Support needs and survivorship concerns of thyroid cancer patients

The number of thyroid cancer (TC) survivors is increasing exponentially worldwide. However, little research details the unmet information, support needs, and survivorship concerns of TC patients.

Two thousand TC survivors completed an online survey examining the importance of and recollection of receiving care addressing three areas at the time of diagnosis and treatment: medical/physical issues, practical matters, and emotional/psychological concerns. A summed score was generated of (1) the "important" responses for each category, and (2) if they remembered receiving that information/support. Regression analyses explored the relationship between each total score of importance and a patient's demographics, treatment, and recollection of receiving each domain of information/support.

Respondents were generally female (88.6%), part white (91.1%), and had eventual total thyroidectomy (95.8%) and radioiodine (80.6%). Mean age at diagnosis was 42.1 years and average time from diagnosis 5.43 years. Less than 50% of patients recalled receiving information regarding long-term and health effects after treatment, or any practical matter or emotional/psychological concern. Multivariate linear modeling with forward stepwise regression revealed that age, sex, and survivorship time were important predictors for recollecting having received information and support for medical/physical issues, practical needs, and emotional/psychological concerns after controlling for treatment and other demographic factors (all 0.001 or <0.001). Similar modeling demonstrated that female sex and feeling that they received care in a given category (medical/physical issues, practical needs, or emotional/psychological concerns) predicted the importance placed on those specific needs when controlled for other variables (all 0.001 or <0.001).

TC patients place high importance on most types of information and concerns. However, the majority of information and support needs are unmet, which varies based on demographic and treatment factors as well as the importance placed on each specific topic of information. Qualitative research is needed to further focus and refine these unmet needs that should be followed by targeted interventions.