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Table 1 Definitions of key time points used to calculate PFS and OS for manual data and the ICD-10 (international classification of diseases) and OPCS (Office of population censuses and surveys classification of surgical operations and procedures) codes used for diagnosis and recurrence flag events from the routine data

From: A methodology to extract outcomes from routine healthcare data for patients with locally advanced non-small cell lung cancer

Time points Definitions for manual data Definitions for routine data
Diagnosis date In order of preference [15]:  ❖ Date of first histological or cytological confirmation of malignancy. - date when specimen taken - date of receipt by pathologist - date of pathology report  ❖ Date of imaging from a CT, PET scan or other form of clinical diagnosis  ❖ Date of admission to hospital because of this malignancy.  ❖ When evaluated at an oncology out-patient clinic only: date of first consultation at out-patient clinic because of this malignancy  ❖ Date of referral HES  ❖ Date of biopsy (taken as the optimal date of diagnosis) within pre-specified time window of X weeks of treatment initiation If not available, then the earliest within a pre-specified time window of X weeks of treatment initiation: HES  ❖ First relevant ICD10 code (Additional file 4)  ❖ OPCS identifying relevant time points and proxy measures for investigation (Additional file 2) and management (Additional file 3) RTDS  ❖ Date of request on booking form consent date for secondary treatment. (This date must correspond to treatment that is also documented in the RTDS with “Category: Radical”) SACT  ❖ Start date
Recurrence date Any of the following that first positively identifies recurrent, progressive or metastatic disease:  ❖ Date of radiological scan identifying recurrence, progressive, or metastatic disease  ❖ Date of biopsy procedure confirming recurrence  ❖ Date of clinic if a clinical diagnosis of recurrence, progressive, or metastatic disease is made and no scans or biopsies undertaken The earliest within a pre-specified time window of X weeks of *secondary treatment initiation: HES  ❖ ICD10 codes for secondary malignancies (Additional file 5)  ❖ OPCS and ICD10 codes identifying relevant time points and proxy measures for recurrent, progressive or metastatic disease investigation (Additional file 6). RTDS  ❖ Date of request on booking form consent date. (This date must correspond to treatment that is also documented in the RTDS with “Category: Palliative” If there are no secondary treatment codes (Additional file 7) but there are ICD10 codes for secondary malignancies (Additional file 5), these can be used to identify recurrence dates. If there are no ICD10 codes for secondary malignancies or investigative procedures then the start date of secondary treatment can be used: HES  ❖ OPCS identifying secondary management for recurrent, progressive or metastatic disease (Additional file 7) RTDS  ❖ Start date SACT  ❖ Start date
Death date  ❖ Date of recorded death from medical notes or clinical letters  ❖ Date of recorded death on PDS
Endpoint if no recurrence or death  ❖ Last known clinical encounter with any specialty (in the hospital or community) based on clinical letters or letters of correspondence from the patient or their next of kin  ❖ Date of last HES, SACT, RTDS entry.
  1. * Secondary treatment is defined as any treatment being initiated 10 weeks following completion of primary treatment, identified using relevant codes (Additional file 7)