Patient-reported quality of life outcome measures in the thyroid cancer population.

Background survivors. In addition to conventional metrics of quality of care, quality of life (QoL) assessment in thyroid cancer patients is imperative. Thyroid cancer survivors face unique impediments to health-related QoL (HRQoL), including thyroid-specific symptoms and exposure to disease-related stressors-including fear of recurrence and financial toxicity-over a prolonged survival period. Survey instruments currently used to assess HRQoL in TC survivors may be insufficient to accurately capture the burden of disease in this population. We aimed to identify the HRQoL instruments in the literature which have been applied in the thyroid cancer survivor population, and to present the psychometric properties of the scales and indexes that have been used. We hypothesize that few instruments have shown evidence of validity in this population. Summary - Of the 927 articles identified by search criteria, only 28 studies using 15 HRQoL instruments met inclusion criteria. Of the 15 HRQoL instruments identified, 9 were psychometric health status instruments and 6 were preference-based indexes, but none had been validated in the thyroid cancer survivor population. While the majority of reviewed studies demonstrated impaired psychological and emotional well-being in thyroid cancer survivors, these findings were not uniformly demonstrated across studies, and the longevity of the impact of thyroid cancer on HRQoL was variably reported. Conclusions -- Discrepancies in the literature regarding the impact of thyroid cancer survivorship on HRQoL emphasize the challenges of accurately assessing patient perspectives, reinforcing the importance of using well-constructed instruments to measure patient-reported outcomes in the target population. Care providers involved in the treatment of thyroid cancer survivors should be aware of longitudinal effects on HRQoL, especially pertaining to chronic psychological debilitation. Further development and rigorous validation of thyroid cancer-specific instruments will allow for better data gathering and understanding of the barriers to achieving high long-term HRQoL in thyroid cancer survivors throughout their long post-survival treatment course.