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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.
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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
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.