The Importance of Shared Decision Making While Treating Glioblastoma Multiforme

When I read the article “The Importance of Shared Decision-Making for Patients with Glioblastoma” I immediately thought back to my experience with Emanuele and I found several elements that I will briefly talk about and on which I completely agree.

For patients with glioblastoma, the practice of shared decision making can lead to a better quality of life for the patient and better outcomes. The importance of assessing the patient’s perspective on symptoms and treatment is widely recognized in oncology, and efforts in neuro-oncology are increasingly focused on implementing appropriate assessments of patient-reported outcomes in clinical trials and clinical practice. The article summarizes the perspectives of support associations for brain tumor patients on shared decision making. In fact, when a patient is affected by glioblastoma multiforme, there are further critical issues that make the shared decision-making process even more important:

• Often there is a need to carry out neurosurgical treatment with urgency and time available to evaluate all treatment options and some choices may preclude participation in some clinical trials (for example the availability of a frozen glioblastoma sample);
• It is difficult to find support groups and other patients with whom to share information, so one often feels lonely and isolated;
• Sometimes the disease leads to cognitive deficits that make it difficult for the patient to make decisions about treatment options.

These are the key points that emerged from the discussion and reported in the article to improve the shared decision-making process between patients, caregivers, healthcare professionals and specialists:

• Refer to patient support organizations and websites that give useful information for patient and caregiver training to improve their knowledge of the disease and improve understanding of information shared by the medical staff.
• Describe all potential therapeutic choices and explain the meaning of each to help patients choose the treatment path that best suits the patient’s needs
• Use a trusted contact person of the patient who is able to coordinate the patient’s care path, communicate with specialists if possible together with the patient and otherwise on behalf of the patient
• Encourage patients to seek a second opinion to improve shared trust and responsibility
• Follow up with patients at home using now common tools such as videoconferencing after they have had a chance to assimilate the information provided during the first visit and refer to online patient support groups to reduce patient and caregiver anxiety
• Consider the patient’s quality of life preferences when discussing the aggressiveness of a treatment plan in order to improve treatment outcomes as reported by the patient.

The benefits of shared decision making are well documented. For healthcare professionals, it provides better quality of care provided and greater patient satisfaction. For patients, it has been shown to improve their health and adherence to treatment recommendations and experience can improve health care outcomes too. A multidisciplinary alignment guarantees a coherent approach to communication. Multiple conversations between healthcare professionals addressing all treatment options provide a more comprehensive overview and improve dissemination of information. Open communication empowers patients and healthcare professionals with goals, expectations and values, resulting in greater alignment of goals and more patient-centered treatment management. Engaging patients and healthcare professionals in a two-way dialogue allows both to feel more comfortable. For patients with GBM, this style of communication can also help reduce patient / caregiver anxieties by sharing the emotional burden.
The patient’s voice should be heard and incorporated into all aspects of the glioblastoma treatment pathway. For this to happen, all members of the treatment team, including neurosurgeons, radiation therapists, neuro-oncologists, medical oncologists, neuropsychologists, nurses, should engage in shared decision making throughout the treatment pathway. In practice, the decision-making process should fit into standard of care practice.

In my experience of treatment of Emanuele’s glioblastoma I can say that I still encountered great difficulties in shared decision making and teamwork. For many reasons the different specialists have not interacted with each other despite our invitations to do so, probably due to the existence of rigid procedures to follow or simply due to lack of time or habit and certainly I have not found someone to guide us in the treatment, inform us about active clinical trials and help us make better choices. Sometimes I have also felt a certain aversion towards the request for second opinions or towards the same shared decision process … in practice either we totally rely on the ideas of the single specialist or the decisions must be made by the patient and his caregiver alone. There is therefore ample space for improvements. The same possibility of remote assistance and remote visits that could reduce the stress of the patient when traveling even more in a period in which limitations are in place due to the COVID-19 pandemic is not practiced except in very rare cases.

Several food for thought then, and to conclude, I ask you again and with even more strength to continue to help the fundraising campaign Glioblastoma.it for CUSP9v3 Phase II-III for Emanuele by sharing the link in order to spread the word and raise awareness as many people possible.