May 2001 Management of Thyroid Cancer Information Projects Team THE MANAGEMENT OF PATIENTS WITH THYROID CANCER Cathy Bennett Information Projects Manager

May 2001 Management of Thyroid Cancer Information Projects Team UPDATE Second steering group meeting PROTOCOL development (Miss Durning, Mr England, Dr Mallick, Dr Watson + others)

May 2001 Management of Thyroid Cancer Information Projects Team TO DISCUSS Protocol under development - still some issues to resolve –Background –Aims and objectives –Exclusions Patient issues? Pathology review? Study design and Pilot

May 2001 Management of Thyroid Cancer Information Projects Team KEY QUESTIONS What really makes a difference to outcome and/or the decisions made about management? What are the outcomes? –recurrence –laryngeal nerve damage, other –death

May 2001 Management of Thyroid Cancer 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.

May 2001 Management of Thyroid Cancer Information Projects Team AIMS AND OBJECTIVES - 2 To determine whether patients diagnosed with thyroid cancer in the Northern and Yorkshire Region in 1998 received appropriate care, including diagnosis and assessment, as compared with the NCN/BAES guidelines. Determine practice before the introduction of guidelines in 2000? 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 recent years. Who does surgery and who else is involved? To determine the outcomes of patients diagnosed with thyroid cancer (Northern and Yorkshire). What affects outcomes?

May 2001 Management of Thyroid Cancer Information Projects Team OVERVIEW BASELINE /99 - Assessment, diagnosis and care by case note review against key features in the guidelines and surgeon questionnaire 1998 to PRESENT - Overall patterns of management and outcomes

May 2001 Management of Thyroid Cancer Information Projects Team 1. DIAGNOSIS, PRE-TREATMENT ASSESSMENT and CARE Is it appropriate and up to guidelines standard? Case note review in 1998/99 patients - registrations are incomplete for 2000 and against key features in the guidelines Proforma - disciplined about data items collected

May 2001 Management of Thyroid Cancer Information Projects Team 2. SURGICAL MANAGEMENT Who, speciality, and workload - registry data Questionnaire for surgeons in Speciality and Sub-group, MDT?

May 2001 Management of Thyroid Cancer Information Projects Team 3. INVOLVEMENT OF OTHER HEALTH CARE PROFESSIONALS Retrospective - how can we find out who was involved - named specialist? Prospective - who is now involved in the follow up of a patient What questions would we ask? Is there a team and how is it defined? Who is in the team? How does the team work? At what point are they involved? Methodology - questionnaire, interview

May 2001 Management of Thyroid Cancer Information Projects Team 4.1 PATIENT ISSUES: Possible Topics Experiences of receiving I 131 therapy (Stajduhar et al, 2000) –care, education Experiences of thyroid hormone withdrawal for cancer recurrence evaluation (Dow et al, 1997) –QOL, use of recombinant TSH to avoid hypo Psychosocial impact of genetic testing in familial medullary TC (Freyer et al, 1999) –care, education

May 2001 Management of Thyroid Cancer Information Projects Team 4.2 PATIENT ISSUES: Methodology Identification of patients –retrospective via cancer registry (ethical problems?) –prospective in liaison with clinical nurse specialists in N & Y region –combination of above Regional study vs. single hospital –enlarge patient numbers, increase study viability Interview/postal questionnaires/QOL –expertise in NYCRIS Can we do it? Is this research?

May 2001 Management of Thyroid Cancer Information Projects Team 5.1 PATHOLOGY: Subtypes Subtypes Lymphomas - in or out?

May 2001 Management of Thyroid Cancer Information Projects Team 5.2 PATHOLOGY: Review Pathology review - advantages/disadvantages - review a subset where mis-reporting may lead to inappropriate care Who would review and how to obtain the materials –Concurrent with audit? Who would lead the process?

May 2001 Management of Thyroid Cancer Information Projects Team 6.STUDY DESIGN TITLE: FACTORS AFFECTING ADVERSE OUTCOMES IN THYROID CANCER Patients in 1998/9 Build up a detailed profile of each case: diagnosis, types, management and follow up against key features in the guidelines Outcomes –Recurrence –Death –Other Management of recurrence and other outcomes

May 2001 Management of Thyroid Cancer Information Projects Team 7. PILOT Review case notes of a sample of patients in 1998 (all hospitals) for diagnosis, assessment and care - devise proforma with protocol working group. Pilot information gathering about teams/involvement of other healthcare professionals