Outcomes in thyroid cancer: what
factors are important?
NYCRIS Regional Audit
Cathy Bennett
Information Projects Manager
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
UPDATE
• Fourth steering group meeting
• Results of the pilot study
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
AIMS AND OBJECTIVES - 1
• To publish the anonymised results of the audit in
a form which is freely accessible and to
encourage participating hospital Trusts and health
care professionals to use the findings to adopt
best practice.
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
AIMS AND OBJECTIVES - 2
• To determine whether patients diagnosed with thyroid
cancer in the Northern and Yorkshire Region in 1998
and 1999 received appropriate care, as compared with
the NCN/BAES (2000) guidelines.
• To assess the specialties, workload, and extent of
multi-disciplinary team working of clinicians who
managed thyroid cancer patients in the Northern and
Yorkshire Region in 1998 and 1999.
• To determine the outcomes of patients diagnosed with
thyroid cancer in 1998 and 1999 (Northern and
Yorkshire).
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
OVERVIEW
• Case note review of 51 patients diagnosed in 1998
• Case notes available for 35 patients
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
PATIENTS n=35
Sex Males 31% Females 69%
Age Mean 57.8 Median 63
Min 27 Max 86
Sdev 17.7
Network of First Hospital Northern 26%
Yorkshire 63%
Humber and Yorkshire Coast
6%
Tees 6%
Pathology Anaplastic 9%
Follicular 26%
Medullary 6%
Papillary 57%
Unspecified 3%
No. died 20% of which 3 were
anaplastic, 2 follicular, 1
papillary and 1 unspecified
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
Consultant 1 Specialty
GEN S
ENT S
THO S
GEN M
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
Consultant 2 Specialty
GEN S
ENT S
R/T
null
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
Consultant 3 Specialty
R/T
ENT S
null
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
REFERRAL AND TREATMENT DATES
(DAYS)
GP* to Hosp 1* Hosp 1* to Surg 1 Surg 1 to Surg 2 Surg 1 to XRT*
Count 7 28 19 13
Median 15 81 42 88
Min 1 0 3 11
Max 33 255 343 235
*registry data
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
CHALLENGE SCAN
INTERVALS (DAYS)
XRT* to First Scan First to Sec Scan Sec to Third Scan Hosp 1* to Last
Seen
Count 13 12 7 29
Median 84 98.5 119 994
Min -70 7 3 30
Max 273 863 253 1372
*registry data
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
SURGERY and PATHOLOGY
• Surgery and pathology - pathology and type
(categorise surgery), insufficient stage, grade and
pathology data in case notes.
• Initial and completion surgery - we need to categorise
these types of surgery - see new data collection form
• Very little data on size of tumour
• General revision of the data collection form for the
main study
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
COMPLICATIONS
• hypoparathyroidism - how is this defined? Is there a
test or treatment that would help to identify this
condition?
• Post -op. and long term - some data available - please
see results sheet
• Radioiodine - not recorded - may be in nursing notes?
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
LONG TERM FOLLOW-UP
• TSH level (Mu/L)
• Various values, units unclear - need an
endocrinologist!
• Some data available - see data collection form -
do we continue to collect this?
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
OUTCOMES
cause-specific death
overall disease free survival
early side effects of radioiodine treatment
distant and local recurrence
recurrent laryngeal nerve damage
hypoparathyroidism
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
OUTCOMES - Definitions
cause-specific death - death from thyroid cancer
overall disease free survival - 1 yr, 3yr, revisit at 5yr
(not case notes)
early side effects of radioiodine treatment - early?
nature of side effects?
distant and local recurrence - distant/local? How is
recurrence defined? time point?
recurrent laryngeal nerve damage - how defined?
duration?
hypoparathyroidism - how measured/defined,
temp/permananent, duration? time limits?
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
PLANS FOR THE MAIN STUDY
• Changes to data collection form
• Revised as a result of papers by Hundahl and Holzer
(2000)
• Simplified according to data available.
• Expand main study to all 1998 & 1999 patients (n~250)
• Analyses - consultant speciality, type of pathology and
surgery etc. Working group.
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
QUESTIONNAIRES
• Consultants, Oncologists and MDT
• Sample n=51 patients, all consultants in patient
pathway, plus names of clinicians referred by
colleagues
• Administration tested
• Reasonably good response rates, some data available
• Patterns of care emerging
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
CONSULTANT QUESTIONNAIRE
• All consultants in patients pathway (n=46)
• 56% response rate
• Range of general details available
• Non MDT work - 67% routinely meet with clinical and
medical oncologists in the course of their work, usually
after surgery
• Patient support is an area that may warrant further
investigation by others
• Patterns of follow up care are emerging
• Guidelines 40% BTA, 20% NCN, also local and BAES
in use
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
ONCOLOGIST QUESTIONNAIRE
• Identified from registry database, referred to by other
consultants (n=17)
• 41% response rate
• Specialism in thyroid (4), also, endocrine, breast, H&N,
gastro., lung, urol., skin, gynae.
• Links with surgeons usually after treatment
• Follow up - some differences between oncologists’
and surgeons’ responses - do we need to collect these
data from oncologists as well as surgeons?
• Guidelines - none recorded guidelines
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
MDT QUESTIONNAIRE 1
• 118 questionnaires sent out, 51% response rate
• 6 MDTs identified, in YCN, NCN, CCA but not H&YC
networks
• Analysis compares teams A-F
• Thyroid MDTs cover other endocrine, H&N, breast
• Some differences in year of first formal meetings
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
MDT QUESTIONNAIRE 2
MANAGEMENT OF PATIENTS
• Differences in meeting prospectively or after surgery,
how selection is made was not recorded
• All patients are discussed after surgery
• Formal recording of treatment plans
• Involvement of pathologists
• Communication to primary care
• Patient support is variable
• Standard protocols for follow up
• Work to guidelines
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?
QUESTIONNAIRES - MAIN
STUDY?
• Is this useful information?
• Changes to the questionnaire forms?
• Expand to all consultants in main study 1998 and 1999
patients
• Current practice - how to correlate to study patients.
– By network - which patients are being seen by MDTs or
individuals?
– Correlation of MDT vs. individual care to outcome?
• Useful analyses - Working group.
Information Projects Team March 2002
Outcomes in thyroid cancer: what
factors are important?