A core outcome set for localised prostate cancer effectiveness trials

Objective: To develop a core outcome set (COS) applicable for effectiveness trials of all interventions for localised prostate cancer. Background: Many treatments exist for localised prostate cancer, although it is unclear which offers the optimal therapeutic ratio. This is confounded by inconsistencies in the selection, definition, measurement and reporting of outcomes in clinical trials. Subjects and methods: A list of 79 outcomes was derived from a systematic review of published localised prostate cancer effectiveness studies and semi-structured interviews with 15 prostate cancer patients. A two-stage consensus process involving 118 patients and 56 international healthcare professionals (HCPs) (cancer specialist nurses, urological surgeons and oncologists) was undertaken, consisting of a three-round Delphi survey followed by a face-to-face consensus panel meeting of 13 HCPs and 8 patients. Results: The final COS included 19 outcomes. Twelve apply to all interventions: death from prostate cancer, death from any cause, local disease recurrence, distant disease recurrence/metastases, disease progression, need for salvage therapy, overall quality of life, stress urinary incontinence, urinary function, bowel function, faecal incontinence, sexual function. Seven were intervention-specific: perioperative deaths (surgery), positive surgical margin (surgery), thromboembolic disease (surgery), bothersome or symptomatic urethral or anastomotic stricture (surgery), need for curative treatment (active surveillance), treatment failure (ablative therapy), and side effects of hormonal therapy (hormone therapy). The UK-centric participants may limit the generalisability to other countries, but trialists should reason why the COS would not be applicable. The default position should not be that a COS developed in one country will automatically not be applicable elsewhere. Conclusion: We have established a COS for trials of effectiveness in localised prostate cancer, applicable across all interventions which should be measured in all localised prostate cancer effectiveness trials

Supporting people with active and advanced disease: a rapid review of the evidence

1.1 Background: the NCSI AAD group The National Cancer Survivorship Initiative (NCSI, 2010) was set up in response to the NHS Cancer Reform Strategy (Department of Health, 2007) as a collaboration between Macmillan Cancer Support, the Department of Health and NHS Improvement, with the goal to achieve a better understanding of the experiences of cancer survivors and to advocate for the provision of services to support them. Within this broad remit, it was recognised that there was a particular group of patients whose needs were commonly neglected; people who were experiencing the ongoing effects of cancer beyond first-line treatment but who were not at end of life. The Active and Advanced Disease (AAD) working group was created to consider issues of relevance to such people. 1.2 Aims of this review This project set out to meet the following aim: To review the literature on selected cancers in order to identify implications for the development of services to support patients experiencing difficulties associated with active and advanced disease

Clinical encounter and the logic of relationality : Reconfiguring bodies and subjectivities in clinical relations

Acknowledgements I would like to thank all the patients and staff for their collaboration in the study and to acknowledge the other members of the team: James N’Dow and Sara MacLennan for their helpful guidance. I am grateful to Zoë Skea and Vikki Entwistle for the early discussions of the paper, to Natasha Mauthner and Lorna McKee for their insightful comments to various drafts, and to two anonymous reviewers for their thoughtful suggestions, which helped to clarify its argument. Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by a grant from the Big Lottery Fund. The views expressed here are the author’s and do not necessarily reflect those of the funding bodies or any other organisation.Peer reviewedPostprin

'I've used the word cancer but it's actually good news' : discursive performativity of cancer and the identity of urological cancer services

© 2015 Foundation for the Sociology of Health & Illness. Acknowledgements We are grateful to the patients and staff who took part in the study, and to two anonymous reviewers whose thoughtful comments helped refine our thinking. This research was supported by a grant from the Big Lottery Fund. The views expressed here are the authors’and do not necessarily reflect those of the funding bodies or any other organisation.Peer reviewedPostprin

Management of patients with advanced prostate cancer : the report of the Advanced Prostate Cancer Consensus Conference APCCC 2017

BACKGROUND: In advanced prostate cancer (APC), successful drug development as well as advances in imaging and molecular characterisation have resulted in multiple areas where there is lack of evidence or low level of evidence. The Advanced Prostate Cancer Consensus Conference (APCCC) 2017 addressed some of these topics. OBJECTIVE: To present the report of APCCC 2017. DESIGN, SETTING, AND PARTICIPANTS: Ten important areas of controversy in APC management were identified: high-risk localised and locally advanced prostate cancer; "oligometastatic" prostate cancer; castration-naïve and castration-resistant prostate cancer; the role of imaging in APC; osteoclast-targeted therapy; molecular characterisation of blood and tissue; genetic counselling/testing; side effects of systemic treatment(s); global access to prostate cancer drugs. A panel of 60 international prostate cancer experts developed the program and the consensus questions. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: The panel voted publicly but anonymously on 150 predefined questions, which have been developed following a modified Delphi process. RESULTS AND LIMITATIONS: Voting is based on panellist opinion, and thus is not based on a standard literature review or meta-analysis. The outcomes of the voting had varying degrees of support, as reflected in the wording of this article, as well as in the detailed voting results recorded in Supplementary data. CONCLUSIONS: The presented expert voting results can be used for support in areas of management of men with APC where there is no high-level evidence, but individualised treatment decisions should as always be based on all of the data available, including disease extent and location, prior therapies regardless of type, host factors including comorbidities, as well as patient preferences, current and emerging evidence, and logistical and economic constraints. Inclusion of men with APC in clinical trials should be strongly encouraged. Importantly, APCCC 2017 again identified important areas in need of trials specifically designed to address them. PATIENT SUMMARY: The second Advanced Prostate Cancer Consensus Conference APCCC 2017 did provide a forum for discussion and debates on current treatment options for men with advanced prostate cancer. The aim of the conference is to bring the expertise of world experts to care givers around the world who see less patients with prostate cancer. The conference concluded with a discussion and voting of the expert panel on predefined consensus questions, targeting areas of primary clinical relevance. The results of these expert opinion votes are embedded in the clinical context of current treatment of men with advanced prostate cancer and provide a practical guide to clinicians to assist in the discussions with men with prostate cancer as part of a shared and multidisciplinary decision-making process

Knowledge and attitudes of men to prostate cancer

Objective: To ascertain the current level of understanding about prostate cancer (PCa), including treatment options and potential side effects of treatment, among older men. Design and Setting: Questionnaires administered by general practitioners (GPs) in 5 general practices in the Perth metropolitan and regional areas of Western Australia. Participants: Convenience sample of men aged 40-80 years (n=503) with or without prostate cancer presenting for routine consultations. Main outcome measures: Knowledge and attitudes of men to prostate cancer Results: Eighty percent of men did not know the function of the prostate and 48% failed to identify PCa as the most common internal cancer in men. Thirty-five percent had no knowledge of the treatments for PCa and 53% had no knowledge of the side effects of treatments. Asked how they would arrive at a decision about treatment, 70% stated they would ask the GP/specialist for all their options and then decide themselves. Conclusion: This study confirms a deficit in knowledge of the disease among men in the at risk age group. Lack of knowledge encompassed areas which could delay diagnosis and hence treatment. Overall the population preferred some GP/specialist involvement in treatment decision making

The diagnostic accuracy and cost-effectiveness of magnetic resonance spectroscopy and enhanced magnetic resonance imaging techniques in aiding the localisation of prostate abnormalities for biopsy : a systematic review and economic evaluation

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Experiences, expectations and treatment decision-making in men with metastatic prostate cancer

Background: Participation in treatment decision-making (TDM) is important to patients with cancer and TDM experiences and preferences for how to make treatment decisions have been extensively studied in men with localised prostate cancer. Their preferences for how to partake in TDM are diverse and influenced by several factors. A significant proportion of men with localised prostate cancer, however, develop metastatic disease (mPC), after which the disease is considered incurable. The life-prolonging treatment possibilities at the most advanced stage of mPC, metastatic castration-resistant prostate cancer (mCRPC) have increased dramatically over the past decade, and far less is known about experiences and TDM in these advanced phases of the disease. Aim: The overall aim of the thesis was to explore experiences, expectations and treatment decision-making in men with metastatic prostate cancer. Methods: Studies I and IV were prospective, longitudinal cohort studies, study II was qualitative and study III had a qualitative, serial design. In study I, two matched groups of men with mPC (n=106) and non-mPC (n=211) were followed over 5 years with repeated questionnaires. Quality of life, symptoms and functioning were compared between the groups using independent samples Mann–Whitney U tests. The samples in studies II-IV comprised men with mCRPC who underwent life-prolonging treatment. In study II, 16 men were interviewed about their perspectives when faced with a life-prolonging treatment. Data was analysed using interpretive description. In study III, 17 men partook in serial qualitative interviews about their experiences of TDM and data was analysed with qualitative content analysis. In study IV, 114 men answered repeated questionnaires about satisfaction with TDM regarding the life-prolonging treatment and treatment experiences over the course of one year. Associations between satisfaction with TDM at baseline and treatment experiences and wellbeing at six and 12 months were explored using Spearman’s rank correlation. Results: Compared to men with localised prostate cancer, men with mPC report increasing symptoms and worsening quality of life and functioning over time once they develop metastases. TDM was twofold and contained both the desired treatment outcome and aspects of the structure of how the treatment decision was made. When men with mCRPC are faced with a life-prolonging treatment, they weigh the potential treatment benefits – prolonging life – against the possible treatment side effects and their intrusion on the men’s everyday lives. Receiving personalised information was important to the men, and the treating physician was a key party in TDM to whom the men modified their TDM role and -actions. Their satisfaction with the TDM structure was also associated with their physical and emotional wellbeing over time. Conclusion: TDM regarding life-prolonging treatment was found to be a complex, balancing act in which men with mPC face and manage a number of complex situations and have diverse experiences and preferences. Given that men with mPC report declining quality of life, symptoms and functioning and had unmet needs regarding information, continuity of care, communication and TDM, early integration of a palliative approach into the care of men with mPC could work as a way to identify and manage needs that need to be addressed