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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 GOODcancer! 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
Thyroid
Surgery
RAI
Ablation
Initial
Follow-Up
Ongoing
Follow-Up
Pre-operative
risk stratification
Risk of Recurrence
Risk of Death Response to Therapy
Excellent
Biochemical incomplete
Structural incomplete
Indeterminate
Vivre sans Thyroïde : Survey “Quality of life after thyroidectomy”
Mean QoL score for the entire sample: 59
0
20
40
60
80
100
Capacité physique
Limitation du rôle
liées à la capacité
physique
Bien-être
émotionnel
Limitations du rôle
liées aubien-être
émotionnel
Vitalité (énergie /
fatigue)
Fonctionnement
social
Douleur physique
Etat de santé
générale
Modifications
perçues de l'étatde
santé générale
Echantillon
Valeur de
référence
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)
Social
life
Physical
pain
General
state 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:
Yes
No
815 (72%)
315 (27%)
62,7
50,4
<0,001
Supportive environment
Yes
No
874 (77%)
256 (23%)
62,1
49,5
<0,001
Side effects
Yes
No
Don’t remember
837 (74%)
217 (19%)
76 (6%)
57,5
66,5
58,0
<0.001
Weight gain
Yes
No
727 (64%)
403 (36%)
56,1
64,8
<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 !

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Vst athens 2015 thyroid cancer and depression

  • 1. Vivre sans Thyroïde Anxiety and depression in thyroid cancer: The patients’ experience Athens, December 5, 2015
  • 2. 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
  • 3. 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)
  • 4. 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 GOODcancer! It’s CANCER…
  • 5. Anxiety and depression in thyroid cancer
  • 6. • 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.
  • 7. 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.
  • 8. • 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 …
  • 9. Dynamic risk stratification • Can alleviate patient anxiety early • Adaptation of intensity of follow-up Diagnosis Thyroid Surgery RAI Ablation Initial Follow-Up Ongoing Follow-Up Pre-operative risk stratification Risk of Recurrence Risk of Death Response to Therapy Excellent Biochemical incomplete Structural incomplete Indeterminate
  • 10. Vivre sans Thyroïde : Survey “Quality of life after thyroidectomy” Mean QoL score for the entire sample: 59 0 20 40 60 80 100 Capacité physique Limitation du rôle liées à la capacité physique Bien-être émotionnel Limitations du rôle liées aubien-être émotionnel Vitalité (énergie / fatigue) Fonctionnement social Douleur physique Etat de santé générale Modifications perçues de l'étatde santé générale Echantillon Valeur de référence 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) Social life Physical pain General state of health Modifications perceived in the general state of health Sample Reference group
  • 11. Factors influencing the Quality of Life of patients after thyroidectomy n (%) Score MOS- SF36 p Information received was satisfactory: Yes No 815 (72%) 315 (27%) 62,7 50,4 <0,001 Supportive environment Yes No 874 (77%) 256 (23%) 62,1 49,5 <0,001 Side effects Yes No Don’t remember 837 (74%) 217 (19%) 76 (6%) 57,5 66,5 58,0 <0.001 Weight gain Yes No 727 (64%) 403 (36%) 56,1 64,8 <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.
  • 12. 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 …