Vivre sans Thyroïde

Anxiety and depression in thyroid cancer:

The patients’ experience

Athens, December 5, 2015

Vivre sans Thyroïde Live without a thyroid gland (or with a thyroid disease) 

Website « made by patients, for patients » Information, exchange of experience

Discussion Forum, created in 2000, free of charge • Animated and moderated by patients• 5000 to 6000 visitors per day, > 15.000 registered users, > 120 messages per

day• List of « frequently asked questions »• Present on Facebook (page > 2000 followers, group > 2500 members),

Twitter (560 followers), Youtube (educational videos > 108.000 views)

Exchange of experience, emotional support. Reliable and comprehensible Information.Translation of medical terms

Non-profit Association Created in 2007, certified « of public interest », financed exclusively by membership fees (approx. 800 members)• Patient meetings and conferences, local groups• Cooperation with doctors and institutions (SFE, GRT, TUTHYREF network, INCa/HAS, Ligue contre le cancer …)• National and international cooperation : Alliance for Rare Diseases, CISS,

Thyroid Federation International, Thyroid Cancer Alliance• Promotion of the role of e-patients/patient experts in Health 2.0

Better knowledge and awareness of thyroid diseases Improvement of the doctor-patient relationship Patient advocacy

Vivre sans Thyroïde Live without a thyroid gland (or with a thyroid disease) 

Our aim:

Help patients to find reliable information, emotional support and to become true « e-patients » : equipped, enabled, empowered, engaged …

• well informed• able to understand their disease and its treatments and alternatives• able to participate in decisions concerning their care

"participative medicine" and better compliance

It’s a GOOD cancer! It’s CANCER …

Anxiety and depression in thyroid cancer

• Tagay et al. (2006). Health-related Quality of Life, Depression and Anxiety in Thyroid Cancer Patients. Quality of Life Research 15: 695-703

• Husson et al. (2013). Fatigue Among Short- and Long-Term Thyroid Cancer Survivors. Thyroid 23; 10: 1247-1255

• Gamper et al. (2015). Persistent quality of life impairments in differentiated thyroid cancer patients. European Journal of Nuclear Medicine and Molecular Imaging 42: 1179-1188

• Banach et al. (2010). Thyroid Cancer Alliance international patient/survivor survey: psychosocial/informational support needs, treatment side effects and international differences in care.

• Vivre sans Thyroïde (2015): Quality of life after thyroid surgery. SFE 2015.• Duntas, Maillis (2013). Hypothyroidism and depression: salient aspects of pathogenesis and

management. Minerva Endocrinologica 38: 365-377 • Brintzenhofe-Szoc et al (2009): Mixed Anxiety/Depression Symptoms in a Large Cancer Cohort:

Prevalence by Cancer Type. Psychosomatics 50: 383-391 • Mowla et al (2011). Clinical characteristics of patients with major depressive disorder with and

without hypothyroidism: a comparative study. Journal of psychiatric practice 17: 67-71 • Applewhite at al (2015). Quality of Life in Thyroid Cancer is Similar to That of Other Cancers with

Worse Survival. World Journal of Surgery. Nov 2015• Briseis Aschebrook-Kilfoy et al (2015). Risk Factors for Decreased Quality of Life in Thyroid Cancer

Survivors: Initial Findings from the North American Thyroid Cancer Survivorship Study. Thyroid (2015) in press.

Quality of life after a thyroid cancer diagnosis

• VST study on « QoL after thyroid surgery » (1329 respondents, spring 2015 – 40% cancer, 60% benign disease): QoL score 10% lower than in reference population

• HRQL distinctly reduced in DTC patients undergoing thyroid hormone withdrawal. Anxiety: considerably more frequent in DTC patients than in the general population and other cancer patient samples. Depression = strong predictor of reduced QoL.

• Depressed patients with hypothyroidism have more severe symptoms than depressed patients with normal thyroid function, which points towards a distinct impact of thyroid removal and lack of thyroid hormones on depression and anxiety.

• Short- and long-term TC survivors report higher levels of fatigue than an age- and sex-matched normative population do. Both TC-specific HRQoL and psychological distress were associated with fatigue.

• Mixed anxiety / depression symptoms are observed in more than 12% of all cancer patients – the hormonal imbalance after thyroidectomy can further worsen these problems.

• Survey of 243 thyroid cancer patients (ETA 2011): 58% reported anxiety or depression as a result of their diagnosis.

• The findings indicate that better tools to measure and improve thyroid cancer survivor QoL are needed.

• There are few studies about Quality of Life of thyroid cancer patients• Even less about anxiety and depression• Distinction is difficult: « depression » vs. « depressive syndrom »• Possible causes:

- Shock about receiving cancer diagnosis- Uncertainty about the future- Confusion: « risk of recurrence » ≠ « risk of death »- Discrepancy: "good cancer", but "life-long follow-up"?- Hormonal imbalance:

- substitutional treatment takes time to adjust (enormous impact on physical and psychological wellbeing)

- hormone withdrawal before RAI treatment …- TSH suppression: hyperthyroidism reinforces anxiety …

Dynamic risk stratification• Can alleviate patient anxiety early• Adaptation of intensity of follow-up

Diagnosis ThyroidSurgery

RAIAblation

Initial Follow-Up

OngoingFollow-Up

Pre-operative risk stratification

Risk of Recurrence

Risk of Death

Response to Therapy

ExcellentBiochemical incompleteStructural incompleteIndeterminate

Vivre sans Thyroïde : Survey “Quality of life after thyroidectomy”

Mean QoL score for the entire sample: 59

0

20

40

60

80

100Capacité physique

Limitation du rôleliées à la capacité

physique

Bien-êtreémotionnel

Limitations du rôleliées au bien-être

émotionnel

Vitalité (énergie /fatigue)

Fonctionnementsocial

Douleur physique

Etat de santégénérale

Modificationsperçues de l'état de

santé générale

Echantillon

Valeur deréférence

Except the score related to physical capacities, the quality of life of patients after thyroidectomy is lower than the QoL of the general population.

We found no difference in QoL between patients operated for cancer and those who had a benign disease.

Physical capacities

Limitations related to physical capacities

Emotional well-being

Limitations related to emotional well-being

Vitality (energy/fatigue)

Sociallife

Physicalpain

Generalstate of health

Modifications perceived in the general state of

health

Sample

Reference group

Factors influencing the Quality of Life of patients after thyroidectomy

n (%) Score MOS-SF36

p

Information received was satisfactory:

YesNo

815 (72%)315 (27%)

62,750,4

<0,001

Supportive environmentYesNo

874 (77%)256 (23%)

62,149,5

<0,001

Side effectsYesNoDon’t remember

837 (74%)217 (19%)76 (6%)

57,566,558,0

<0.001

Weight gainYesNo

727 (64%)403 (36%)

56,164,8

<0,001

The number of surgeries, the type of cancer, the radioiodine treatment and the announcement of a « good cancer » had no significative influence on the QoL scores.

A supportive environment, receiving satisfactory information, the personal experience during the treatment (including side effects) and gaining weight had a significant influence on the QoL.

It took me more than one year to get back on

track …

The 3 hormone withdrawals were the

worst periods of my life …

Having people telling me « oh, it’s only the thyroid, that’s

a good cancer » made things even

worse …

My anxiety was terrifying, some days I

couldn’t even leave the house …

The worst thing was that I « looked good », nobody

believed how bad I felt … « You are cured now, so why

aren’t you happy? »

I knew it was no « depression », but my doctor refused to adjust the hormones, « you’re in the normal range » …

I was terrified by the « cancer » diagnosis, it took me years to gain confidence in my body

again …

My wife had several withdrawals, and got so

badly depressed that she finally committed

suicide …

During all the time my TSH was suppressed, I suffered from terrible

insomnia and anxiety … and nobody could understand me …

The idea that my life « depends on a little

pill » terrifies and depresses me, I miss my thyroid and my

normal life …

I have persistent disease … and I can’t get used to

the idea that there is still cancer in my

body …

It has been several years, but I never got my "old life" 

back …

Thank you !