Results of the Thyroid Cancer Alliance international patient/survivor survey: Psychosocial/informational support needs, treatment side effects and international differences in care
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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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- 2.Pitoia F, Licht S, 2007 Evaluation of the effect of thyroid hormone withdrawal on the quality of life of patients with differentiated thyroid carcinoma (in Spanish). Glánd Tir Paratir 16: 25–29.Google Scholar
- 16.Federation of International Pyscho-Oncology Societies, 2012 Psychosocial care in cancer care: situation in the countries represented within the Federation of Psycho-Oncology Societies. Psycho-Oncology, in press.Google Scholar
- 17.Van Nostrand D, Wartofsky L, Bloom G, Kulkarni KP (eds) 2010 Thyroid cancer: A guide for patients, second edition, Keystone Press, Pasadena, MD, USA; pp. 1–434.Google Scholar
- 18.Luster M, Felbinger R, Dietlein M, Reiners C, 2005 Thyroid hormone withdrawal in patients with differentiated thyroid carcinoma: a one hundred thirty-patient tiated thyroid carcinoma: a one hundred thirty-patient pilot survey on consequences of hypothyroidism and a pharmacoeconomic comparison to recombinant thyrotropin administration. Thyroid 15: 1147–1155.CrossRefPubMedGoogle Scholar
- 19.Schroeder PR, Haugen BR, Pacini F, et al, 2006 A comparison of short-term changes in health-related quality of life in thyroid carcinoma patients undergoing diagnostic evaluation with recombinant human thyrotropin compared with thyroid hormone withdrawal. J Clin Endocrinol Metab 91: 878–884.CrossRefPubMedGoogle Scholar
- 21.Pacini F, Ladenson PW, Schlumberger M, et al, 2006 Radioiodine ablation of thyroid remnants after preparation with recombinant human thyrotropin in differentiated thyroid carcinoma: results of an international, randomized, controlled study. J Clin Endocrinol Metab 91: 926–932.CrossRefPubMedGoogle Scholar
- 26.Dietlein M, Verburg FA, Luster M, Reiners C, Pitoia F, Schicha H, 2011 One should not just read what one believes: the nearly irresolvable issue of producing truly objective, evidence-based guidelines for the management of differentiated thyroid cancer. Eur J Nucl Med Mol Imaging 38: 793–798.CrossRefPubMedGoogle Scholar