Design, development, and evaluation of a web-based information tool to support decisions on treatment options for people with advanced pancreatic cancer: A mixed-methods study.

Abstract

The current approach to evidence-based medicine advocates the incorporation of clinical evidence with patients’ preferences when providing healthcare. However, exploring patients’ preferences is complex, especially for people diagnosed with advanced pancreatic cancer (APC), because of the associated low incidence and high mortality rates of the disease compared to other cancers. APC is incurable, and patients usually receive palliative systemic anticancer treatment (SACT). Nevertheless, SACTs have benefits, risks, and uncertainties, and recipients should be provided with the facts to enable them to participate effectively in the discussions about treatment options or abstain from active treatment. Patients and healthcare professionals (HCPs) discuss treatment options through shared decision-making (SDM) which is facilitated by web-based patient decision support tools (PDSTs). However, PDSTs that support APC patients are lacking. As a result, people with APC make difficult decisions about treatment options without these tools that can potentially support them during medical consultations. Even when these PDSTs are available, they often suffer from practical adoption in healthcare. Therefore, this study aimed to explore the feasibility and acceptability of a web-based treatment information tool (WIT) for people diagnosed with APC who are considering treatment options for their situation. To achieve the aim of the study, a multi-phase mixed-methods approach was adopted, which includes (1) needs assessment using interviews and focus groups, (2) synthesis of medical evidence through systematic review and network meta- analysis of randomised controlled trials, (3) design and (4) evaluation of a WIT through a human-centred design (HCD) approach. Participants were adult patients diagnosed with APC and their relatives, clinical nurse specialists, medical oncologists, and allied healthcare personnel recruited from two National Health Service Foundation Trusts in Southwest England and the Pancreatic Cancer UK Research Involvement Network. A total of 28 participants (nine patients, four relatives, seven nurse specialists, five specialist doctors, and three members of the public) were involved in various phases of the study. Three main themes were identified from the needs assessment: facilitators and barriers to making choices, the importance of providing accessible information, and the ever-changing treatment experience. A review of the medical evidence suggests the necessity of considering multiple outcomes, such as survival, side effects and quality of life information, for APC treatment decision-making. The developed WIT demonstrated the potential to provide adequate information about the benefits, side effects and quality-of-life information of APC chemotherapy regimens for patients, relatives, and HCPs. However, the WIT’s acceptability depended on its suitability for patients as perceived by HCPs. Furthermore, the primary usability themes from the evaluation of the WIT were information sufficiency, information clarity, information relevance, user preferences, and programming defects. This study’s contribution includes an in-depth understanding of the information needs and challenges of APC treatment following a diagnosis; synthesis of the efficacy, safety, and quality-of-life information of APC chemotherapy regimens; a set of design guidelines for PDST implementation; and the application of the HCD approach among APC patients highlighting the significance and necessity of interdisciplinary research for designing PDSTs for vulnerable users. Further research is needed to assess the WIT’s effectiveness in SDM, enhance the acceptability of PDSTs among HCPs, and validate the design guidelines for widespread use.