Patient-Reported Symptom Burden Among Thyroid Cancer Survivors: Retrospective Cohort Study

Survivorship care models that extend beyond recurrence surveillance to ones that also address treatment-related symptoms are needed. Using data obtained in routine clinical care, we aimed to examine patient-reported symptom burden among adult thyroid cancer survivors.

Between September 2019 and September 2022, adults were electronically administered the MDASI-Thy, a patient-reported outcome measure that measures symptom severity and interference, within 7 days before their visit at a dedicated thyroid cancer survivorship clinic. The MDASI-Thy generates (1) core symptom severity, (2) thyroid-specific symptom severity, and (3) symptom interference scores, where lower is better. High alert values (HAVs) were defined for four symptoms: Distress (Upset), Pain, Sad, and Shortness of Breath. Multivariable generalized linear models examined associations of patient, cancer, and treatment factors with scores and any HAV.

Among 1,557 thyroid cancer survivors, 864 (55.5%) responded. Respondents were a median of 5 years from diagnosis (IQR, 4-8) and predominantly female (79.1%), and most had papillary thyroid carcinoma (92.5%). Mean (standard deviation) scores were 1.20 (1.34) for core severity, 0.99 (1.26) for thyroid-specific severity, and 1.07 (1.80) for interference. Fatigue (11.5%) and Disturbed Sleep (11.3%) were the most common severe symptoms. HAVs occurred in 72 survivors (8.3%), of whom 54 (75%) had a documented plan addressing the HAV. Higher symptom burden was associated with female sex, Black race, greater comorbidity, active smoking, and total thyroidectomy.

Routine patient-reported symptom screening in thyroid cancer survivorship identified generally low symptom burden but meaningful variations, with a subset reporting severe symptoms, functional interference, and HAVs requiring action.