Assessing Quality of Life Tools in Medullary Thyroid Cancer Patients

Background Currently available thyroid cancer quality of life (QoL) tools tend to be focused on issues more relevant to patients with differentiated thyroid cancer (DTC) rather than medullary thyroid cancer (MTC). As MTC is a neuroendocrine tumour (NET) patients often have symptoms more in common with patients with these types of tumours rather than patients with other types of thyroid cancer.

MTC presents as a sporadic tumour in approximately 75% of cases and as an inherited disease in 25%. The inherited forms of MTC constitute part of the Multiple Endocrine Neoplasia disorders. Patients with Multiple Endocrine Neoplasia (MEN) may therefore have a number of medical conditions which can impact on their quality of life.

Patients with rare diseases can face additional barriers and concerns such as limited patient information resources, the potential for lack of understanding amongst family and friends and they will inevitably encounter healthcare professionals who do not have experience of managing their rare condition.

It can be difficult to fully appreciate the impact of a cancer diagnosis or an inherited syndrome, raised and rising tumour markers and disease symptoms on a patient's quality of life.

Quality of life is multi faceted and is affected by emotional, social and functional issues as well as disease related problems. Quality of life tools can increase the information a healthcare professional obtains about a patient thus facilitating the consultation as well as improving the patient's satisfaction with the consultation.