1. How to improve the bladder cancer patient experience?
- Author
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Bessa, Agustina and Van Hemelrijck, Mieke
- Abstract
Background and aims: Bladder cancer is the 10th most common cancer worldwide. Despite the high incidence and prevalence, clinical outcomes have remained static over the past 25 years. A significant contributing factor for the relative lack of improvement in bladder cancer treatment is low levels of research funding. Additionally, the patient experience is found to be worse than that for patients diagnosed with other cancer types. Therefore, this thesis aimed to define the bladder cancer research priorities and develop a wellbeing intervention to help improve the bladder cancer patient experience at Guy's and St Thomas NHS Foundation Trust. Methods: A four-stage modified Delphi method involving patients and healthcare professionals was employed to define and prioritise the unanswered research questions. To develop the wellbeing intervention, a modified Medical Research Council Framework for development of complex interventions was used. Results: Following the four-stage modified Delphi method, 41 unanswered research questions were identified and prioritised. The 10 highest scored questions (>70% of participants indicated a score of ≥7, on a scale from one to nine) for each round and within stakeholder groups were selected for a consensus meeting. 77% of these questions were concordant between patients and healthcare professionals and three research priorities emerged: prognostic and predictive biomarkers, improved diagnostic techniques for accurate staging, and surveillance following radical therapy. A pragmatic wellbeing feasibility trial was designed based on the hypothesis that a wellbeing intervention will increase patient awareness and attendance to services available to them and will better support their needs to improve health-related quality of life. Conclusion: This PhD thesis provides to the research community two strategies on how to improve the bladder cancer patient experience: 1. The identification of the research priorities for bladder cancer helps the scientific community to prioritise the most impactful research for patients and healthcare professionals; 2. The development of the wellbeing intervention provides the first building blocks for the development of a national bladder cancer wellbeing resource to help and support patients throughout their care pathway.
- Published
- 2021