Shared Decision-making: Investigating the Potential of an Interactive, Web-Based, Information Tool for People With Advanced Pancreatic Cancer

Pancreatic cancer (PC) is a disease with very low 5-year survival rates. Some estimates set this at less than 5%. In the European Union (EU), over 85,000 deaths were projected in 2017, which is a rise of around 8.0% from 2012. PC can be broadly classified as locally resectable, borderline resectable, locally advanced, and metastatic. Treatments include surgery, chemotherapy, radiation therapy, and palliative care. Surgery offers curative treatment, but 80% of patients are diagnosed in the advanced stage (locally advanced or metastatic) and are ineligible. However, systemic therapy (such as chemotherapy) is a palliative option for people with advanced pancreatic cancer (APC). "Best supportive care" (BSC), or "supportive care", is another option which involves symptom management and improving quality of life.

Shared decision-making (SDM) is a process where clinicians and patients make decisions together using the best available evidence. SDM is recognised as a policy priority and ethical imperative by the National Health Service (NHS) and several healthcare regulators in the United Kingdom (UK), respectively. The concept of equipoise is a scenario where there is more than one legitimate choice of treatment for a medical condition. It offers an opportunity to apply SDM in discussing the choice of treatment for people with APC because there is no clear preference of treatment options in terms of benefits and risks for APC. Moreover, a systematic review in 2006 indicated, among other things, that SDM facilitated positive impact on the clinical process and patient outcomes. Encouraging SDM in APC treatment could yield similar results, including the reduction in selecting aggressive treatments that have little or no corresponding economic or personal benefits.

Several tools have been developed to enhance SDM in relation to other medical conditions. Some of these tools are for ovarian cancer, stage IV lung cancer, and colorectal cancer. CONNECT ™ is a computer-based tool that was developed for the general improvement of the doctor-patient communication process. Additionally, a systematic review in 2015 showed that decision tools can improve patients' knowledge and awareness of the treatment options available to them. However, there is very little in literature about the use of evidence-based digital tools in discussing the expected outcomes of treatment for people with APC. Although predictive tools have been developed for PC, there is currently no web-based information tool that can provide clinical evidence on the treatment choices available to people with APC.

However, there is an online decision aid developed for patients with APC in Canada. It has some useful features which can help its users make decisions about their treatment, including information about APC. However, its automation in comparing treatment options is basic, its depth of information necessary for decision-making, and its flexibility could be improved. Its target audience are the patients only. It also assumes that users typically have only 3 options to choose from, although it suggested the possibility of increasing the user options.

It is necessary that patients are fully aware of the benefits and risks associated with any treatment that is being proposed to them. Also, to ensure that clinicians provide the best available evidence-based information in an easily understandable format for the patients, the purpose of this study is to investigate the potential of an interactive, web-based information tool to facilitate the process of shared decision-making between clinicians, and patients and their relatives (or caregivers).