Prognostic counselling in head and neck cancer

Background:

In the Netherlands, about 2700 new patients with head and neck squamous cell carcinoma (HNSCC) are diagnosed annually. In the majority of cases, treatment consists of surgery, radiotherapy, chemotherapy and combinations of these modalities. All types of treatment are associated with high morbidity, sometimes compromising vital functions. Accurate counselling for treatment options, survival rates and quality of life is therefore important. Without the knowledge of a reliable individual prognosis, the patient and doctor both will tend to choose treatment according to protocol-based advices by a multidisciplinary team, which is usually the most extensive treatment. Extensive treatment is often associated with major morbidity. While, in patients with a poor prognosis, survival rates will not increase substantially following aggressive treatment. Especially in these patients, the balance between survival and quality of life could be improved by choosing a less aggressive and non-protocol based treatment. Our hypothesis is that a change to individualized prognostic counselling leads to less decisional conflict, less extensive treatment, and an improved quality of life in patients with HNSCC.



Methods:

In a prospective clinical trial with sequential cohorts we want to investigate the influence of prognostic counselling in patients with HNSCC. For this purpose, the departments of Otorhinolaryngology – Head and Neck Surgery of the Erasmus MC and of the Leiden University Medical Center developed during the last decade dedicated software packages incorporating a prognostic model, in which an individualized prognosis for each patient with HNSCC can be calculated (OncologIQ). Besides localisation and TNM-classification of the tumor, patient characteristics such as gender, age, medical history and comorbidity (ACE-27) are taken into account. The outcome of this calculation is expressed in a time-bound percentage (as for example 5-year survival rate), applicable for that specific patient. This prognostic model is internally and externally validated. Newly diagnosed patients with HNSCC at Erasmus MC, with a curative intent, will be included. Prognosis will be communicated using absolute percentages visually supported by graphics. Questionnaires on decisional conflict, quality of life and decisional regret will be taken to measure outcomes.

Conclusion:

In an era of shared decision making, personalized medicine and focus on quality of life, we should not avoid the dialogue between patient and doctor about their prognosis using facts and figures. In our opinion individualized prognostic counselling, using unique patient characteristics, will support informed values based decisions, and therefore will lead to improved communication and quality of life. One should not be afraid of making nonstandard treatment choices in shared decision making when major morbidity or even mortality and a significant decrease in quality of life could be avoided. With the implementation of our innovative prognostic model, OncologIQ, in clinical practice for patients with HNSCC, we aim to improve communication and quality of life: in other words, true personalized medicine.

In the Netherlands, about 2700 new patients with head and neck squamous cell carcinoma (HNSCC) are diagnosed annually. In the majority of cases, treatment consists of surgery, radiotherapy, chemotherapy and combinations of these modalities. All types of treatment are associated with high morbidity, sometimes compromising vital functions. Accurate counselling for treatment options, survival rates and quality of life is therefore important. Without the knowledge of a reliable individual prognosis, the patient and doctor both will tend to choose treatment according to protocol-based advices by a multidisciplinary team (RWHHT), which is usually the most extensive treatment. Extensive treatment is often associated with major morbidity. While, in patients with a poor prognosis, survival rates will not increase substantially following aggressive treatment. Especially in these patients, the balance between survival and quality of life could be improved by choosing a less aggressive and non-protocol based treatment. Our hypothesis is that a change to individualized prognostic counselling leads to less decisional conflict, less extensive treatment, and an improved quality of life in patients with HNSCC.

Outcomes will be measured by obtaining several questionnaires on decisional conflict, shared decision making and quality of life.

- At time of diagnosis of HNSCC patients will answer questionnaires on medical history (ACE27), quality of life (EORTC-QLQ30, EORTC-H&N35, EQ5D) and anxiety (HADS).

- After 1 week, a prognosis and decision consultation will follow. Included patients will answer 2 questionnaires on decisional conflict (Decisional Conflict Scale and Control Preferences Scale).

- 3 months after their treatment included patients will answer questionnaires on Quality of Life (EORTC QLQ 30, EORTC H&N35, EQ5D), on anxiety (HADS) and on decisional regret (Decisional Regret Scale). Patients will also answer a question about the exact therapy they got. The investigator will compare this answer with the medical records to investigate if this therapy was protocol based or not.

The first cohort receives current prognostic counselling. The next cohort receives individualized prognostic counselling, calculated by OncologIQ, software on the computer.