1. March 2002 Outcomes in thyroid cancer: what factors are important? Information Projects Team Outcomes in thyroid cancer: what factors are important? NYCRIS Regional Audit Cathy Bennett Information Projects Manager

2. March 2002 Outcomes in thyroid cancer: what factors are important? Information Projects Team UPDATE Fourth steering group meeting Results of the pilot study

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

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

5. March 2002 Outcomes in thyroid cancer: what factors are important? Information Projects Team OVERVIEW Case note review of 51 patients diagnosed in 1998 Case notes available for 35 patients

6. March 2002 Outcomes in thyroid cancer: what factors are important? Information Projects Team PATIENTS n=35

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

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

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

10. March 2002 Outcomes in thyroid cancer: what factors are important? Information Projects Team REFERRAL AND TREATMENT DATES (DAYS)

11. March 2002 Outcomes in thyroid cancer: what factors are important? Information Projects Team CHALLENGE SCAN INTERVALS (DAYS)

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

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

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

15. March 2002 Outcomes in thyroid cancer: what factors are important? Information Projects Team OUTCOMES  cause-specific death  overall disease free survival  early side effects of radioiodine treatment  distant and local recurrence  recurrent laryngeal nerve damage  hypoparathyroidism

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

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

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

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

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

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

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

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