Empowering Patients: The Role of Shared Treatment Decision-Making in Advanced Bladder Cancer—A Podcast

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00:00:14: Hello and welcome to this podcast where we will be discussing the role of shared treatment decision making in advanced bladder cancer.

00:00:22: I'm Ravi Kandiswaran, chair and senior consultant at The Division on Medical Oncology at National Cancer Centre Singapore And with me is my two esteemed colleagues Alex Felicevas and Patricia Gianatempo who'll be introducing themselves.

00:00:40: And thank you for this opportunity to spend time with all of you in the postcast.

00:00:46: I'm a medical oncologist based in Milan and my hospital is Foundazione RCCS Instituto Nazionale di Tumori, Italy My male fit of course EGU cancer.

00:00:58: Alex

00:01:00: Thank you.

00:01:01: It's a great privilege as well to join this conversation with you both today.

00:01:06: I'm executive director of the World Bladder Cancer Patient Coalition, it is an international umbrella organization uniting bladder cancer patient advocacy and support organizations And i am based in Brussels in Belgium where we also have two additional hats so to say.

00:01:22: um i'm co-chair Of The Global Cancer Coalitions Network As Well.

00:01:27: Thank you,

00:01:28: Alice and Patricia for that introduction.

00:01:33: And today I'll just give you a brief overview of what we will discuss.

00:01:38: Firstly i will introduce What is shared decision-making?

00:01:41: We will have a discussion about benefits and challenges in oncology clinical practice.

00:01:46: Then we will move on to a discussion non specific considerations for shared decision making an individualized treatment in advanced bladder cancer and finally we will have an overview of how patients and clinicians can prepare for shared decision-making discussions.

00:02:04: So Patricia, could you provide some background information on advanced bladder cancer?

00:02:10: Sure Ravi!

00:02:11: We know that bladder cancer is the nine most common cancer globally.

00:02:15: in Europe However, bladder cancer is the fifth most common cancer with more than two hundred and twenty-four thousand new cases.

00:02:25: And more then a seventeen thousand deaths estimate in twenty-twenty-two.

00:02:31: U.S.A Bladder Cancer is the sixth most common cancers With More Than Eighty Four Thousand New Cases And More Than Seventeen Thousand Deaths Estimate in twenty-twenty five.

00:02:47: So we know that patients who develop advanced bladder cancer, which refer to diseases that spread outside the bladder have a relatively poor diagnosis with five years' survival rates of less than ten percent.

00:03:04: In published literature, the term bladder cancer is something used interchangeably which refer to cancer that arise in the cells lining in your arterial tracts inside or outside of bladder.

00:03:23: During our discussion today, we will refer to bladder cancer consistently for simplicity.

00:03:31: Ravi please could you define what it is meant by shared decision making and what are its benefits?

00:03:41: Treatment decision-making is an approach to care in which patients work in partnership with their clinicians, choose between treatment options or delay of forego treatments concordant with patient values and considering the best available evidence.

00:03:56: Now this involves a collaborative conversation between the clinician's and the patient's and their carers when appropriate With the main goal creating a treatment plan tailored for that individual patient.

00:04:08: So shared decision-making is relevant in clinical scenarios, in which multiple treatment options are considered acceptable and the benefit risk ratio is uncertain equivalent or dependent on patient preferences.

00:04:22: Some of key characteristics of shared decision making include both clinician and a patient involved with that decision making process.

00:04:31: The information is shared by both the clinician and patients And consensus reaches about preferred treatments.

00:04:38: And last but not least, the clinician and patient agree on implementing that particular treatment plan.

00:04:45: Shad decision-making has become an increasingly frequent topic of discussion driven by a greater focus on patient centred care in oncology.

00:04:55: Several studies have examined the effects of shared treatment decision making on patients' satisfaction.

00:05:00: These studies cut across various cancers including breast prostate and colorectal cancer and found that patients who felt informed about treatment decisions had greater satisfaction with their medical care, and communications received—and were less likely to have decisional regret.

00:05:17: Studies in various diseases concluded that shared treatment decision-making was also associated with better psychological well being —better adherence to treatment and better quality of life

00:05:29: outcomes.".

00:05:30: Despite these potential benefits, shared decision-making is not consistently applied in oncology clinical practice according to many studies out there.

00:05:40: A recent review manuscript on the treatment of advanced bladder cancer described a simple framework for how shared decision making can be implemented based on three simple steps choice talk option talk and decision talk.

00:05:55: Choice Talk consists of informing the patient about different treatment options that are available.

00:06:01: Option Talk consists sharing information on efficacy, safety and practical considerations in addition to recommendations in current guidelines.

00:06:12: And finally, Decision Talk consist of discussions with patients' values or preferences for choosing a treatment option which aligns their goals.

00:06:22: So Alex!

00:06:23: Could you discuss challenges or barriers to shared treatment decision-making for patients diagnosed with cancer?

00:06:30: Thank You Ravi.

00:06:31: So when we talk about effective shared this treatment, decision making a critical starting point is that patients need to have the informed preferences and That means they need to understand their disease The available treatment options to them And also what matters to them personally including the values and experiences that shape those preferences.

00:06:52: However, for many patients particularly those who are newly diagnosed with cancer this is extremely challenging and most patients have no prior experience of their disease or very limited awareness about what the diagnosis actually means in practice.

00:07:08: As a result they require high level support to be able to participate meaningfully.

00:07:17: Patients are also often faced with steep learning curve.

00:07:20: They need to learn about complex treatment options, while understanding how to work collaboratively with clinicians in making those decisions that may have long-term consequences on their lives.

00:07:33: And on top of this, then the information environment itself can be difficult to navigate for patients.

00:07:40: Patients may receive too much information or too little information—we hear examples of both —or even conflicting information.

00:07:48: Many find it challenging also to interpret data about potential treatment risks and likelihoods of different treatment outcomes in those conversations when they're sourcing that information themselves.

00:08:02: Now, evidence from a systematic literature review in patients with cancer highlights several key barriers for shared decision making.

00:08:09: These include uncertainty around treatment decisions concerns about adverse effects and insufficient physician communication.

00:08:18: There are strategies that can help facilitate your decision making.

00:08:22: So these include physicians actively considering patient preferences, demonstrating positive behaviors such as relationship building and strong communication with the patient in their family And encouraging patients to use support systems beyond the clinical team so that would include family members friends and Support and advocacy groups.

00:08:42: However this is where a significant gap becomes apparent because a comprehensive global survey of patient and care experiences with bladder cancer, which was developed by the World Bladder Cancer Patient Coalition.

00:08:55: Together with an international expert's care committee we did this work.

00:08:59: We found that seventy-three percent patients with bladder cance did not receive any information about patient support groups or charities That might be available to them And most these people came from countries where these organizations exist.

00:09:13: Another important dimension I'd like to share, that links the shared decision making is the role of carers.

00:09:20: Carer involvement generally a positive influence but it can also introduce additional complexity in their relationship and in its conversations.

00:09:31: so now all about a cancer patient coalition global survey.

00:09:34: carers were found to take on wide range roles.

00:09:38: The most common included providing emotional support, searching of information running errands and providing transport.

00:09:45: Most patients with cancer want their carers to be involved in shared decision-making.

00:09:50: In one survey we saw that this survey included both patients and carers.

00:09:55: Ninety three percent agreed that both groups should be informed about the treatment decision process.

00:10:01: And then, eighty-nine percent agreed that treatment decisions should be made collaboratively between patients their families and clinicians.

00:10:10: A systematic review focused on breast and prostate cancer.

00:10:15: so that's another example where it was found at almost all.

00:10:18: patients preferred an active and collaborative role with carers in treatment decision making.

00:10:24: Carers, on the other hand often preferred either to collaborate with patients or allow patients make decisions independently.

00:10:33: And at same time disagreements can arise.

00:10:35: so I think patients and carers may have different perceptions of symptoms for medical needs.

00:10:41: This means clinicians need to navigate complex dynamics carefully themselves ensuring that patient's wishes remain central while still recognizing input from carers & family members.

00:10:54: Patricia, my question to you.

00:10:56: Could you provide additional insights about challenges

00:11:04: than patients that knows it with advanced blood cancer who may need to start treatment more urgently.

00:11:30: In general, shared decisions about cancer treatments are challenging when multiple therapies are available and have different benefits or risks.

00:11:42: In Advanced Blood Cancer several tryptome options are now available including chemotherapy immunotherapy targeted therapy as well which all have different benefits and risks, in addition to a very amount of real-world evidence and physician experience.

00:12:03: This complexity can make it difficult for patients who evaluate their options.

00:12:10: In an interview based study patient with advanced bladder cancer and their careers often state that they relied on physicians or decision making but felt that alternative treatment were not discussed.

00:12:27: In the World Blood Cancer Patient Collegiation Global Survey, discussed earlier by Alex, eighty-two percent of patients state they needed additional information throughout their treatment and care including information about treatment options about side effects, treatment of treatments and the diagnosis.

00:12:53: Another study reports potential discardance in perception between patients with bladder cancer and health care providers about shared decision-making.

00:13:04: Sixty five percent of healthcare providers felt that patient being too overwhelmed to make decisions was a barrier for sharing decision making compared with only nine percent of patients, suggesting that patients may be more open to make a decision than health care providers perceive.

00:13:26: Sever study in an advanced bladder cancer have highlighted the psychological and emotional impact on the disease which might make it more difficult for patient to engage.

00:13:41: First of all, a study of social media posting by patients or careers conducted in five European countries highlight the impacts on quality life including physical and psychological aspects.

00:13:56: In addition to impact daily activity, social life and financial aspect.

00:14:08: have similar findings.

00:14:13: The main issues for patients were managing symptoms and adverse events, dealing with psychological impacts such as feeling of loneliness depression discouragement anxiety stress fear or personal change.

00:14:32: Moreover, the World Bladder Cancer Patient Collelization Global Survey also identified emotional impact of disease on specific aspects in patient life including sexual activity stress anxiety levels hope for future ability to sleep and financial aspect.

00:14:55: Overall these studies highlight that shared decision making patients with advanced bladder cancer has specific challenges.

00:15:05: Ravi, which factors may be relevant to treatment decisions for individual patients with advanced body cancer?

00:15:15: As you know Patricia a treatment landscape for advanced bladder cancer has evolved in recent years and is much more complex now – with several treatment options now approved.

00:15:28: The availability of different treatment options enables personalized treatment strategies, increasing the importance of shared treatment decisions.

00:15:36: Now several factors can be considered when making a treatment plan for patients with advanced bladder cancer.

00:15:43: These include attributes of different treatments such as toxicity profile efficacy effects on quality-of life treatment regimen burden meaning number and frequency infusions.

00:15:58: Patient characteristics should also be considered, which includes several aspects.

00:16:02: Firstly patient priorities or preferences Which could be to maximize disease reduction or survival Or minimize toxicity and maintain quality of life.

00:16:15: Secondly patient health status or medical needs Which actually refers to co-morbidities fitness or frailty and eligibility or ineligibility for different treatment options.

00:16:27: Finally, social and lifestyle factors.

00:16:30: For example availability of carer support or urban or rural location.

00:16:37: Disease characteristics may also be relevant such as sites of metastasis, extent of tumour burden, tumour histology and prior treatment received in earlier disease stages.

00:16:49: Decisions can also affected by access to economic considerations and health care or personal costs.

00:17:01: Because of the differences between individual patients with advanced bladder cancer, a one-size fits all approach to treatment is unlikely to be appropriate.

00:17:12: thus patient's carers & clinicians should discuss benefits and risks for all treatment options to enable informed shared decision making.

00:17:22: Treatment guidelines also encourage participation in clinical trials.

00:17:28: Thus, these conversations should also highlight clinical trials as a potential treatment approach.

00:17:34: However the World Bladder Cancer Patient Coalition survey found that eighty-four percent of patients with bladder cancer did not receive any information about participation in clinical trials.

00:17:48: So Alex what do you think are the treatment goals for patients with advanced bladder cancer and Do differences exist between patient and clinician goals?

00:17:58: In Kirabi, so there are several studies which have explored treatment goals among patients with advanced bladder cancer and their carers.

00:18:08: And in literature review examining multiple studies concluded that patients and carers often prioritize treatment efficacy over tolerability when making choices.

00:18:19: However, symptoms and side effects quality of life.

00:18:22: And the number of medicines required were also important considerations when making treatment decisions.

00:18:29: another online preference survey among patients with advanced bladder cancer showed that The main treatment goal for fifty seven percent of patients was to extend their survival.

00:18:41: For the remaining forty three percent a priority was maximizing quality-of-life And in the same survey, patients were also asked to rank specific treatment attributes.

00:18:55: The factor with a greatest influence on preferences was the chance of responding to treatment.

00:19:01: other attributes that significantly influenced decisions included cancer-related pain ,the risk of peripheral neuropathy and severe side effects.

00:19:16: Now, interestingly patients were willing to accept a lower chance of treatment response if it meant reducing pain or lowering the risk side effects.

00:19:27: In an interview-based study in patients with advanced bladder cancer also found that balancing quality life with treatment outcomes was common feature for patient decision making process.

00:19:40: when we look more broadly at genital urinary cancers including bladder Studies consistently show that discord can exist between patient goals and clinicians' goals for the treatment.

00:19:54: In one study comparing treatment attribute preferences between oncologist and patients with bladder cancer, most oncologists prioritized improvements in overall survival.

00:20:06: In contrast, most patients prioritize the treatment experience itself including fewer grade three or four adverse events and fewer medications of treatments that are required.

00:20:19: So when taken together these findings highlight why it is essential to understand individual patient goals.

00:20:30: This requires detailed open discussions to identify treatment options that best align with patient preferences and including their views on outcomes, side effects & the quality of life in these discussions.

00:20:45: Some examples questions can support this conversation include asking patients what are your main concerns regarding diagnosis which aspects of treatment is more important to you, living longer or having fewer side effects.

00:21:01: What activities that bring you joy?

00:21:04: That you would like to continue during and after the treatment?

00:21:09: And every patient is unique.

00:21:11: we know that!

00:21:12: Allowing for an open trusting conversation will then allow a physician better understand and respect individual patients needs & expectations.

00:21:23: So my next question is to you, Patricia.

00:21:28: What tools can be used to support shared decision-making between clinicians and patients?

00:21:35: Thank You Alexa!

00:21:37: I think shared decision making can be supported by patient decisions and conversation aids which can develop in different formats including the booklets websites and apps.

00:21:51: These aids aim to support informed decision-making by improving patient knowledge, encouraging a patient involvement in decisions and preparing patients to participate in conversations with clinicians.

00:22:07: A typical patient decision aid contains information about the disease and available treatment options including risks benefits and uncertainties, and a clarification exercise in which patients are asked to make choices based on trade-offs between treatment options.

00:22:29: Patient decision aids are helpful fully in disease areas with multiple treatments optioned for different outcomes or adverse events that can help the patient identify and reflect their personal preferences.

00:22:44: In addition, Conversation Aids is a specific design to encourage and directly support conversation between patients' and clinicians when making decisions together with the aim of improving quality in their shared decision-making process.

00:23:03: A systemic review across various medical conditions concludes that Patient Decision Aids improves patient knowledge decreased decision conflicts relate to the feeling of an informant, and decreasing decisions about person preference.

00:23:22: Decision aids also appear have a positive effect on patient clinic's communications and no significant difference in the length of consultation was found when patient decision aim were used In study of patients with viral cancers in Germany.

00:23:43: Decision aids increase patient satisfaction with the informer provided.

00:23:48: However, only thirty percent of patients report receiving any decision aid.

00:23:55: In this study elements most requested by patients for decision aids were pros and cons of treatment options And a list of questions to ask clinicians For advanced bladder cancers.

00:24:11: resources and tools to facilitate shared decision-making between patients, careers and clinicians can be found at the World Blood Cancer Patient Coalition and Blood Cancer Advocacy Network website.

00:24:29: Alex!

00:24:30: How can patients prepare for shared treatment decisions making discussions?

00:24:37: Thank you Patrizia and thank you sharing some of those tools that you have mentioned, it is possible to improve and empower meaningful shared decision-making conversations.

00:24:49: So how can patients prepare for shared treatment decisions making discussions?

00:24:54: I think patients can prepare these discussions by using Decision Aids and information provided by a healthcare professional.

00:25:01: And Patricio you touched on this.

00:25:04: These tools patients clarify their treatment priorities, understand upcoming decisions.

00:25:11: Some of these are very big decisions to make increasing the knowledge of treatment options and reflecting on questions that they want to ask one in during their appointments with a physician.

00:25:23: it is important however for patients to understand that shared decision making is step-by-step process so information needs.

00:25:33: For example, it can be difficult to understand different treatment options fully before the specific details let's say on a cancer diagnosis have been clarified.

00:25:45: Some decision aids are designed to be used immediately before consultations so these help patients identify their questions in advance and concerns in advanced and may involve discussions with carers or family members prior.

00:26:00: This approach can actually make consultations more efficient whilst also allowing discussions to begin at a more effective level.

00:26:08: Question prompt lists are one example as well, these have been shown to increase the number of questions patients ask without increasing their length of consultation.

00:26:19: Other decision aids are intended for use during oncology or urology clinic visits so this tools help provide information and support conversations about patient values particularly in relation to the risks and benefits of different treatment options that are being discussed.

00:26:37: And finally, participation on support groups can also be really valuable... ...and we hear a lot from our patient communities.

00:26:44: through peer-to-peer conversations patients can gain insight into real life impact of treatment for others with lived experiences about advanced bladder cancer similar life aspirations or hobbies but put the treatment decisions and treatment impact in the context of real life for that patient.

00:27:07: So overall better preparation can help patients feel more empowered, make consultations more efficient than focused on individual patient situation concerns which is central to their patient-centered care.

00:27:20: Bladder cancer patient groups can be a great resource providing decision aids, conversation tools and peer support in addition to support available in the clinical setting.

00:27:31: And The World Bladder Cancer Patient Coalition is an excellent reference resource clinicians should utilize to guide bladder cancer patients and carries two resources on support that are available for them in their country or regionally even internationally through our global network like ours.

00:27:49: And Ravi, the final question to you.

00:27:52: To conclude what do you consider to be the main take home points from this discussion today?

00:27:59: Thank You Alex!

00:28:00: As you are aware and mentioned to Patricia earlier as well The treatment landscape for advanced bladder cancer has evolved in recent years and several treatment options are now available which have different benefits and potential adverse events.

00:28:14: Highlighting the need to tailor these treatments tooled the individual patient With the increasing focus on patient-centered care in advanced bladder cancer, shared treatment decision making can help with creating individualized treatment plans that align with a patients' needs and goals.

00:28:31: Patients who feel informed in treatment decisions are more likely to be satisfied with their medical care and communications received and less likely have decisional regret.

00:28:42: Shared Decision Making also associated better quality of life outcomes.

00:28:48: However, there are several challenges of barriers to shared treatment decision-making in advanced bladder cancer.

00:28:53: This includes the lack of knowledge and steep learning curve in patients who are newly diagnosed In addition to potential conflict and perceptions of treatment goals between patients, carers & clinicians.

00:29:08: Thus, clinicians should encourage in depth and tailored discussions with patients To identify their treatment options that best aligns with preferences.

00:29:17: This can be supported by decision aids to help patients prepare for shared treatment, decision-making discussions and define their priorities for treatment.

00:29:27: The World Bladder Cancer Patient Coalition and bladder cancer advocacy network websites provide valuable resources for patients with bladder cancer, their carers and healthcare professionals.

00:29:42: With that I would like thank you Alex and Patricia for that wonderful, informative discussions.

00:29:49: Thank you!

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