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THE MANAGEMENT OF PATIENTS WITH THYROID CANCER. Cathy Bennett Information Projects Manager. UPDATE. Second steering group meeting PROTOCOL development (Miss Durning, Mr England, Dr Mallick, Dr Watson + others). TO DISCUSS. Protocol under development - still some issues to resolve
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THE MANAGEMENT OF PATIENTS WITH THYROID CANCER Cathy Bennett Information Projects Manager
UPDATE • Second steering group meeting • PROTOCOL development (Miss Durning, Mr England, Dr Mallick, Dr Watson + others)
TO DISCUSS • Protocol under development - still some issues to resolve • Background • Aims and objectives • Exclusions • Patient issues? • Pathology review? • Study design and Pilot
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
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 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?
OVERVIEW • BASELINE - 1998/99 - 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
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 2001- against key features in the guidelines • Proforma - disciplined about data items collected
2. SURGICAL MANAGEMENT • Who, speciality, and workload - registry data • Questionnaire for surgeons in 1998 - Speciality and Sub-group, MDT?
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
4.1 PATIENT ISSUES: Possible Topics • Experiences of receiving I131 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
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?
5.1 PATHOLOGY: Subtypes Subtypes Lymphomas - in or out?
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?
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
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