OPEN Research Support

Helle Sørensen von Essen
Department of Neurosurgery, Odense University Hospital

Projekt styring
Projekt status    Sampling ongoing
Data indsamlingsdatoer
Start 01.02.2019  
Slut 31.01.2022  

Shared decision-making for patients with recurrence of a high grade glioma; development and alfatesting of a patient decision aid

Short summary

At time of recurrence of a high-grade glioma, the patients and their relatives need to make a difficult decision about further treatment and care. All options are subject to uncertainty and none of them are curative. 

In this study, we will explore the different stakeholders' perspectives on the decision-making process and use this knowledge in the development of a patient decision aid.


High-Grade Gliomas (HGGs) are primary malignant brain tumours.

The average survival rate is approximate  2-3 years. The patients experience a high and complex symptom burden caused by the disease as well as the treatment. This includes both physical, cognitive and psychosocial impairments. Furthermore, cognitive impairment can lead to reduced decision-making capacity. Patient-clinician communication and information of patients and relatives about treatment options therefore requires special attention.

Despite optimal primary treatment, a majority of the patients will experience tumour recurrence due to the aggressive and infiltrative nature of HGGs. At time of recurrence the patients and their relatives will be presented to different options of treatment and care. 

All options are subject to uncertainty regarding effect, outcomes and complications. In addition, none of them are curative. Therefore, it is imperative to involve the patients' personal preferences and values in the decision-making process.

The objective of this PhD-project is to generate knowledge about patients' and relatives' perspectives on decision-making and support Shared Decision Making between patients, their relatives and the clinical specialist, through the development of a Patient Decision Aid targeted the specific situation of patients with recurrent HGG.

Description of the cohort

The project includes three different cohorts:

1) Adult patients with recurrence of a high-grade glioma where there is both a surgical and an oncological treatment option. 

2) The closest relative of the above patients.

3) Experienced clinicians with specific knowledge about the patient cohorte.  

Data and biological material

Data from semi-structured interviews with patients, relatives and clinicians.

Demographic data is collected from all participants. Data about the disease and treatment trajectory is collected from medical journals for the participating patients.

Collaborating researchers and departments

Department of Neurosurgery, Odense University Hospital

  • Professor Frantz Rom Poulsen

Department of Clinical Oncology, Lillebaelt Hospital

  • Professor Karina Dahl Steffensen

Department of Oncology, Copenhagen University Hospital

  • Associate professor Karin Piil