Background Shared decision-making (SDM) has proven to be a valuable approach in different patient populations when treatment decisions are called for. Along the disease trajectory of high-grade glioma (HGG), patients are presented with a series of treatment decisions. At the same time, HGG patients often experience cognitive deterioration and reduced decision-making capacity. This study aimed to review current knowledge about shared decision-making from the perspective of the HGG patient. Methods Systematic searches were performed in MEDLINE, CINAHL, PsycINFO and EMBASE. Studies were reviewed against the inclusion criteria and assessed for methodological quality. Descriptive data from the included studies were extracted and a narrative synthesis of the findings was performed. Results The searches resulted in 5051 original records. Four studies involving a total of 178 HGG patients fulfilled the inclusion criteria. The narrative synthesis revealed that most HGG patients in the included studies appreciated an SDM approach and that sufficient information and involvement increased patients’ emotional wellbeing. The use of a patient decision aid showed the potential to increase knowledge, decrease uncertainty and affect the treatment decision-making of HGG patients. Conclusion The results indicate that many HGG patients prefer an SDM approach and that SDM can lead patients towards improved emotional wellbeing. The evidence is weak, however, and firm conclusions and practice guidelines concerning SDM in HGG patients cannot be made. Future research is warranted to improve decision support for HGG patients.

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.

When high-grade gliomas recur, patients, their families, and clinicians face difficult medical decisions. There is no curable treatment, and the treatment options all come with a risk of complications and adverse effects. The patients are often cognitively affected, and they need tailored decision support. The objective of this study was to develop a patient decision aid (PtDA) targeted at patients with recurrent high-grade gliomas. Based on existing knowledge and the International Patient Decision Aids Standards, the PtDA was developed through an iterative process. The PtDA was alpha-tested by potential users to assess its acceptability and usability. The development team comprised three clinicians, two patients, two family members, and a researcher. The fifth version of the PtDA was submitted to the alpha test. Eleven patients, nine family members, and eleven clinicians assessed the PtDA and found it acceptable. Three changes were made during the alpha test. Most participants perceived the PtDA to prepare patients for decision making and improve consultations. The involvement of potential users was emphasized during the development and alpha test process. The PtDA was assessed as useful and acceptable by patients, family members, and clinicians in the decision-making situation of recurrent high-grade glioma.