Joint Symposium 2: EANM/ETA-CRN: What the Doctor Tells and the Patient Understands - Update

on Thyroid Cancer Communication

Patient information in thyroid cancer

Judith Taylor (Thyroid Cancer Alliance)Beate Bartès (Vivre sans Thyroide)

Judith Taylor

• Secretary/Director, Thyroid Cancer Alliance www.thyroidcanceralliance.org

• Patient representative, British Thyroid Association (BTA) Thyroid Cancer Guidelines committee (3rd revised edition 2014)

• Patient reviewer, British Medical Journal

• Occasional reviewer for Macmillan Cancer Support

• Former Editor, patient information, British Thyroid Foundation (patient organisation) (2005-2015)

• Former Publisher, Elsevier (1974-2008)

• Thyroid cancer survivor (dx 1950)

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 the follow-up of 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

Disclosures

1) I or one of my co-authors hold a position as an employee, consultant, assessor or advisor for a pharmaceutical, device or biotechnology company. NO

2) I or one of my co-authors receive support from a pharmaceutical, device or biotechnology company.

The Thyroid Cancer Alliance receives financial support from Genzyme-Sanofi and Bayer

3) I or one of my co-authors hold property rights/patents for (radio)pharmaceuticals, medical devices or medical consulting firms. NO

4) I or one of my co-authors have written articles for (radio)pharmaceutical, medical device, biotechnology or consulting companies during the last 5 years. NO

‘What the doctor tells and the patient understands’

Patient information and thyroid cancer

1. The impact of information on patient care and well-being

2. The information landscape: France, Germany, Spain, UK3. Best practice examples of development of patient

materials4. Conclusions – characteristics of reliable patient

information

1. The impact of information on patient care and well-beingThe birth of patient information and doctor-patient collaboration?

H.G. Wells (British writer and diabetes patient): "it is proposed to form a Diabetic Association open ultimately to all diabetics, rich or poor, for mutual aid and assistance, and to promote the study, the diffusion of knowledge, and the proper treatment of diabetes in this country … The experiment, it was felt, might not end with diabetics …" Letter to The Times, 15 February 1934

Source: https://www.diabetes.org.uk/About_us/Who_we_are/History/HG-Wellss-letter-to-The-Times/ (accessed 1 Oct 2015)

1. The impact of information on patient care and well-beingJenkins (Royal Free Hospital, London, UK) surveyed 2331 cancer patients in a multi-centre study in 1999-2000 and found:

• 87% wanted all possible information, both good and bad news • 98% preferred to know whether or not their illness was cancer• the vast majority of patients with cancer want a great deal of

specific information concerning their illness and treatment• “Failure to disclose such information on the grounds that

significant numbers of patients prefer not to know is untenable.”

V. Jenkins, L. Fallowfield, J. Soul Information needs of patients with cancer: results from a large study in UK cancer centres British Journal of Cancer, 84 (2001)

1. The impact of information on patient care and well-beingBanach et al (Thyroid Cancer Alliance) surveyed 2398 thyroid cancer patients worldwide in 2010 about their patient experience and found 63% received no clear written disease/treatment information, and 84.1% were not referred to a patient organisation. They recommended:

• Improvement in the clarity and comprehensiveness of written explanatory materials for patients and significant others, and

• referrals to, and closer relationships with, local and national thyroid patient/survivor groups

Banach et al for the Thyroid Cancer Alliance. Results of the Thyroid Cancer Alliance international patient/survivor survey: Psychosocial/informational support needs, treatment side effects and international differences in care. Hormones, 12 (2013)

1. The impact of information on patient care and well-being - UKNational Health Service (NHS) UK Information Prescriptions

• An informed patient is better placed to make decisions about their care and well-being, and manage changes in their health status.

• Information gives people the power and confidence to become partners in their care.

• It helps them to regain a sense of control over their lives and can reduce the fear and loneliness that the diagnosis of a life-threatening or long-term condition can bring.

Source: http://www.nhs.uk/ipg/pages/AboutThisService.aspx (accessed 1 Oct 2015)

1. The impact of information on patient care and well-being - FranceVivre Sans Thyroïde surveyed 1142 patients in France about their quality of life (QoL) after thyroidectomy (Spring, 2015)• 63% of the patients said they received sufficient

information, which contributed efficiently to the decision-taking process about surgery• 35% felt they did not receive sufficient information• Information and a supportive (or not) environment

had more effect on QoL than the type of disease and number of treatments • Findings suggest there is still a need for better

informational and emotional support – especially before and after surgery and after a cancer diagnosis

1. The impact of information on patient care and well-being - SpainAECAT - The Spanish association for patients with thyroid cancer - conducted a survey of 360 thyroid cancer patients in 2015. The results are still being analysed but a few key points emerged:

• 59% were dissatisfied with the information they received through the healthcare system (Sanitary System)

• 81% said they needed more detailed written information, including reliable information on the internet

• 53% said they wanted more psychological support, and 51% wanted more time with their doctor

• Patients used diverse online resources. 76% looked up information on the AECAT website, only 10% looked up Government sites, and <6% looked up information on other patient organisation sites

2. The information landscape in 2015Sources of information in Europe• National health organisations• Hospitals and clinics• Professional medical associations• Pharmaceutical industry• Patient organisations – leaflets, websites,

patient stories, videos• Internet, Facebook, Twitter, ‘Dr Google’• Peers

2. The information landscapeProfessional• National Cancer Institute• French Cancer Ligue• Cancer Research Association• Local hospitals (guidelines for radioprotection measures after

radioiodine treatment etc.)

Patient organisations• Vivre sans Thyroïde

Most patient information is « top-down » (written by specialists), but in the last few years, patient representatives have been included in review committees

Vivre sans Thyroïde 

Participation in review committees:

• Guide « Thyroid cancer  » Ligue contre le cancer (Pr Schlumberger), 2009

• Guide « ALD30 – Thyroid cancer  », HAS/INCa, 2010• Guide « Thyroid cancer  » + website www.e-cancer.fr/cancerinfo/les-cancers Institut National du Cancer, 2012• « Patient information before thyroidectomy » (SFORL),

Guide for surgeons, 2012• Guide « True/false ideas about thyroid cancer »,

Laurence Leenhardt/La lettre du cancérologue/SFE, 2014

• Patient review committee for clinical research in cancerologyLigue contre le cancer, since 2015

Information for patients: Web forum, YouTube channel, newsletter, leaflet, poster for waiting room …

2. The information landscape Professional• National institutions (DKH, DKG, HKSG)• Local hospitals• Pharmaceutical industry

Patient organisations• Bundesverband Schilddrüsenkrebs - Ohne

Schilddrüse Leben e.V.

2. The information landscape Professional• Sanitary System (national health service)*• Hospitals*• American Cancer Society (cancer.org)• Glándula Tiroides (Dr Fabian Pitoia, Argentina)

* Little written information except for radioactive protection measures and low iodine dietPatient organisations• AECAT• Others: Thyca (USA), Actira (Argentina),…

Spanish language pamphlets and flyers

AECAT internet patient-to-patient material, news, video-interviews and webinars to specialists: 1,500,000 visits last year

2. The information landscapeProfessional

• National Health Service /NHS Choices /Information Prescriptions• Society for Endocrinology• British Thyroid Association

Patient organisations• Macmillan Cancer Support*• Cancer Research UK*• British Thyroid Foundation*• Butterfly Thyroid Cancer Trust• Association for Multiple Endocrine Neoplasia Diseases (AMEND)

*NHS Information Prescriptions Partners

UK – British Thyroid Foundation, AMEND and British Thyroid Association leaflets

UK – Butterfly Thyroid Cancer Trust and Thyroid Cancer Support Group Wales videos

3. Best practice – three examples

How can doctors and patients be sure the information that patients

access is trustworthy, up to date, and “patient friendly”?

3. Best practice – British Thyroid Association thyroid cancer guidelines and patient leafletsGoal: simultaneous publication of clinical guidelines and ‘matching’ patient information (PI) leaflets. Guidelines chair: Petros Perros (Newcastle, UK)

• Patient representative on Guidelines Committee• Sub-committee of 5 patient organisation ‘leaders’ who wrote PI

leaflets• Patient leaders reviewed relevant sections of draft clinical guidelines• Clinicians reviewed draft PI leaflets and helped align these to the

guidelinesResult: guidelines and patient leaflets published together in Clinical Endocrinology, PI leaflets published on patient organisation websitesPerros et al: British Thyroid Association Guidelines for the Management of Thyroid Cancer, Clinical Endocrinology, 81, S1, 2014

3. Best practice – European Society of Endocrinology hypoparathyroidism guidelinesGoal: publish first ever guideline on treatment of chronic hypoparathyroidism (long-term complication of thyroid cancer surgery) with accompanying patient leaflet

• European patient organisations reviewed draft recommendations• Patients and clinicians collaborated on accompanying patient

leaflet

Result: guidelines launched at ESE Dublin 2015 and published in Journal of Endocrinology in May 2015, patient leaflet published on line in OctoberBollerslev et al: European Society of Endocrinology Clinical Guideline: Treatment of chronic hypoparathyroidism in adults. Clinical Endocrinology, 173 (2015)

3. Best practice – Thyroid Cancer Alliance leaflets for patients with advanced disease prescribed multikinase inhibitors (MKIs)

(work in progress)• Patient-led workshop with leading physicians to discuss

issues and develop consensus on education and support for patients offered MKI treatment (Paris, October 2014)

• Development and review of consensus document • Development and review of patient information

materials• Planned - presentation at International Thyroid

Congress, Orlando, USA, 18-22 October 2015• Planned - translations and publication on dedicated

website, January-March 2016

Conclusions Characteristics of reliable patient information

• Evidence-based, linked where possible to guidelines (BTA, ESE)• Patient-doctor partnership – patients review doctor-

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

two years)

Our shared goal

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

… which makes the doctor’s life easier, too!

Acknowledgements

We would like to thank the following who contributed to this presentation:AECAT – Carmen Villar and Cristina ChamorroOhne Schilddrüse Leben e.V. - Harald Rimmele