UK Registry of Endocrine and Thyroid Surgery

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Guide to Data Entry/FAQ's.

Welcome to the UK Registry of Endocrine and Thyroid Surgery, operated by the BAETS.

Data fields have been designed to be as self-explanatory as possible, with options available as tick-boxes or from drop-down menus.

This Guide provides advice on data completion, particularly on those areas that have previously led to enquires on interpretation; plus introduces certain changes to the database, made in early 2014.

Entering New Patients

The Registry has been designed to assess outcomes of individual procedures, therefore a new entry should be made for each separate operation, accepting that some patients may generate more than one entry at separate time intervals.

True Duplicate entries (same demographics, hospital, endocrine case type and date) will not be permitted. However, it is possible for a single patient to require two entries for separate endocrine procedures on one day e.g. during parathyroidectomy, thyroid surgery may be simultaneously carried out for co-existent thyroid pathology.

After clicking on 'Add New Patient', the Patient Demographics page will be entered. Care should be taken to ensure that all information is entered accurately at this stage, as it cannot be easily amended thereafter. All data fields must be completed in order to progress further (enabling the 'Enter Registry Data' button).

'Dual-operated Case' refers to two Consultants operating together (supervision of a trainee is covered by later data fields), and has been introduced to prevent inappropriate creation of duplicate entries. The name and GMC number of the second surgeon should be selected from the drop-down list. The second surgeon, if a registered BAETS member, should not themselves register an entry, but will have a 'read-only' record created within their patient list. These patients will be included in any analyses of both surgeons' case-loads and outcomes.

The hospital at which the surgery has been carried out must be entered, again to help prevent inadvertent duplicate entries. A list of hospitals at which you operate will be generated from information you provide at registration, and available from a drop-down menu. Please contact Dendrite or the Audit Lead if you need this list to be amended.

Once the patient demographics have been confirmed, subsequent pages relate to the specific type of operation (thyroid, parathyroid, adrenal, pancreas). Within these pages, certain fields are mandatory, and must be completed before being able to progress further/navigate away from the relevant page. Such fields are marked with a red dot. It is preferable, however, for data entry to be as complete as possible, as this enhances the usefulness of future analyses and the ability to risk-adjust surgeons' outcomes.

Interpretation of Data Fields:

1. THYROID

A. Pre-operative Details:

'Thyroid status at presentation' refers to the state of thyroid function at first presentation of the case, rather than immediate pre-operative status. For instance, thyrotoxic patients will be rendered euthyroid with anti-thyroid drugs prior to surgery, but should have this field completed as 'Hyperthyroid'.

'Goitre Type' refers to the presence or absence of any retro-sternal component.

'Re-operation' refers to any previous relevant surgery in the central compartment, principally previous thyroid surgery.

Clicking 'yes' enables secondary questions 'same side as previous operation' and 'number of previous operations'.

(The commonest scenario for re-operative surgery is contra-lateral lobectomy after a primary diagnostic lobectomy showing cancer, which would be entered as:

B. Thyroid Surgery Procedure

'Side of Thyroid Procedure':

C. Primary/Secondary Thyroid Pathology

Primary pathology refers to the disease process leading to the need for surgery.

If more than one type of pathology exists, the 'multiple' option should be selected, and secondary pathology may then be entered on the next page. This may include, for instance, co-incidental papillary cancer discovered in a thyroidectomy performed for benign disease.

Separate TNM staging data may be entered if two separate cancer types are present in the same specimen e.g. co-existent PTC and FTC.

Multi-focal cancer of one subtype should be entered as a single pathology.

No options exist for tertiary pathology, therefore some discretion must be applied if three or more pathologies co-exist.

Overall TNM stage (v7) is auto-calculated from the individual T,N and M categories, age and tumour type.

D. Thyroid Surgery Discharge Details

A pop-up dialogue box provides the definition for hypocalcaemia to be applied.

'Prophylactic' use of calcium and/or vitamin D may be identified by:

In-hospital Death must be double confirmed, via an automatic 'rare event' loop.

Patient survival status must be entered before Follow-up Fields are enabled.

E. Thyroid Follow-up

Follow-up fields have been updated (early 2014), and changes include:

Introduction of a 'lost to follow-up' field (for rare patients for whom no follow-up has occurred beyond the index admission).

Date of vocal cord check is now that of the first post-operative laryngeal examination.

Introduction of fields to clarify:

These fields are enabled only if 'vocal cord check' is recorded as abnormal.

'Related re-admission' refers to unplanned re-admission, usually due to early complications of surgery. Planned re-admission e.g. for completion thyroidectomy, should be excluded.

Use of calcium/Vit D at 6 months refers to patients requiring supplements to avoid hypocalcaemia. Patients who were on supplements pre-operatively for e.g. osteoporosis or pre-existing vitamin D deficiency may be excluded, unless their requirements remain increased post-op, in order to treat or avoid hypocalcaemia.

6 month outcome fields for vocal cord function and calcium/vitamin D may be completed prior to 6 months follow-up, if the outcome is known earlier e.g. patients whose calcium remained normal without supplements until their first out-patient visit, or where recovery of parathyroid/vocal cord function is documented prior to 6 months. Otherwise, it is recommended to leave this field blank until 6 months follow-up has elapsed, when final outcome should be entered.

2. PARATHYROID

A. Pre-operative Parathyroid Details.

Primary and Renal Hyperparathyroidism are mutually exclusive.

B. Parathyroid Procedure.

Negative exploration may be denoted by 'number of glands removed' = 0

'Targeted approach' is not tightly defined, but principally should include all focused procedures aimed at excision of a single parathyroid adenoma identified on imaging (in contrast to bilateral exploration, which is not targeted, by definition).

C. Parathyroid Discharge Details.

As for Thyroid.

D. Parathyroid Follow-up.

'Persisting hypercalcaemia' is hypercalcaemia which persists or recurs within 6 months of surgery.

Other data fields are as for Thyroid.

3. ADRENAL

Fields are largely self-explanatory, and few enquiries have previously arisen.

Adrenal Follow-up: 'Lost to follow-up' and 'related re-admission' as for Thyroid.

4. PANCREAS

Fields are largely self-explanatory, and few enquiries have previously arisen.