Patient-Reported Quality-of-Life Outcome Measures in the Thyroid Cancer Population

Abstract

Background: There is an escalating worldwide population of thyroid cancer (TC) survivors. In addition to conventional metrics of quality of care, quality-of-life (QoL) assessment in TC patients is imperative. TC survivors face unique impediments to health-related quality of life (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 TC survivor population, and to present the psychometric properties of the scales and indexes that have been used. We hypothesized 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 TC survivor population. While the majority of reviewed studies demonstrated impaired psychological and emotional well-being in TC survivors, these findings were not uniformly demonstrated across studies, and the longevity of the impact of TC on HRQoL was variably reported. Conclusions: Discrepancies in the literature regarding the impact of TC 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 TC survivors should be aware of longitudinal effects on HRQoL, especially pertaining to chronic psychological debilitation. Further development and rigorous validation of TC-specific instruments will allow for better data gathering and understanding of the barriers to achieving high long-term HRQoL in TC survivors throughout their long postsurvival course.

Keywords: patient-reported outcomes; quality of life; thyroid cancer.

FIG. 1.

Schematic presentation of methodology used and selection criteria.