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.

Self‐reported medication adherence in differentiated thyroid cancer survivors: Role of illness perception and medication beliefs

“…A new finding obtained from this study was that the anxiety and depression scores were significantly higher in the nonadherent group, advocating previous results indicating emotional stress as an important factor determining LT4 adherence 32 . A recently published study revealed that health‐related quality of life in patients with thyroid cancer was negatively influenced by impaired psychological and emotional well‐being due to anxiety, depression, and fatigue 33 . Roberts et al reported that DTC survivors, even those with normal TSH levels and euthyroid state felt that they had missing or inadequate knowledge of lifestyle factors affecting recurrence, negative consequences, symptoms of recurrence, and importance and side effects of medication 34 .…”

“…32 A recently published study revealed that health-related quality of life in patients with thyroid cancer was negatively influenced by impaired psychological and emotional well-being due to anxiety, depression, and fatigue. 33 Roberts et al reported that DTC survivors, even those with normal TSH levels and euthyroid state felt that they had missing or inadequate knowledge of lifestyle factors affecting recurrence, negative consequences, symptoms of recurrence, and importance and side effects of medication. 34 Disease-free patients with a history of DTC treated with TSH-suppressive doses of LT4 often experience potential psychological adverse effects of thyroid hormone excess, and consequently show poor compliance with their treatment.…”

Mental Health in Postoperative Thyroid Patients During the COVID-19 Pandemic

“…A possible explanation is that patients' lives gradually return to normal after surgery. However, our results are novel in that patient mental health symptoms worsened again 1 year after surgery; this unanticipated result could stem from an increase in fear of recurrence after 1 year had elapsed (40)(41)(42).…”

Better Quality and More Robust Instruments Are Needed for Patient-Reported Quality-of-Life Surveys in Thyroid Cancer Survivors

“…In addition to demonstrating the variability in measurement of HR QoL in thyroid cancer patients, this article (2) illuminates several key areas for further study. Anxiety, depression, and fatigue have been cited in multiple studies reviewed as contributors to poor HR QoL in thyroid cancer survivors (2). Given that fatigue and mood problems have also been reported in surveyed patients taking thyroid hormone replacement for hypothyroidism (3), it remains unclear whether these symptoms may be related to thyroid cancer or thyroid hormone replacement.…”