title: Results of the Thyroid Cancer Alliance international patient/survivor survey: Psychosocial/informational support needs, treatment side effects and international differences in care.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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%).
  
  
  RESULTS
  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%).
  
  
  CONCLUSIONS
  This large, multinational, patient/survivor-initiated cross-sectional survey suggests that thyroid cancer patients/survivors have substantial unmet informational/psychosocial support needs and suffer frequent treatment morbidity; disease management and some patient/survivor experience differ appreciably among countries.
authors.affiliation: Thyroid Cancer Canada/Cancer de la thyroϊde Canada, Toronto, Canada.
authors.forename: Rita
authors.initials: R
authors.lastname: Banach
authors.forename: Beate
authors.initials: B
authors.lastname: Bartès
authors.forename: Kate
authors.initials: K
authors.lastname: Farnell
authors.forename: Harald
authors.initials: H
authors.lastname: Rimmele
authors.forename: Joan
authors.initials: J
authors.lastname: Shey
authors.forename: Susanne
authors.initials: S
authors.lastname: Singer
authors.forename: Frederik A
authors.initials: FA
authors.lastname: Verburg
authors.forename: Markus
authors.initials: M
authors.lastname: Luster
mesh_terms: D000328:Adult; D002170:Canada; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D005260:Female; D005602:France; D005858:Germany; D006801:Humans; D007457:Iodine Radioisotopes / Q000009:adverse effects / Q000627:therapeutic use; D008297:Male; D008875:Middle Aged; D012017:Referral and Consultation; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology; D013964:Thyroid Neoplasms / Q000473:pathology / Q000523:psychology* / Q000532:radiotherapy / Q000601:surgery; D013965:Thyroidectomy / Q000009:adverse effects; D006113:United Kingdom; D014481:United States
chemical_list: D007457:Iodine Radioisotopes