Addressing Information Overload in Women with Breast Cancer Post-Diagnosis and Pre-treatment in the Netherlands

Cancer is a complex disease marked by uncontrolled cell growth and has a widespread impact on individuals and society. Its incidence has been increasing globally, with a notable rise in cases in the Netherlands from 56,000 in 1989 to 118,000 in 2019. There will be approximately 232,000 new cancer diagnoses by 2032 (Source: iknl.nl).

Breast cancer, the most frequently diagnosed cancer among women worldwide, is a significant concern amid rising cancer rates (WHO, 2024). In the Netherlands, it is among the most prevalent cancers, with 15,634 cases reported in 2023 (NKR Viewer, n.d.). Despite significant advancements in diagnosis and treatment, cancer remains a severe and multifaceted challenge and impacts individuals, their families, and society as a whole. For individuals, the illness inflicts significant physical harm, manifesting as chronic pain, fatigue, loss of appetite, and other symptoms that drastically reduce quality of life (Okamoto et al., 2011), (Hubbard et al., 2008). The psychological and emotional toll is equally profound, with individuals and their loved ones experiencing intense fear, anxiety, and stress (Costa et al., 2016).

The experiences of individuals with cancer can be broadly categorised into four stages: Pre-diagnosis, Post-diagnosis before treatment, short-term after treatment, and long-term after treatment (Wang & Feng, 2022). While individuals face severe ongoing challenges after their illness is diagnosed, the difficulties encountered during the initial stages leading to a diagnosis often go unnoticed. The journey from experiencing initial symptoms to receiving a diagnosis is filled with uncertainty, anxiety, and confusion (Dinapoli et al., 2021) (Figure 1) as individuals navigate through this unfamiliar world with a complicated web of interactions (Figure 2). Individuals encounter a flood of information related to their condition, treatment options, supportive care resources, medical regimens, etc. making it complex. This complexity is amplified in breast cancer due to the multitude of subtypes and variants, accompanied by a wealth of information accessible online.

While healthcare providers strive to communicate information effectively through verbal and written formats for the individuals to navigate in this unfamiliar world, their time constraints and workload frequently restrict the depth of support they can offer. This results in individuals turning to gather information from diverse sources, such as online platforms, family, and friends, etc. This decentralised approach is unavoidable and offers diverse views resulting in complexity, ambiguity, and confusion and leads to “Information Overload”.

Information Overload is a complex, multi-dimensional construct and occurs when the available information surpasses one’s capacity to absorb it effectively. There are a lot of factors that cause information overload (Figure 3) amongst which emotional response is the biggest contributing factor. The effects of information overload result in the inability to effectively process, understand and utilise the information due to various reasons.

The project aims to address these challenges by supporting women with breast cancer in understanding the complexities of breast cancer diagnosis and treatment options based on their preferred level of involvement, ultimately enabling patients to make informed decisions in their care journey. To achieve this goal, the interviews are conducted with various stakeholders to identify existing gaps and employ the Metro Mapping tool to chart all actors and interdependencies within the information ecosystem. The resulting insights uncovered various sources of information, information needs, and preferred sources with the level of trust involved.

The findings from this project will benefit all stakeholders involved, including individuals with breast cancer, healthcare providers, and their companions, by equipping them with the support tools to navigate and understand the healthcare journey. Furthermore, it will alleviate the burden on healthcare providers and strengthen communication between providers and patients.

Ankita is a Design for Interaction student at the Delft University of Technology with a Bachelor’s degree in Architecture from India. She believes in the power of design education and is dedicated to enhancing personal development and well-being through the lens of design research. Her approach is rooted in empathy and stems from understanding people, and their needs and questioning the assumptions to unearth underlying challenges. Drawing inspiration from the connections and dialogues that unfold among people, she aims to uncover the unmet needs and redefine the boundaries of possibility in the realm of user experience.