Song Duimel

SHARING IS CARING: Shared decision-making in complex surgical oncology communication using animated videos

Treatment decision-making in complex surgical oncology is challenging, as patients often face choices that weigh survival against long-term implications and quality of life (QoL). These decisions are medically complex, emotionally charged, and highly sensitive to individual preferences. In such contexts, a strong and collaborative shared decision-making (SDM) process between patients and clinicians, and when present, informal caregivers, is essential to arrive at treatment choices that reflect the patient’s values, goals, and preferences 1–3. This is particularly true for head and neck cancer (HNC), where patients frequently undergo invasive treatment that can profoundly affect their daily functioning and QoL 4–7. Effective communication and information provision in this context are critical for delivering high-quality care, especially since many patients with HNC experience decisional conflict and regret 8–10. Despite the clear relevance of SDM in this context, both research and practical implementation of SDM in head and neck oncology remain limited 11. This dissertation, therefore, explored whether and how SDM in complex surgical oncology can be improved by focusing on oral cancer surgery. Specifically, it consists of two parts.

We first explored how support-seeking behaviors and communication practices can influence patient involvement in decision-making before and during the clinical encounter. We aimed to gain insight into how the actions of both patients and clinicians contribute to treatment communication and SDM (Part I: Support-seeking practices and shared decision-making). Accordingly, we conducted two quantitative studies: one focusing on the online support-seeking behavior of patients with cancer (Chapter 2) and the other investigating the current perceived and observed SDM levels in head and neck oncology (Chapter 3). Next, we explored the role of audiovisual materials as a means of mediated patient education, examining their potential to improve communication and SDM among patients, clinicians, and informal caregivers in complex surgical oncology (Part II: Supportive audiovisual materials). For this reason, we systematically reviewed the literature on audiovisuals (Chapter 4) and explored the perspectives of patients, clinicians, and informal caregivers as potential end-users of (2D/3D) animated videos (Chapter 5).

Part I: Support-seeking practices and shared decision-making

In Chapter 2, we first adopted a broader perspective on patients’ support-seeking behavior to gain an understanding of why patients with cancer seek informational and/or emotional support online. This knowledge is fundamental to understanding how patients might prepare for or complement conversations with their clinician (e.g., head and neck surgeon), including consultations in which a (complex) decision has to be taken. Building on this, we aimed to profile patients based on their motives for seeking informational and/or emotional support online and to explore how these profiles differed in terms of psychological and background characteristics, as well as in patients’ perceptions of health care services. Patients and cancer survivors were sent a survey via email by Kanker.nl that asked about their motives for seeking informational and/or emotional support online. Additionally, measures for their distress, coping style, eHealth literacy, and perception of health care services were included in the survey, alongside questions about their demographic and medical characteristics. In total, 181 participants completed the survey. An exploratory hierarchical cluster analysis was conducted to identify distinct patient profiles, and additional analyses, such as one-way ANOVA and Chi-square, were conducted to investigate how these patient profiles differed.

Three patient profiles were identified, each differing in their online support-seeking behavior. The most active type of patients were the “overall seekers”. Compared to the other two groups, patients in this group were the most motivated to use Kanker.nl, to seek informational support, complement information from healthcare professionals, and address conflicting information. Moreover, they appeared to be the most motivated to give and/or receive emotional support online. The “occasional seeker” was the second largest group of patients identified. This group was moderately motivated to use Kanker.nl to find complementary information and to deal with conflicting information, and the least motivated to give and/or receive peer support. The third type of patients, the “contact exchangers”, were the least motivated to use Kanker.nl to find information that complements that of healthcare professionals or to deal with conflicting information. However, they were motivated to use the website for peer contact. Furthermore, these patient profiles varied not only in their motives for going online but also in their level of eHealth literacy. Interestingly, the contact exchangers were the most eHealth-literate of the three patient groups. The findings of this study suggest that, beyond relying on clinicians as their primary resource, patients may have different motives to seek additional informational and/or emotional support. These insights can help clinicians deliver accurate, reliable (online) support that is tailored to each patient’s needs, preferences, and personal circumstances as part of the SDM process.

To determine whether SDM needs improvement in complex surgical oncology decision-making, such as in oral cancer, it was important to gain insight into current communication and information-provision practices in this field. In Chapter 3, we explored the uptake of SDM in daily practice in head and neck oncology. A total of 42 treatment decision-making consultations were audio-recorded amongst five head and neck surgeons (range 5 to 7 consultations per surgeon) at an outpatient clinic. Each of the 36 recordings was carefully analyzed by two independent assessors, who scored the occurrence of SDM on all seven items of the OPTIONMCC+ instrument to assess the objective SDM level. In addition, perceived SDM level and preferences for patient involvement were examined using a survey comprising the SDM-Q-Doc/SDM-Q-9 questionnaires and the Control Preference Scale. Both surgeons and patients filled out the survey after consultation.

The results showed that SDM is only moderately applied in current treatment decision-making in head and neck oncology. Surgeons’ efforts to apply SDM were particularly short in those elements most central to the process, with higher OPTION-scores reflecting discussion of treatment options rather than the elicitation and integration of patient values, goals, and preferences. Conversely, both surgeons and patients perceived a relatively high level of SDM practices during consultation. While both surgeons and patients mostly preferred a collaborative approach to decision-making, in almost two-thirds of cases, the surgeons’ assumptions about patients’ preferences for involvement were correct. In thirteen cases, the surgeon’s assumptions did not align with the actual preference of the patient. The duration of the consultation and patient OPTION-score were correlated with the observed SDM level of surgeons. We found no other associations with surgeons' observed SDM level. Our analyses in this study thus indicate that both information provision and SDM in oral surgical oncology require improvement, as patients’ values, goals, and preferences are often only limitedly elicited and integrated when deliberating treatment options.

Part II: Supportive audiovisual materials

To better grasp how SDM in the context of complex surgical oncology can be improved, we aimed to explore whether audiovisual materials could have potential for information provision as part of the SDM process. Following this, in Chapter 4, we systematically reviewed the literature to assess the effectiveness of audiovisual materials providing pretreatment information in oncology on patient outcomes. After retrieval of 15,138 records from five different electronic databases and screening against the inclusion criteria, 37 full-text articles were found to be eligible for inclusion. From each study, the results and multiple study and intervention characteristics were extracted. Results were categorized into immediate, intermediate, and long-term outcomes of the audiovisual intervention, drawing on the Six Function Model of Medical Communication 12.

The results suggest that audiovisual materials in oncology patient education hold promise for improving specific immediate outcomes, such as knowledge, particularly when standard verbal care is compared with standard care complemented with a recorded video or health animation. Slightly longer after exposure, the audiovisuals also led to positive effects on patients’ knowledge, understanding, anxiety, and physiological responses, including heart rate, blood pressure, and respiratory rate. However, results indicated no overall benefits of using audiovisual materials, for example, when both the intervention and control groups received supplementary educational materials. Finally, no long-term outcomes, if measured at all, were found to be significantly in favor of the intervention group receiving an audiovisual. Ultimately, our review suggests that audiovisual materials, such as (animated) videos, can support the SDM process between surgical oncology patients and clinicians by improving patient knowledge and understanding, albeit mainly in the short term and when provided alongside standard verbal care.

As a first step in developing audiovisual materials to support the SDM process, Chapter 5 aimed to provide insight into the most effective approaches to designing and implementing animated videos for complex treatment decision-making in the context of oral surgical oncology. To gain this knowledge, we explored the needs and preferences of patients, their caregivers, and clinicians regarding the content, design, and adoption requirements of (2D/3D) animated videos for complex surgical oncology communication focused on oral cancer. Six focus group sessions and two individual interviews with patients (n = 17), informal caregivers (n = 2), and clinicians (n = 13) were analyzed using a reflexive thematic approach. In total, eleven themes emerged from the analysis regarding current communication practices and the content, design, and adoption requirements of animated videos. Importantly, although some common ground was identified among the various end-user groups, several group-specific differences and concerns also emerged, particularly regarding the content, design, and integration into clinicians' workflows and the patient journey.

Patients, informal caregivers, and clinicians preferred animated videos that included information on the medical and technical aspects of treatment and postoperative care, as well as their impact on daily life. However, patients strongly favored including information about all aspects of the care journey. We also found that patients preferred comprehensive information, whereas clinicians and informal caregivers expressed concern that providing too much detail might create unrealistic expectations. Clinicians and informal caregivers further indicated that videos should promote patient autonomy, provide coping strategies, and address the emotional impact of treatment. Most patients and clinicians favored animated formats because they were considered less confronting than real-life video recordings. However, the 3D-animated videos were reported to be fear-provoking because of how realistically and in detail they portrayed the information. Regarding the videos' design, all end-users appeared to share a similar perspective. A video should be simple, easy to follow, and accurately convey a single topic. Finally, we identified substantial differences among patients, informal caregivers, and clinicians regarding perceived usefulness and ease of use, as well as the best moment to implement a video in the patient journey. Although most participants perceive (3D animated) videos as valuable, informal caregivers and some clinicians questioned their suitability as supplementary resources. Surgeons expressed concerns about workflow disruption and consultation time, whereas several paramedics perceived efficiency and time-related benefits when patients viewed the videos with a clinician before or during consultations. Paramedics suggest discipline-specific videos, so patients can gradually absorb the information throughout their patient journey. Overall, this study suggests that developing and implementing animated videos in complex surgical oncology, such as oral cancer surgery, is challenging. Differences in end-users' needs, preferences, and concerns complicate the development of animated videos that inform and empower patients while minimizing distress and managing expectations realistically.

This dissertation contributes to the healthcare communication field in several ways. First, it adds to the limited existing research on SDM about treatment decisions in complex surgical oncology, specifically oral cancer. Second, the mixed-methods approach provides a comprehensive understanding of the communication processes and support-seeking practices that influence patient involvement in decision-making and offers insight into the steps needed to improve SDM in complex surgical oncology. Third, it shows that additional information resources, such as audiovisual materials, alongside the standard care patients in oral surgical oncology receive, are promising, especially in light of the projected increase in oral cancer incidence and the corresponding need for greater digitalization in healthcare. Fourth, treatment decision-making in surgical oral oncology does not necessarily require intricate visual tools, such as the virtual biomedical twin models discussed in the introduction, to effectively inform patients with oral cancer. Potentially, “simpler” visuals, such as health animations, could be a solution to improve patient outcomes. In line with this, this dissertation highlights how challenging SDM in oral cancer treatment and the development of audiovisual material already are. Finally, it underscores the importance of interdisciplinary collaboration when conducting communication research in a complex medical setting.