Decisional needs of patients with recurrent high-grade glioma and their families

Abstract

Background High-grade gliomas are aggressive and life-threatening brain tumors. At the time of recurrence, the patients and their families need to decide on future treatment. None of the treatment options are curative, and tradeoffs between benefits and harms must be made. This study aimed to explore the patients’ and family members’ decisional needs when making the decision. Methods We performed semi-structured individual interviews with patients and family members to explore their experiences during the decision making. A phenomenological hermeneutical analysis was conducted. Results A total of 15 patients and 14 family members aged 22-79 years participated in the study. Most of the family members were partners to the patient. The findings were centered around three interrelated and concurrently occurring themes: (I) A patient- and family-centered decision making, including the subtheme of being a supportive family member; (II) Balanced information and a trustful professional encounter; and (III) The value of hope. We found that both the patients and family members preferred to be involved in the decision making and that a trustful relationship with the surgeon, balanced and tailored information, and sufficient time to make the decision were essential. The experience of hope had a significant influence on patients’ decisions. Conclusion This study found that patient and family involvement, balanced information, and hope were the primary decisional needs of patients and family members at the time of recurrent high-grade glioma. Patients and family members can have different decisional needs, making individual needs assessment essential to decisional support.

Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma

“…The initial cards were equipped with option headings but had no content ( Figure 3 a). For the patient narrative card, we selected 12 patient narratives from the extensive qualitative data material generated in a previous study on patient and family member decisional needs [ 22 ].…”

“…For patients with recurrent HGG, involvement in SDM can be challenging due to reduced cognitive abilities, such as memory, concentration, understanding, and information processing [ 19 , 20 , 21 ]. Nevertheless, these patients are faced with complicated and preference-sensitive decisions [ 9 ] and they require tailored decision support [ 9 , 19 , 20 , 21 , 22 ]. The reduced decision-making capacity also translates into a dependency on family support and family involvement in decision making [ 7 , 8 ].…”

Large language models as decision aids in neuro-oncology: a review of shared decision-making applications

“…The medical world, laden with its complex terminology and detailed information, can be intimidating (Koch-Weser et al 2009 ). Many neuro-oncology patients, despite earnest efforts, find themselves overwhelmed and unable to fully understand their treatment options, hindering their capacity to make informed decisions (Sorensen Von Essen et al 2022b ). There is an urgent need for new communications strategies that effectively bridge this gap in health literacy and patient self-efficacy.…”

“…In today's information-rich age, there is another prevalent challenge: information overload. Patients and caregivers are often swamped by the sheer volume of information available, especially on the internet (Sorensen Von Essen et al 2022b ). This information overload can lead to decision paralysis, making it hard for them to discern and understand treatment options and potential outcomes.…”