Butterfly Thyroid Cancer Trust : Surveys : International Thyroid Cancer Patient Survey 2010

Many thanks to all of you who took part!

Published studies on the thyroid cancer patient journey (1-29) generally have utilised physician- or nurse-designed rather than patient-designed survey instruments.

Frequently, these studies’ samples have been relatively small, and have comprised only referral centre patients.

Moreover, the studies often have focused on particular thyroid cancers and on relatively narrow areas rather than on a broader range of the patient experience.

The Thyroid Cancer Alliance (TCA), a coalition of eight national thyroid cancer patient advocacy and support organisations from Europe and the Americas, has sought to address these gaps.

We therefore, in cooperation with Genzyme Corporation, conducted an international survey of patients with any primary thyroid tumour regarding their experiences with their disease and its care, including both treatment and support.

The survey utilised a questionnaire designed by patients with the support of a professional market research firm. This project’s objectives included:

Identifying areas for improvement in the care of patients with thyroid cancer
Elucidating how thyroid cancers have been treated in different nations in recent years, and how treatment protocols differ from country to country
Assessing the life impacts of a thyroid cancer diagnosis from a wide range of patients.

The TCA will use the survey findings to stimulate further research and to educate the thyroid cancer community, including patients, families, caregivers and administrators.

Our results should be interpreted cautiously: as in all such surveys, a selection bias may exist among respondents for individuals with notably negative or positive experiences with thyroid cancer.

Nonetheless, this very comprehensive survey takes into account responses from a large, diverse sample of thyroid cancer patients in many countries – including a considerable proportion treated outside referral centres.

The survey thus offers a wealth of information for the thyroid cancer community:

The appreciable rate of delay in the first specialist visit suggests a need for generalist and specialist physicians and healthcare administrators to ensure streamlined referral and appointment systems; there may be a need for additional specialists and specialised treatment centres in some areas.
There appears to be a strong need for improved support and information at the stage of diagnosis and primary treatment.
The substantial rates of surgical complications may suggest a need to more frequently use surgeons specialising in thyroid and neck procedures, in line with current medical consensus.

[February 2011]