SAT-329 Impact of Familial Non-medullary Thyroid Cancer on Quality of Life: A Comparative Study of Affected and Unaffected Family Members

Abstract Disclosure: A. Makarewicz: None. E. Chuki: None. P. Veeraraghavan: None. N. Uttarkar Vikram: None. S. Auh: None. J. Welch: None. S. Gubbi: None. J. Klubo-Gwiezdzinska: None. Introduction: Familial non-medullary thyroid cancer (FNMTC) accounts for 3-9% of all NMTC cases. It can occur as a component of inherited cancer syndromes or as the predominate disease. The genetic risk factors for non-syndromic FNMTC remain poorly understood, and screening strategies are not well established. These uncertainties, along with fear of developing cancer, might cause psychosocial distress in affected families, negatively impacting their quality of life (QoL). Currently, no studies have assessed QoL in families with FNMTC. This study investigated if there is a difference in QoL between patients affected by FNMTC and their relatives considered at-risk (“unaffected”). Methods: The Thyroid Patient-Reported Outcomes (ThyPRO) questionnaire, validated for thyroid disease patients, was used to assess QoL. ThyPRO includes 85 questions grouped into 13 scales, with each question rated on a 0-4 Likert scale, where higher scores indicate worse symptoms. As part of an Institutional Review Board- approved FNMTC cohort study (clinicaltrials.gov ID NCT01109420), ThyPRO was completed during outpatient visits or electronically using REDCap. The minimal important change in QoL was set at 11 points, as values ranging from 6-14 have been reported as clinically significant (Nordqvist et al Endocr Connect 2021). The sample size necessary to detect this difference with 80% power and alpha of 0.05 was calculated to be at least 68 patients (34 per group). Scale scores were calculated as the mean of relevant questions and transformed to a 0-100 range. Statistical analysis was conducted with unpaired t-tests and chi-square tests for demographic data, and the Mann-Whitney test for ThyPRO scale comparisons. Results: Seventy individuals from the FNMTC cohort completed ThyPRO, including 36 affected (AF) by NMTC and 34 unaffected (U-AF). Family pedigrees showed that AF members per family ranged from 2 to 10, with 68.6% from families with three or more AF members. Among the AF group, 80.5% had classic papillary TC. There was no difference in age (53.5 ± 16.28 vs 46.91 ± 18.46, p=0.118) between AF and U-AF individuals. Similarly, there was no difference in sex breakdown (69.4% vs 52.9% female, p=0.219). For ThyPRO scales, AF family members reported significantly worse scores than U-AF members for hypothyroid symptoms (p=0.009), cosmetic complaints (p=0.002), and eye symptoms (p=0.006). They also scored worse on the overall QoL standalone question (p=0.001). However, composite QoL scores did not differ significantly between the two groups (p=0.449). Conclusion: This exploratory study suggests FNMTC may be associated with specific QoL burdens in affected members, such as hypothyroid and eye symptoms, and cosmetic complaints. Despite screening of unaffected family members, their QoL does not appear to be significantly impacted, which could guide the development of clearer FNMTC screening recommendations. Presentation: Saturday, July 12, 2025