march 2002 outcomes in thyroid cancer: what factors are important? information projects team...

Information Projects Team March 2002Outcomes in thyroid cancer: what factors are important?

Outcomes in thyroid cancer: what factors are important?

NYCRIS Regional Audit

Cathy Bennett

Information Projects Manager


UPDATE

• Fourth steering group meeting• Results of the pilot study


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.


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).


OVERVIEW

• Case note review of 51 patients diagnosed in 1998• Case notes available for 35 patients


PATIENTS n=35Sex Males 31% Females 69%Age Mean 57.8 Median 63

Min 27 Max 86Sdev 17.7

Network of First Hospital Northern 26%Yorkshire 63%Humber and Yorkshire Coast6%Tees 6%

Pathology Anaplastic 9%Follicular 26%Medullary 6%Papillary 57%Unspecified 3%

No. died 20% of which 3 wereanaplastic, 2 follicular, 1papillary and 1 unspecified


Consultant 1 Specialty

GEN S

ENT S

THO S

GEN M



GEN S

ENT S

R/T

null



R/T

ENT S

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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 13Median 15 81 42 88Min 1 0 3 11Max 33 255 343 235

*registry data


CHALLENGE SCAN INTERVALS (DAYS)

XRT* to First Scan First to Sec Scan Sec to Third Scan Hosp 1* to LastSeen

Count 13 12 7 29Median 84 98.5 119 994Min -70 7 3 30Max 273 863 253 1372

*registry data


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


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?


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?


OUTCOMES

cause-specific death overall disease free survival early side effects of radioiodine treatment distant and local recurrence recurrent laryngeal nerve damage hypoparathyroidism


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?


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.


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


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


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


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


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


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.

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