Cancer-related worry in Canadian thyroid cancer survivors.

CONTEXT: Little is known about cancer-related worry in thyroid cancer survivors. OBJECTIVES: We quantified cancer-related worry in Canadian thyroid cancer survivors and explored associated factors. DESIGN, SETTING, AND PARTICIPANTS: We performed a cross-sectional, self-administered, written survey of thyroid cancer survivor members of the Thyroid Cancer Canada support group. Independent factors associated with cancer-related worry were identified using a multivariable linear regression analysis. MAIN OUTCOME MEASURE: We used the Assessment of Survivor Concerns (ASC) questionnaire, which includes questions on worry about diagnostic tests, second primary malignancy, recurrence, dying, health, and children's health. RESULTS: The response rate for eligible members was 60.1% (941 of 1567). Most respondents were women (89.0%; 837 of 940), and the age was < 50 years in 54.0% of participants (508 of 941). Thyroid cancer was diagnosed within ≤ 5 years in 66.1% of participants (622 of 940). The mean overall ASC score was 15.34 (SD, 4.7) (on a scale from 6 [least worry] to 24 [most worry]). Factors associated with increased ASC score included: younger age (P < .001), current suspected or proven recurrent/persistent disease (ie, current proven active disease or abnormal diagnostic tests) (P < .001), partnered marital status (P = .021), having children (P = .029), and ≤5 years since thyroid cancer diagnosis (P = .017). CONCLUSIONS: In a population of Canadian thyroid cancer survivors, cancer-related worry was greatest in younger survivors and those with either confirmed or suspected disease activity. Family status and time since thyroid cancer diagnosis were also associated with increased worry. More research is needed to confirm these findings and to develop effective preventative and supportive strategies for those at risk.

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

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.