gms | German Medical Science

Background: In advanced cancer care, patient involvement in decision-making is complex. The effects of treatment for advanced cancer are uncertain and often associated with minor survival benefits, but high burden for the patient. Recent advances in targeted and immunotherapy further complicate this complex decision, involving trade-offs among treatment efficacy and toxicity, survival outcomes, and quality of life. Educating patients about treatment options, while also aiding them in clarifying their values and preferences, is fundamental for shared decision-making. The web has been proposed as one of the most promising ways for education delivery including ease of access, the option to spread information widely, and to adjust information according to the needs of patients and new treatment developments.

Objective: To provide an overview of existing web-based patient decision aids for patients with advanced cancer and to evaluate their accessibility, content, feasibility, and effectiveness.

Methods: A systematic literature search encompassing various terms related to web-based educational and decision-support tools was conducted. Data were gathered from Embase, Medline, Web of Science, CINAHL, and the Cochrane Library, from inception to November 2023. Studies were eligible if the education/decision tool was web-based, designed for and tested in adult patients with cancer in a non-curative situation. Covidence software was used to manage screening. A narrative analysis of results was performed, and the SUNDAE checklist was used to rate the quality of included studies.

Results: Sixteen web-based educational and decision-support tools for patients with advanced cancer were identified. Seven focused on breast cancer patients, six targeted other specific cancer entities, and three addressed mixed populations. Seven tools were specifically developed for patients with advanced cancer, while the remaining did not specify a particular cancer stage. As a basis for the development of the tools, the predominant approach among studies involved literature reviews, focus groups, and/or existing tools, while one study was based on treatment guidelines, and one relied on historical patient data. Only three studies explicitly outlined adherence to guidelines during tool development. The tools were heterogeneous, encompassing different foci and components. User tests included controlled trials, prospective interventional cohort studies, and a retrospective observational study, involving a total of 6192 patients. Results of user tests revealed a low implementation rate and infrequent use, but high rates of satisfaction by users, increased knowledge, and improved doctor-patient relationship. Effects on involvement and self-efficacy in decision-making, participation, and distress were uncertain, with the absence of effects on quality of life, hope, anxiety, engagement in palliative care/advance directives, and survival.

Implication for research and/or (healthcare) practice: Despite new options and improved prognosis in advanced cancer treatment, only a few evidence-based web-based educational tools and decision aids are available. Addressing this gap is imperative to empower patients to make informed treatment decisions that align with their preferences and values.