Thyroid cancer (TC) is the most common malignancy of the endocrine system that affects the thyroi... more Thyroid cancer (TC) is the most common malignancy of the endocrine system that affects the thyroid gland. It is usually treatable and, in most cases, curable. The central issues are how to improve knowledge on TC, to accurately identify cases at an early stage that can benefit from effective intervention, optimise therapy, and reduce the risk of overdiagnosis and unnecessary treatment. Questions remain about management, about treating all patients in referral centres, and about which treatment should be proposed to any individual patient and how this can be optimised. The European Alliance for Personalised Medicine (EAPM) hosted an expert panel discussion to elucidate some of the challenges, and to identify possible steps towards effective responses at the EU and member state level, particularly in the context of the opportunities in the European Union’s evolving initiatives—notably its Beating Cancer Plan, its Cancer Mission, and its research funding programmes. Recommendations eme...
Background Most thyroid cancers of follicular origin have a favorable outcome. Only a small perce... more Background Most thyroid cancers of follicular origin have a favorable outcome. Only a small percentage of patients will develop metastatic disease, some of which will become radioiodine refractory (RAI-R). Important challenges to ensure the best therapeutic outcomes include proper, timely, and appropriate diagnosis; decisions on local, systemic treatments; management of side effects of therapies; and a good relationship between the specialist, patients, and caregivers. Methods With the aim of providing suggestions that can be useful in everyday practice, a multidisciplinary group of experts organized the following document, based on their shared clinical experience with patients with RAI-R differentiated thyroid cancer (DTC) undergoing treatment with lenvatinib. The main areas covered are patient selection, initiation of therapy, follow-up, and management of adverse events. Conclusions It is essential to provide guidance for the management of RAI-R DTC patients with systemic therapies, and especially lenvatinib, since compliance and adherence to treatment are fundamental to achieve the best outcomes. While the therapeutic landscape in RAI-R DTC is evolving, with new targeted therapies, immunotherapy, etc., lenvatinib is expected to remain a first-line treatment and mainstay of therapy for several years in the vast majority of patients and settings. The guidance herein covers baseline work-up and initiation of systemic therapy, relevance of symptoms, multidisciplinary assessment, and patient education. Practical information based on expert experience is also given for the starting dose of lenvatinib, follow-up and monitoring, as well as the management of adverse events and discontinuation and reinitiating of therapy. The importance of patient engagement is also stressed.
Introduction Les associations de patients « vivre sans thyroide » (VST), France, et ‘Ohne Schildd... more Introduction Les associations de patients « vivre sans thyroide » (VST), France, et ‘Ohne Schilddruse leben’ (OSD), Allemagne ont effectue une enquete commune pour : evaluer l’impact du diagnostic d’un cancer de la thyroide sur la qualite de vie. Identifier les differences entre les protocoles therapeutiques. Identifier les aspects a ameliorer. Identifier les changements par rapport au sondage international de la Thyroid Cancer Alliance (TCA) de 2010. Methodologie L’etude est realisee grâce a un questionnaire bilingue, developpe par les associations de patients, mis en ligne de mars a mai 2016. Ce questionnaire reprend le sondage international de la TCA (presente a l’ITC 2010 a Paris et publie dans « Hormones » en 2012), en l’ameliorant et en y ajoutant des questions plus specifiques sur les details de la prise en charge. Resultats Au 17 mai 2016, l’enquete etait toujours en cours et totalisait alors 1037 repondants. L’analyse complete des resultats sera faite a partir du 1er juin. ...
Introduction Vivre sans thyroide (VST), association de patients reconnue d’interet general, s’est... more Introduction Vivre sans thyroide (VST), association de patients reconnue d’interet general, s’est interessee a la qualite de vie (QdV) des personnes ayant ete operees de la thyroide. L’objectif de l’etude est de comparer la QdV entre les personnes atteintes d’un cancer et celles atteintes d’une pathologie differente. Methodologie L’etude est realisee grâce a un questionnaire de QdV en ligne accessible au public entre mars et avril 2015. Il combine un volet generique (MOS-SF36) et un volet specifique elabore par VST. Les moyennes de scores sont comparees aux valeurs de reference pour une population generale, et deux sous-groupes (cancer et pathologie autre) sont compares entre eux. Resultats Les resultats portent sur 1142 repondants âges en moyenne de 45 ans (18–84) residant en France. Les scores moyens de 8 des 9 dimensions du MOS-SF36 sont inferieurs aux valeurs de reference et le score de la dimension « capacite physique » est superieure. Les dimensions « bien-etre emotionnel », « limitations liees a l’etat emotionnel », « vitalite » et « fonctionnement social », sont de plus de 10 points inferieures aux valeurs de reference. En revanche aucune difference significative n’est detectee entre les patients souffrant d’un cancer (n = 476) et ceux atteints d’une pathologie autre (n = 666). Conclusion La QdV des personnes operees de la thyroide est inferieure a celle de la population generale. Des analyses plus detaillees sont en cours pour distinguer differents sous-groupes, dont un tri entre les pathologies, le type et la date de l’operation.
ObJEctIVE: to comprehensively assess the experience of a large, diverse cohort and identify poten... more 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 sugge...
Patient and public involvement (PPI) is increasingly recognised as an important and positive infl... more Patient and public involvement (PPI) is increasingly recognised as an important and positive influence in medical research. We report on a two day PPI event on Graves&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; orbitopathy (GO), which aimed to promote future research. The event consisted of plenary lectures and breakout group sessions. Participants were asked to select a maximum of 6 research questions out of 16 prioritised by a PPI event two years earlier, and translate the most important ones to study design outlines. Five research topics were selected. Of these, 4 were modified in the breakout sessions. The selected and modified research questions were re-formulated using the Patient Intervention Comparator Outcome (PICO) principle. Of these, 4 were translated into potential study design outlines comprising 3 prospective randomised studies (psychological support in GO, early total thyroid ablation in prevention of GO, prevention of GO with selenium) and one prospective observational study (prediction of GO). Highest priority was given to psychological support in GO, and prediction of GO. Unmet patient needs voiced by patients and the public informed and guided the selection process and placed emphasis on the importance of prediction and prevention of GO. The outcomes from this event will provide strong evidence of PPI in future bids for funding these studies.
Patient and public involvement (PPI) is increasingly recognised as an important and positive infl... more Patient and public involvement (PPI) is increasingly recognised as an important and positive influence in medical research. We report on a two day PPI event on Graves&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; orbitopathy (GO), which aimed to promote future research. The event consisted of plenary lectures and breakout group sessions. Participants were asked to select a maximum of 6 research questions out of 16 prioritised by a PPI event two years earlier, and translate the most important ones to study design outlines. Five research topics were selected. Of these, 4 were modified in the breakout sessions. The selected and modified research questions were re-formulated using the Patient Intervention Comparator Outcome (PICO) principle. Of these, 4 were translated into potential study design outlines comprising 3 prospective randomised studies (psychological support in GO, early total thyroid ablation in prevention of GO, prevention of GO with selenium) and one prospective observational study (prediction of GO). Highest priority was given to psychological support in GO, and prediction of GO. Unmet patient needs voiced by patients and the public informed and guided the selection process and placed emphasis on the importance of prediction and prevention of GO. The outcomes from this event will provide strong evidence of PPI in future bids for funding these studies.
To comprehensively assess the experience of a large, diverse cohort and identify potential care i... more 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. 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%). 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 in...
Thyroid cancer (TC) is the most common malignancy of the endocrine system that affects the thyroi... more Thyroid cancer (TC) is the most common malignancy of the endocrine system that affects the thyroid gland. It is usually treatable and, in most cases, curable. The central issues are how to improve knowledge on TC, to accurately identify cases at an early stage that can benefit from effective intervention, optimise therapy, and reduce the risk of overdiagnosis and unnecessary treatment. Questions remain about management, about treating all patients in referral centres, and about which treatment should be proposed to any individual patient and how this can be optimised. The European Alliance for Personalised Medicine (EAPM) hosted an expert panel discussion to elucidate some of the challenges, and to identify possible steps towards effective responses at the EU and member state level, particularly in the context of the opportunities in the European Union’s evolving initiatives—notably its Beating Cancer Plan, its Cancer Mission, and its research funding programmes. Recommendations eme...
Background Most thyroid cancers of follicular origin have a favorable outcome. Only a small perce... more Background Most thyroid cancers of follicular origin have a favorable outcome. Only a small percentage of patients will develop metastatic disease, some of which will become radioiodine refractory (RAI-R). Important challenges to ensure the best therapeutic outcomes include proper, timely, and appropriate diagnosis; decisions on local, systemic treatments; management of side effects of therapies; and a good relationship between the specialist, patients, and caregivers. Methods With the aim of providing suggestions that can be useful in everyday practice, a multidisciplinary group of experts organized the following document, based on their shared clinical experience with patients with RAI-R differentiated thyroid cancer (DTC) undergoing treatment with lenvatinib. The main areas covered are patient selection, initiation of therapy, follow-up, and management of adverse events. Conclusions It is essential to provide guidance for the management of RAI-R DTC patients with systemic therapies, and especially lenvatinib, since compliance and adherence to treatment are fundamental to achieve the best outcomes. While the therapeutic landscape in RAI-R DTC is evolving, with new targeted therapies, immunotherapy, etc., lenvatinib is expected to remain a first-line treatment and mainstay of therapy for several years in the vast majority of patients and settings. The guidance herein covers baseline work-up and initiation of systemic therapy, relevance of symptoms, multidisciplinary assessment, and patient education. Practical information based on expert experience is also given for the starting dose of lenvatinib, follow-up and monitoring, as well as the management of adverse events and discontinuation and reinitiating of therapy. The importance of patient engagement is also stressed.
Introduction Les associations de patients « vivre sans thyroide » (VST), France, et ‘Ohne Schildd... more Introduction Les associations de patients « vivre sans thyroide » (VST), France, et ‘Ohne Schilddruse leben’ (OSD), Allemagne ont effectue une enquete commune pour : evaluer l’impact du diagnostic d’un cancer de la thyroide sur la qualite de vie. Identifier les differences entre les protocoles therapeutiques. Identifier les aspects a ameliorer. Identifier les changements par rapport au sondage international de la Thyroid Cancer Alliance (TCA) de 2010. Methodologie L’etude est realisee grâce a un questionnaire bilingue, developpe par les associations de patients, mis en ligne de mars a mai 2016. Ce questionnaire reprend le sondage international de la TCA (presente a l’ITC 2010 a Paris et publie dans « Hormones » en 2012), en l’ameliorant et en y ajoutant des questions plus specifiques sur les details de la prise en charge. Resultats Au 17 mai 2016, l’enquete etait toujours en cours et totalisait alors 1037 repondants. L’analyse complete des resultats sera faite a partir du 1er juin. ...
Introduction Vivre sans thyroide (VST), association de patients reconnue d’interet general, s’est... more Introduction Vivre sans thyroide (VST), association de patients reconnue d’interet general, s’est interessee a la qualite de vie (QdV) des personnes ayant ete operees de la thyroide. L’objectif de l’etude est de comparer la QdV entre les personnes atteintes d’un cancer et celles atteintes d’une pathologie differente. Methodologie L’etude est realisee grâce a un questionnaire de QdV en ligne accessible au public entre mars et avril 2015. Il combine un volet generique (MOS-SF36) et un volet specifique elabore par VST. Les moyennes de scores sont comparees aux valeurs de reference pour une population generale, et deux sous-groupes (cancer et pathologie autre) sont compares entre eux. Resultats Les resultats portent sur 1142 repondants âges en moyenne de 45 ans (18–84) residant en France. Les scores moyens de 8 des 9 dimensions du MOS-SF36 sont inferieurs aux valeurs de reference et le score de la dimension « capacite physique » est superieure. Les dimensions « bien-etre emotionnel », « limitations liees a l’etat emotionnel », « vitalite » et « fonctionnement social », sont de plus de 10 points inferieures aux valeurs de reference. En revanche aucune difference significative n’est detectee entre les patients souffrant d’un cancer (n = 476) et ceux atteints d’une pathologie autre (n = 666). Conclusion La QdV des personnes operees de la thyroide est inferieure a celle de la population generale. Des analyses plus detaillees sont en cours pour distinguer differents sous-groupes, dont un tri entre les pathologies, le type et la date de l’operation.
ObJEctIVE: to comprehensively assess the experience of a large, diverse cohort and identify poten... more 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 sugge...
Patient and public involvement (PPI) is increasingly recognised as an important and positive infl... more Patient and public involvement (PPI) is increasingly recognised as an important and positive influence in medical research. We report on a two day PPI event on Graves&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; orbitopathy (GO), which aimed to promote future research. The event consisted of plenary lectures and breakout group sessions. Participants were asked to select a maximum of 6 research questions out of 16 prioritised by a PPI event two years earlier, and translate the most important ones to study design outlines. Five research topics were selected. Of these, 4 were modified in the breakout sessions. The selected and modified research questions were re-formulated using the Patient Intervention Comparator Outcome (PICO) principle. Of these, 4 were translated into potential study design outlines comprising 3 prospective randomised studies (psychological support in GO, early total thyroid ablation in prevention of GO, prevention of GO with selenium) and one prospective observational study (prediction of GO). Highest priority was given to psychological support in GO, and prediction of GO. Unmet patient needs voiced by patients and the public informed and guided the selection process and placed emphasis on the importance of prediction and prevention of GO. The outcomes from this event will provide strong evidence of PPI in future bids for funding these studies.
Patient and public involvement (PPI) is increasingly recognised as an important and positive infl... more Patient and public involvement (PPI) is increasingly recognised as an important and positive influence in medical research. We report on a two day PPI event on Graves&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; orbitopathy (GO), which aimed to promote future research. The event consisted of plenary lectures and breakout group sessions. Participants were asked to select a maximum of 6 research questions out of 16 prioritised by a PPI event two years earlier, and translate the most important ones to study design outlines. Five research topics were selected. Of these, 4 were modified in the breakout sessions. The selected and modified research questions were re-formulated using the Patient Intervention Comparator Outcome (PICO) principle. Of these, 4 were translated into potential study design outlines comprising 3 prospective randomised studies (psychological support in GO, early total thyroid ablation in prevention of GO, prevention of GO with selenium) and one prospective observational study (prediction of GO). Highest priority was given to psychological support in GO, and prediction of GO. Unmet patient needs voiced by patients and the public informed and guided the selection process and placed emphasis on the importance of prediction and prevention of GO. The outcomes from this event will provide strong evidence of PPI in future bids for funding these studies.
To comprehensively assess the experience of a large, diverse cohort and identify potential care i... more 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. 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%). 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 in...
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