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Acromegaly: Awareness among
Health Care Practitioners
Redzuan Zarool Hassan, Marianne S ElstonHelen M Conaglen, John V Conaglen
“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
“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
“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
Valuable Insight
Reflection for learning point, what the system lacks
Although rare, acromegaly can impact livelihood significantly
Awareness is important
Background: Acromegaly
GH excess
Pituitary adenoma
Insidious
Non-specific symptoms
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
Awareness amongst Healthcare Practitioners
No reduction in delay of diagnosis 1981-2006
Under-recognition of clinical features
Reid et al. 2010
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
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
3941
1
Male Female Unidentified
64
62
6
Ethnicity n = 78NZ European Maori
Pacific Islander Asian
Demographics
Gender n =81
<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
<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
<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
<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
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)
Common Features Pre-Diagnosis
Facial feature changes 76%
Foot enlargement 82% Hand enlargement 79%
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
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
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
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
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
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
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
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?
Mass Effects of Pituitary Tumour
Headaches 54%
Sinus problems 34%
Visual disturbance 32%
Hearing loss 18%
Endocrine Disturbance
Fatigue 73% Skin tags 64% Sweating 64%
Weight gain 58 %Irregular period 54%Acne/oily skin 47%
Endocrine Disturbance
Hirsutism 36% Muscle gain 30% Hair loss 28%
Height gain 16% Impotence 14% Infertility 11%
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
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
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
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
24
2
42
12
Concern from you
Concern from fam-ily member
Concern from doctor/other health profes-sionals
Combined reasons
Who Prompted Diagnosis?
24
2
42
12
Concern from you
Concern from fam-ily member
Concern from doctor/other health profes-sionals
Combined reasons
Who Prompted Diagnosis?
Health Practitioners Seen Pre-Diagnosis
GP 91%
Dentists 42%
Eye specialists 33%
Endocrinologists 31%
Orthopaedic surgeon 24%
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
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%
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%
Study Limitations
Clinical notes not reviewed re: participant confidentiality
Cross-sectional questionnaire – subject to recall bias
S
Why is this important?
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
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
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
Awareness is Key
Simple but practical approach Handouts/publications Awareness campaigns Close relations with local acromegaly
societies Emphasis in medical curriculum
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
Acknowledgements
Participants of the study: Waikato Endocrine Clinic New Zealand Acromegaly Society
Dr Catherine Chan
Dr Marianne Elston
Dr Helen Conaglen
Prof John Conaglen
THANK YOU
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