy [6]. Indeed improved characterisation, diagnosis and management of small renal masses has been previously identified as a research priority [1].

The final salient point from a decade of this survey was the need for improved communication and support for patients. In 2023, 37% of patients reported they were unhappy with the way their diagnosis was communicated. This proportion remained largely static across the last decade (Fig. 1). Similarly, 41–53% of patients felt they were not given enough information at diagnosis, and these rates also remained static over the last decade. For example, in 2023, 43% of participants reported not being given information leaflets at the time of diagnosis (Fig. 1). A general decline was noted in the proportion of patients who were given details regarding a named key worker or cancer nurse specialist from >40% in 2014 to 21% in 2023. Provision of patient information leaflets, access to a named key worker and good communication are all key audit targets in kidney cancer care in the UK. Independent patient surveys also echoed poor communication in the NHS [7] and it is postulated this may be secondary to growing pressures on the healthcare system. A study of complaints in the NHS demonstrated that nearly half of these (48%) are related to poor communication [8]. These survey results are therefore crucial in highlighting the need for better communication and provision of information and support for patients with kidney cancer.

In summary, these longitudinal survey data highlight the need for improvements in the early detection and diagnostic pathway for patients with kidney cancer, better patient communication and support, and more equitable access to treatment options (Fig. 1). These data are not routinely captured by audits and clinical research, highlighting the importance of PPIE. We acknowledge the survey has some limitations, namely that respondents were a self-selected group of patients and demographics (including stage at diagnosis) were unknown. Despite this, access to 10-year longitudinal data highlights trends over time, including the potential impact of the pandemic on patient care and represents a strength of this work.

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来源期刊
BJU International
BJU International 医学-泌尿学与肾脏学
CiteScore
9.10
自引率
4.40%
发文量
262
审稿时长
1 months
期刊介绍: BJUI is one of the most highly respected medical journals in the world, with a truly international range of published papers and appeal. Every issue gives invaluable practical information in the form of original articles, reviews, comments, surgical education articles, and translational science articles in the field of urology. BJUI employs topical sections, and is in full colour, making it easier to browse or search for something specific.
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