Results of the Thyroid Cancer Alliance international patient/survivor survey: Psychosocial/informational support needs, treatment side effects and international differences in care.
Hormones (Athens)
; 12(3): 428-38, 2013.
Article
en En
| MEDLINE
| ID: mdl-24121384
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 have substantial unmet informational/psychosocial support needs and suffer frequent treatment morbidity; disease management and some patient/survivor experience differ appreciably among countries.
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Colección:
01-internacional
Base de datos:
MEDLINE
Contexto en salud:
2_ODS3
Problema de salud:
2_cobertura_universal
Asunto principal:
Apoyo Social
/
Neoplasias de la Tiroides
Tipo de estudio:
Clinical_trials
/
Etiology_studies
/
Incidence_studies
/
Observational_studies
/
Prevalence_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Aspecto:
Determinantes_sociais_saude
Límite:
Adult
/
Female
/
Humans
/
Male
/
Middle aged
País/Región como asunto:
America do norte
/
Europa
Idioma:
En
Revista:
Hormones (Athens)
Asunto de la revista:
ENDOCRINOLOGIA
Año:
2013
Tipo del documento:
Article
País de afiliación:
Canadá