acromegaly: awareness among health care practitioners redzuan zarool hassan, marianne s elston helen...
TRANSCRIPT
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S
Acromegaly: Awareness among
Health Care Practitioners
Redzuan Zarool Hassan, Marianne S ElstonHelen M Conaglen, John V Conaglen
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“I suffered for 10 years at least with symptoms of acromegaly before diagnosis was made. Early diagnosis would have saved me much discomfort.”
Shared Experiences
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“I have found myself really angry at his (GP’s) dismissive attitude to a lot of my symptoms over the years…I do believe he should have diagnosed my condition earlier .”
Shared Experiences
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“I feel most let down by the ENT specialist …who didn't ask about my hands and feet, and simply diagnosed weak vocal chords and sent me to a speech therapist.”
Shared Experiences
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Valuable Insight
Reflection for learning point, what the system lacks
Although rare, acromegaly can impact livelihood significantly
Awareness is important
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Background: Acromegaly
GH excess
Pituitary adenoma
Insidious
Non-specific symptoms
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Epidemiology
Rare Incidence: 3-4 per million per year
Prevalence: 60 per million Daly et
al. 2006
Delay in diagnosis 5–10 yrs after symptom onset
Rajasoorya et al. 1994
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Awareness amongst Healthcare Practitioners
No reduction in delay of diagnosis 1981-2006
Under-recognition of clinical features
Reid et al. 2010
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Effects of Acromegaly
4 Ds: Deformity, Disease, Disability & Death
Increased mortality Uncontrolled GH excess: 10 years earlier death
Rajasoorya et al. 1994
Multiple comorbidities Heart disease, stroke, diabetes, arthritis, vision
problems, sleep apnoea
Acromegaly & Body Image study Conaglen, Elston et al. 2015
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Questionnaire Paper & online survey 2012-2014 Waikato Endocrine Clinic patients NZ Acromegaly Society members
Aim to identify: Acromegalic signs/symptoms pre-diagnosis Healthcare practitioners the patients
encountered Professional groups that missed diagnosis
Study Methods
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3941
1
Male Female Unidentified
64
62
6
Ethnicity n = 78NZ European Maori
Pacific Islander Asian
Demographics
Gender n =81
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<20 21 - 30 31 - 40 41 - 50 51 - 60 61 - 70 71 - 80 >800
5
10
15
20
25
1
4
2
16
19
22
13
2
Number (n)
Age at Data Collection
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<20 21 - 30 31 - 40 41 - 50 51 - 60 61 - 70 71 - 80 >800
5
10
15
20
25
1
4
2
16
19
22
13
2
Number (n)
Age at Data Collection
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<20 21 - 30 31 - 40 41 - 50 51 - 60 61 - 70 71 - 80 >800
5
10
15
20
25
3
9
15
22
16
11
2
0
Number (n)
Age at Diagnosis
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<20 21 - 30 31 - 40 41 - 50 51 - 60 61 - 70 71 - 80 >800
5
10
15
20
25
3
9
15
22
16
11
2
0
Number (n)
Age at Diagnosis
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Period with Symptoms before Diagnosis
<1 year 1- 5 years 5 - 10 years >10 years0
5
10
15
20
25
6
20
23
17
Number (n)
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Common Features Pre-Diagnosis
Facial feature changes 76%
Foot enlargement 82% Hand enlargement 79%
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Features Pre-Diagnosis: Acral Changes
Features n (%)
<1 year (%)
1-5 years(%)
5-10 years(%)
>10 years(%)
Foot enlargement
82 0 55 36 8
Hand enlargement
79 0 48 39 14
Glove tightness
66 0 54 29 17
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Features Pre-Diagnosis: Acral Changes
Features n (%)
<1 year (%)
1-5 years(%)
5-10 years(%)
>10 years(%)
Foot enlargement
82 0 55 36 8
Hand enlargement
79 0 48 39 14
Glove tightness
66 0 54 29 17
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Features Pre-Diagnosis: Acral Changes
Features n (%)
<1 year (%)
1-5 years(%)
5-10 years(%)
>10 years(%)
Foot enlargement
82 0 55 36 8
Hand enlargement
79 0 48 39 14
Glove tightness
66 0 54 29 17
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Features Pre-Diagnosis: Orofacial Changes
Features n (%)
<1 year (%)
1-5 years(%)
5-10 years (%)
>10 years (%)
Facial feature changes
79 6 62 18 15
Jaw/forehead enlargement
58 8 52 24 16
Tongue size increase
51 8 64 20 8
Bite change 50 7 53 20 20
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Features Pre-Diagnosis: Orofacial Changes
Features n (%)
<1 year (%)
1-5 years(%)
5-10 years (%)
>10 years (%)
Facial feature changes
79 6 62 18 15
Jaw/forehead enlargement
58 8 52 24 16
Tongue size increase
51 8 64 20 8
Bite change 50 7 53 20 20
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Features Pre-Diagnosis: Orofacial Changes
Features n (%)
<1 year (%)
1-5 years(%)
5-10 years (%)
>10 years (%)
Facial feature changes
79 6 62 18 15
Jaw/forehead enlargement
58 8 52 24 16
Tongue size increase
51 8 64 20 8
Bite change 50 7 53 20 20
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Symptoms Prompting Diagnosis:
Noticed by Self vs. Others
Facial changes Hands and/or feet changes
Changes in Both
0
2
4
6
8
10
12
1
9
6
4
10
7
Noticed by Self
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Questions Arising from Study
Are facial feature changes more obvious than acral changes, therefore, noticed earlier?
Are facial feature changes less tolerable than acral changes?
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Mass Effects of Pituitary Tumour
Headaches 54%
Sinus problems 34%
Visual disturbance 32%
Hearing loss 18%
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Endocrine Disturbance
Fatigue 73% Skin tags 64% Sweating 64%
Weight gain 58 %Irregular period 54%Acne/oily skin 47%
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Endocrine Disturbance
Hirsutism 36% Muscle gain 30% Hair loss 28%
Height gain 16% Impotence 14% Infertility 11%
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Co-morbidities
Co-morbidity %Arthritis 50
Bowel polyps/cancer 43
High blood pressure 42
High cholesterol 41
Obsructive sleep apnoea 35
Diabetes/impaired glucose tolerance 29
Thyroid problems 28
Carpal tunnel syndrome 23
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Co-morbidities
Co-morbidity %Arthritis 50
Bowel polyps/cancer 43
High blood pressure 42
High cholesterol 41
Obsructive sleep apnoea 35
Diabetes/impaired glucose tolerance 29
Thyroid problems 28
Carpal tunnel syndrome 23
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Co-morbidities
Co-morbidity %Arthritis 50
Bowel polyps/cancer 43
High blood pressure 42
High cholesterol 41
Obsructive sleep apnoea 35
Diabetes/impaired glucose tolerance 29
Thyroid problems 28
Carpal tunnel syndrome 23
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Co-morbidities
Co-morbidity %Arthritis 50
Bowel polyps/cancer 43
High blood pressure 42
High cholesterol 41
Obsructive sleep apnoea 35
Diabetes/impaired glucose tolerance 29
Thyroid problems 28
Carpal tunnel syndrome 23
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24
2
42
12
Concern from you
Concern from fam-ily member
Concern from doctor/other health profes-sionals
Combined reasons
Who Prompted Diagnosis?
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24
2
42
12
Concern from you
Concern from fam-ily member
Concern from doctor/other health profes-sionals
Combined reasons
Who Prompted Diagnosis?
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Health Practitioners Seen Pre-Diagnosis
GP 91%
Dentists 42%
Eye specialists 33%
Endocrinologists 31%
Orthopaedic surgeon 24%
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Health Practitioners Seen Pre-Diagnosis
Cardiologist 17%
Sleep/respiratory specialist 14%
Gynaecologist 6.2%
ENT specialist 3.8%
Gastroenterologist 3.8%
Diabetologist 3.5%
General surgeon n=2
Dermatologist n=1
Neurologist n=1
Neurosurgeon n=1
Oncologist n=1
Psychiatrist n=1
Rheumatologist n=1
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Who Made the Diagnosis?Group %
Endocrinologist 29
GP (incl. 2 locums)
24
ENT surgeon 5
Ortho surgeon 5
Neurologist 3
Sleep specialist 3
Other 5
31% saw endocrinologist, 29% diagnosed by endocrinologist
91% saw GPs, 24% diagnosed by GP
Can’t evaluate GP’s effort
Diagnosis by locum GP
NOTE: only included >1%
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Who Made the Diagnosis?Group %
Endocrinologist 29
GP (incl. 2 locums)
24
ENT surgeon 5
Ortho surgeon 5
Neurologist 3
Sleep specialist 3
Other 5
31% saw endocrinologist, 29% diagnosed by endocrinologist
91% saw GPs, 24% diagnosed by GP
Can’t evaluate GP’s effort
Diagnosis by locum GP
NOTE: only included >1%
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Study Limitations
Clinical notes not reviewed re: participant confidentiality
Cross-sectional questionnaire – subject to recall bias
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S
Why is this important?
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Importance of Early Recognition
GH level normalisation reduces overall mortality risk Holdaway et al. 2008
Appropriate early treatment Prevent progression of disease
Improve quality of life
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Population screening using IGF-1 (DETECT Study, 2008) N = 6773 Only 1.85% with elevated IGF-1 Weakness: uneconomical and unnecessary
routing testing increasing patient anxiety
Notable Methods of Early Recognition
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Computerized face detection (Miller et al., 2011) Higher accuracy of
detection (Schneider et al., 2011)
Difficult to apply in GP/dental practices
Notable Methods of Early Recognition
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Awareness is Key
Simple but practical approach Handouts/publications Awareness campaigns Close relations with local acromegaly
societies Emphasis in medical curriculum
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In Summary
Delayed diagnosis for many years
Acral & orofacial features: most common
Shorter duration between onset of orofacial symptoms and diagnosis
Multiple comorbidities
Better awareness needed Especially primary healthcare
practitioners
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Acknowledgements
Participants of the study: Waikato Endocrine Clinic New Zealand Acromegaly Society
Dr Catherine Chan
Dr Marianne Elston
Dr Helen Conaglen
Prof John Conaglen
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THANK YOU