Rimmele, Harald1; Bartès, Beate2; Büttner, Matthias3
1 Bundesverband Schilddrüsenkrebs – Ohne Schilddrüse leben e.V. (German Thyroid Cancer Patient Support Organisation), Berlin, Germany
2 Association Vivre sans Thyroïde (France Thyroid Patient Support Organisation), Léguevin, France
3 Institut für Medizinische Biometrie, Epidemiologie und Informatik (IMBEI) an der Universität Mainz, Mainz, Germany
Background: In 2016, the German (G) and the French (F) patient organization performed a bilingual survey on the cancer journey and quality of life of thyroid cancer patients, inspired by the international patient survey done in 2010 by seven patient organizations (Hormones, Banach et al. 2013).
AIM: Evaluate the impact of a thyroid cancer diagnosis on the patient’s quality of life. Identify differences between treatment protocols. Point out aspects needing improvement. Identify changes with regard to the 2010 survey.
Methods: Anonymous online questionnaire with 70 questions, March to June 2016. Participants: 1.217 (85.1% women), recruited via the German and French discussion forums, newsletters and social media. 50.8% were from Germany, 31.8% from France.
Results: Only 35% received clear written information on their disease and on treatment options at the time of diagnosis. 80% looked for information on the Internet. The responders indicated that the information provided by patient organizations was the most useful information found during their cancer journey. Many patients report a decreased quality of life. 37.2% changed hospital/doctor at least once (or intend to change), mainly due to inadequate care and unconsidered quality of life aspects. 36.3% take dietary supplements (complementary or alternative treatments), with the main aim to relieve increased fatigue.
The survey brought up a huge amount of additional results regarding the details of diagnosis, treatment and follow-up of thyroid cancer patients, pointing out various differences between G and F: reasons for consulting, specialist in charge of the follow-up, use of fine needle aspiration …