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Hormones

, Volume 12, Issue 3, pp 428–438 | Cite as

Results of the Thyroid Cancer Alliance international patient/survivor survey: Psychosocial/informational support needs, treatment side effects and international differences in care

  • Rita Banach
  • Beate Bartès
  • Kate Farnell
  • Harald Rimmele
  • Joan Shey
  • Susanne Singer
  • Frederik A. Verburg
  • Markus Luster
  • Thyroid Cancer Alliance
Research paper

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.

DESIGN

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

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Copyright information

© Hellenic Endocrine Society 2013

Authors and Affiliations

  • Rita Banach
    • 1
  • Beate Bartès
    • 2
  • Kate Farnell
    • 3
  • Harald Rimmele
    • 4
  • Joan Shey
    • 5
  • Susanne Singer
    • 6
  • Frederik A. Verburg
    • 7
  • Markus Luster
    • 8
  • Thyroid Cancer Alliance
  1. 1.Thyroid Cancer Canada/Cancer de la thyroïde CanadaTorontoCanada
  2. 2.Vivre sans ThyroïdeLéguevinFrance
  3. 3.Butterfly Thyroid Cancer TrustNewcastleUK
  4. 4.Bundesverband Schilddrüsenkrebs — Ohne Schilddrüse leben e.V.BerlinGermany
  5. 5.Light of Life FoundationManalapanUSA
  6. 6.Division of Epidemiology and Health Services Research, Institute of Medical Biostatistics, Epidemiology, and InformaticsUniversity of MainzMainzGermany
  7. 7.Department of Nuclear MedicineRWTH Aachen University HospitalAachenGermany
  8. 8.Department of Nuclear Medicine, Department of Nuclear MedicineUniversity Hospital MarburgMarburgGermany

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