Results of the Thyroid Cancer Alliance international patient/survivor survey: Psychosocial/informational support needs, treatment side effects and international differences in care
To comprehensively assess the experience of a large, diverse cohort and identify potential care improvements, the thyroid cancer Alliance, an international patient/survivor group coalition, surveyed thyroid cancer patients/survivors worldwide.
English, German, French or Spanish versions of a self-developed 43-item questionnaire were completed, predominantly online, by 2398 respondents from the US (37.9%), Germany (21.3%), the UK (11.5%), canada (11.4%), France (9%), and 35 other countries. Females and differentiated thyroid carcinoma patients each comprised ~87% of respondents. Diagnosis occurred at age 30–59 years in 71.8%, within <1 (1–5) year(s) before survey completion in 16.4% (55%).
At diagnosis, no psychological (or other professional) support was offered to 92.6% (76.9%) of respondents, no patient organization referral was made to 84.1%, and no clear written disease/treatment information was given to 63%. The five leading care improvement suggestions involved increased informational/psychosocial support. Among respondents undergoing neck surgery pre-survey completion (n = 2380), 72.5% reported at least transient complications, including hypocalcemia (38.8%), voice problems (36.2%), numbness (28.7%), or restricted neck/shoulder movement (27.6%).
This large, multinational, patient/survivor-initiated cross-sectional survey suggests that thyroid cancer patients/survivors
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