TCA Ancillary Meeting on Multikinase Inhibitors – the Patient Perspective

Patient information for patients considering MKI

treatment

Beate Bartès

Beate Bartès

• Founder/president of “Vivre sans Thyroïde”, France• Thyroid cancer survivor (2000)• Secretary, Thyroid Federation International (TFI)• Member of the Thyroid Cancer Alliance• Patient reviewer:

• French National Cancer Institute (INCa): Patient & GP brochures on thyroid cancer• Institute Gustave Roussy/French Cancer League: patient leaflet on thyroid cancer• Leaflet “True/false about thyroid cancer”, L. Leenhardt• SFORL surgeon association: leaflet on patient information before thyroidectomy• French Cancer League: patient reviewer committee for clinical trial patient

information

There is no such thing as “good” cancer …… and some thyroid cancers are particularly bad …

Tribute to Isabelle

Thoughts for Christine

Introduction

Patients with advanced, progressive and symptomatic metastatic thyroid cancer (refractory DTC or MTC) may benefit from a treatment with multikinase inhibitors (MKIs)

However, these treatments have various side effects, the decision is not easy to take, and needs extensive information and discussion with the medical team, to compare the “pros” and “cons”

During the treatment, access to information, easy contact with the medical team, and exchange of experience with fellow patients via support groups/patient associations are crucial for the early management of side effects and for emotional support

Patient leaflets on MKI treatment

TCA - MKI Patient information for DTC• What is “refractory” cancer?• How do “targeted biological therapies” work?• What are multikinase inhibitors?• Action• Administration• Limits (PFS ≠ cure)• Side effects & their management

• Useful information (patient organisations, websites)

Patient leaflets on MKI treatment

TCA - MKI Patient information for MTC

• How do “targeted biological therapies” work?• What are multikinase inhibitors?• Action• Administration• Limits (PFS ≠ cure)• Side effects & their management

• Useful information (patient organisations, websites)

Characteristics of reliable patient information

• Evidence-based• Up-to-date• Patient-doctor partnership – patients review doctor-

driven information, and vice versa • Readability testing – does it make sense to patients? • Endorsements by professional bodies • Include address(es) of patient support organisations • Reviewed and if necessary updated regularly

Conclusions

Good information:• allows understanding and shared decision-taking• improves compliance• helps to manage side-effects• gives a better quality of life

”The well-informed patient has an easier journey than the ill-informed patient”