Worldwide 338,000 people are diagnosed with pancreatic cancer each year, and it is predicted to become the second most common cause of cancer-related death in 2030 [1]. The disease has a very poor prognosis; approximately six out of 100 patients survive 5 years after diagnosis [2]. Early detection of pancreatic cancer is challenging because patients are often asymptomatic or experience non-specific symptoms until late stage disease. When a pancreatic mass is detected using clinical imaging modalities such as ultrasound and/or CT scan, it is generally unclear whether a malignancy is causing the mass. Usually, biopsies via endoscopic ultrasound are needed, or surgery is performed while the diagnosis is still unclear. At primary diagnosis, up to 85% of patients present with advanced unresectable disease, due to locoregional spread and metastases. For these patients, only palliative treatment can be offered. For 15% of patients surgery is possible at diagnosis, which is the only therapy that may be curative [3, 4]. However, even after surgery survival rates are low, and almost all patients die from their disease within 7 years [4].

Since so little can be done to help pancreatic cancer patients in terms of cure and the diagnostic process is often long and uncertain, it becomes increasingly important to seek other ways of helping patients to cope with their (suspected) disease. One of these ways is to tailor information provision, which is of particular importance in the period after diagnosis [5]. At that time, patients learn more about the disease and their prognosis, and treatment decisions are made. Evidence suggests that adequate information can improve cancer patients’ well- being [6], give patients a feeling of control [7], and help patients to cope with their disease [8, 9]. Information can also reduce anxiety and depression [10], improve treatment compliance, create more realistic expectations about the treatment, promote self-care and participation in one’s care, and generate feelings of safety and security [7]. However, research has shown that the information that cancer care professionals provide to cancer patients often does not match the patients’ information needs [11]. Obviously, providing the adequate amount or type of information is challenging. Some patients desire a lot of information, while others feel overwhelmed by the amount of information they receive [6]. Also, cancer patients differ in the type of information they want to hear [6, 8, 12]. We performed a multicentre survey aimed at identifying what questions are most important for pancreatic cancer patients to be answered in the first period after diagnosis.

This study aimed to identify how important patients consider an extensive set of disease- and treatment-related questions in the first period after their (likely) diagnosis of pancreatic cancer. If we look at the number of questions, on average the patients considered a large number to be important or very important to be addressed in the first period after diagnosis. Per participant this number ranged from 25 to 99% of the questions offered for consideration. This finding is in line with other studies showing that individual patients can greatly differ in the amount of information they consider relevant and/or want to receive [6, 8, 12]. The amount of information desired could not be predicted based on patients’ socio-demographic characteristics.

If we look at how important the 84 questions that we offered were considered to be, the results showed that overall, patients considered it important that about half of the questions were addressed. Of all questions, patients considered it most important that questions were addressed about the diagnosis, likelihood of cure, treatment options, harms and procedures, prognosis if the disease is not treated, and quality of life (pain, fatigue, diet). Addressing this need should help patients to gain a better understanding of their situation. Having a good understanding of one’s disease, prospects, and possible (medical) interventions is the best place to start when decisions about one’s care need to be made and is expected to support coping with illness. However, addressing all these topics may cause patients to feel overwhelmed by the amount of information they need to process. In order to make it easier for patients to process, retain and review the information they would like to receive, doctors may wish to write down key information during the consultation and give it to the patient as a memory aid. Notably, questions may not need to be answered in a single consultation nor necessarily during a consultation. That is, doctors may spread the information over more than one consultation and/or defer provision of information to other sources, such as other healthcare providers or paper-based or electronic information sources. In this manner, the consultation can be dedicated to the issues that patients and their healthcare providers consider most critical at that particular moment in time, and that require a conversation in person.

Most of the questions considered as important to address were marked by some patients as better to avoid or as not being applicable. These patients may have considered the question to be confronting or irrelevant (e.g., questions about the diagnosis in case the diagnosis is certain) or untimely (e.g., questions about end-of-life issues) at that stage of the illness trajectory. The number of questions that patients considered better to avoid was small, and many did not wish to avoid any question, suggesting that patients generally do not wish to evade confronting topics, even in the context of a cancer diagnosis with such a poor prognosis. Healthcare professionals should not avoid introducing difficult topics, should ask patients about what they want to know, be honest, and try to be responsive to patients’ verbal and nonverbal cues. There were comparatively more patients that considered questions to be not applicable than better to avoid, part of which were also the questions considered as least important on average. For the questions relating to diagnosing the disease, this may be explained by the patients having already received a certain diagnosis. Further, it was notable that the questions considered as not applicable often related to the option of having no treatment or to postponing treatment, options that may not have occurred to some as viable or desirable options.

There are some limitations to this study. We asked participants to think back to the first weeks after diagnosis. There was large variability in number of days between receiving the diagnosis and completing the survey. Eight participants filled out the survey within 10 days of diagnosis. These patients had less opportunity to gain insight in what questions were most important to them in the first period after diagnosis. Three participants on the other hand completed the survey more than 6 months after diagnosis. This could have affected their importance ratings, although research has shown that people can vividly remember negative emotional experiences [14]. As reported, we did not find indications for an effect of time since diagnosis on number of questions considered as important, or rank order of most important questions. We further deployed a broad recruitment strategy, both through clinics and via the internet. Possibly, different strategies appeal to different types of patients, which may be a strength if it leads to higher uptake but also a limitation as we do not know how this may affect the results. As a proxy for recruitment, we assessed whether patients who completed the paper versus online version of the questionnaire significantly differed in gender, age, education, number of days since diagnosis and number of questions considered to be important or very important and found none. Finally, we offered a ready-made list of questions to participants, which may have inflated the importance that they assigned to questions. Future research could look at what questions patients come up with themselves, for example by asking patients to record the questions they actually have in the first weeks after diagnosis, and ask them to rate their importance.

Patients consider many questions important to be answered in the first period after the (likely) diagnosis of pancreatic cancer, especially about the disease (natural course, stage, cure), treatment harms and procedures), pain and fatigue. Individual patients may distinctly differ from one another in their information preferences and preferences may be difficult to estimate without explicitly discussing them. Patients do further not seem to wish to avoid hearing about confronting issues, even in the context of a cancer diagnosis with such a poor prognosis. In order to avoid information overload and confusion in patients, the results of this study can help doctors to prioritize the information that they address. It could be helpful to additionally offer patients information on paper or online for their future reference.