Shared decision making for patients with high-grade glioma and their families

BACKGROUND

High-grade gliomas (HGGs) are aggressive and life-threatening brain tumors. The average survival time for patients diagnosed with the most malignant HGGs is less than two years, and most patients experience tumor recurrence during the first year.

When the tumor recurs, a decision about future treatment and care must be made, and any decision might affect the patient’s survival time and quality of life. Therefore, it is essential that the decision is congruent with the patient’s preferences and what matters most to the specific patient.

Because of the severe prognosis, multiple symptoms, and uncertain future, the patients and their families suffer from profound emotional distress that challenges their decision making and rational weighing of benefits and disadvantages. In this situation, the patients and their families need help clarifying their values and preferences, weighing the consequences, and making the best possible decision for the specific patient.

These processes are all part of the concept called shared decision making (SDM). SDM has proven to be a valuable approach in other patient populations when treatment and care decisions are called for. However, knowledge about SDM involving patients with HGG is limited, which led to the overall aim of this PhD study: to explore SDM from the perspective of patients with recurrent HGG and increase decisional support to HGG patients and their families. 

DESIGN AND METHODS

The PhD study comprised four sub-studies:

STUDY I (PAPER I) - A systematic review of the current knowledge about SDM from the perspectives of patients with HGG: We performed systematic searches in the MEDLINE, CINAHL, PsycINFO, and EMBASE databases. The retrieved records were reviewed against the inclusion criteria, and eligible studies were assessed for methodological quality. Descriptive data from the included studies were extracted and gathered in a narrative synthesis.

STUDY II-A (PAPER II) - A qualitative, interview-based study exploring the decisional needs of patients with recurrent HGG and their family members: Semi-structured individual interviews with patients and family members were carried out to explore their experiences during the decision making at the time of tumor recurrence. A phenomenological hermeneutical analysis was conducted to gain a comprehensive understanding. 

STUDY II-B (NOT PUBLISHED) - A qualitative interview-based study exploring the clinicians’ perspectives on patient decisional needs and SDM for patients with HGG: Individual interviews with experienced clinicians from different departments and professional backgrounds were performed. A semi-structured interview guide was developed and used to guide the interviews. The transcripts were analyzed using a directed content analysis approach.

STUDY III (PAPER III) - Development and alpha testing of a patient decision aid (PtDA) to increase decision support to patients with HGG and their families: The PtDA was developed based on a generic template designed by the Danish Center for Shared Decision Making and followed the International Patient Decision Aids Standards. A team of patients, family members, and clinicians developed the PtDA through an iterative process. Potential users alpha tested the PtDA with an emphasis on acceptability and usability.

RESULTS

The main finding across all sub-studies was that patients with HGG preferred an SDM approach and wanted to be involved in decisions about treatment and care. However, some patients experienced the responsibility of making the decision as a burden.

The important role of the family members in the decision making was uniformly emphasized by patients, family members, and clinicians. Patients with cognitive or communicative impairments were especially dependent on their family's support. Supporting the patient was, additionally, a high priority to the family members, and they requested the clinicians to acknowledge them as a valid part of the decisional team. In some cases, the patient and the family member valued the possible outcomes of potential treatment options differently. These situations challenged the decision making.

Patients and family members emphasized the significance of having a trustful relationship with the clinician, and they needed the clinician to present balanced and tailored information about the potential benefits and disadvantages of the treatment options. Additionally, nurses were highlighted for their essential role in repeating and explaining the doctors' information. The review findings indicated that satisfaction with information during the decision-making process might improve the patients' emotional well-being.  

The patients’ and families’ experiences of hope were crucial in the decision making, and they needed the clinicians to support their hope despite the severe prognosis. Hope was often linked to the availability of treatments and positive expectations about the possible treatment outcomes. The hope of prolonging life tended to increase the patient's willingness to proceed with high-risk treatments.

The PtDA was assessed by patients, family members, and clinicians to be useful in preparing and supporting the patients and facilitating SDM during the consultation. It was expected to increase the involvement of both patients and family members and provide valuable support during decision-making. The tangible design, simple wording, and pictograms were highlighted as essential aspects of the PtDA that made it understandable even for cognitively impaired patients.

CONCLUSIONS

Patients with HGG and their families want to be involved in SDM and need decision support that is tailored to their individual needs, including balanced information about the options and a trustful relationship with the clinician. The family’s role is essential, but divergent values between the patient and the family can challenge the decision making. The developed PtDA was assessed to be useful in preparing and supporting patients, families, and clinicians in SDM, and it was found to be understandable even for patients with cognitive impairments. Future research is needed to evaluate the potential effect of the PtDA on SDM for patients with HGG and their families.