Cancer Waiting Times. 1 April Adjuvant Radical External Beam Radiotherapy Definitions. Version 1.0

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Cancer Waiting Times Adjuvant Radical External Beam Radiotherapy Definitions Version 1.0 1 April 2015

Document Control Document Purpose Definitions for NHS Boards for the adjuvant radical external beam radiotherapy data submission for 2015-2016 as part of the cancer waiting times extending tumours rolling programme Title Cancer Waiting Times Adjuvant Radical External Beam Radiotherapy Definitions Author Information Services Division of NHS National Services Scotland Issue date 01 April 2015 Issue Version 1.0 Audience Circulation List Superseded Documents Regional Radiotherapy Centres and Scottish Government Policy Leads Regional Radiotherapy Centres 0.1 0.2 0.3 0.4 0.5 Updates from previous version 0.1 KH first draft 0.2 AMcK submission information 0.3 Updates after meeting 17/03/2015 0.4 Comments from IB: Cancer Type simplify ECAD update Prostate scenario 0.5 Comments from ST: Patient cancels adjustment change adjustment 1.0 Introduction updated. Numbering in section 4 corrected. Text or nominated deputy added to Sign Off. Draft removed. - 2 -

Contents Page 1 Introduction... - 4-2 Data Collection... - 4-2.1... What data is to be submitted?... - 4-2.2... Who is responsible for collating and submitting the data?... - 4-2.3... When and how should the data be reported?... - 4-3 Data Validation... - 5-3.1... Who is responsible for the accuracy and sign off of the data?... - 5-4 Submission... - 6-5 Patient Identifier... - 7-6 Cancer Type... - 7-7 Date of Previous Intervention/First Intervention Identifier... - 8-8 Radical/Palliative Identifier... - 8-9 Earliest Clinically Appropriate Date (ECAD)... - 8-10 Date of First Adjuvant Radical External Beam Radiotherapy Treatment... - 8-11 Waiting Times Adjustment... - 9-11.1 Waiting Times Adjustment Number of Days... - 9-11.2 Waiting Times Adjustment Main Reason... - 9-11.3 Adjusted Waiting Times Scenarios...- 10-11.3.1 01 - Patient Did Not Attend...- 10-11.3.2 02 - Patient Cancelled...- 11-11.3.3 03 - Patient Defers...- 11-11.3.4 04 - Temporary Co-morbidity...- 13-11.3.5 05 - Other Patient-Induced Suspension...- 14-11.3.6 06 - Medical Suspension...- 15-11.3.7 07 - No Adjustment...- 15-11.3.8 08 - Change of Medical Plan...- 15-12 Waiting Time from ECAD to Start of Treatment...- 16-13 Comments...- 16 - - 3 -

1 Introduction The extending tumours work is a rolling programme of short term audits of waiting time performance for individual tumours. The management information produced by NHS Boards is used to inform pathway improvement work. There is an increasing appetite within NHS Boards and the Scottish Government for scrutiny on waiting times for subsequent treatments and it was agreed by the ISD hosted Data and Definitions group that waits for subsequent adjuvant radical external beam radiotherapy should be the focus of the extending tumour work for 2015-2016. It is anticipated that by carrying out this snapshot work there will be a better understanding of the intelligence already within the system, the resources that are required to collect and monitor subsequent treatments, and will provide reassurances that Centres/Boards have good clinical governance procedures in place to ensure patients receive their treatment timeously. 2 Data Collection 2.1 What data is to be submitted? Cancer waiting time data on adjuvant radical external beam radiotherapy (excluding first interventions, palliative treatments and treatments for secondaries and recurrences). 2.2 Who is responsible for collating and submitting the data? Of the five radiotherapy treatment centres, Edinburgh, Glasgow, Aberdeen, Dundee and Inverness it is the Board of first adjuvant radical external beam radiotherapy treatment who is responsible for collating and submitting the data to ISD. 2.3 When and how should the data be reported? The data should be submitted to ISD in an excel file including the data items listed in section 4. No patient identifiable information should be included in the file, eg. CHI, name, date of birth. ISD information governance team have advised that ISD can collect this new information for the purpose of this audit without having to seek permission from the ISD Caldicott Guardian since the information will not include patient identifiable information. If we were to collect patient identifiable information we would need to seek permission from ISD Caldicott Guardian first and go through a privacy impact assessment process. Data is to be collected for quarter 2 (April to June) in 2015 and 2016 for comparison. Information on patients who started treatment during the quarter should be submitted to ISD (except for Tayside). Tayside are only able to provide referrals during a time period, therefore Tayside will provide referrals during (time period to be agreed) to allow ISD to select out patients who started treatment in Q2. Information for Q2 2015 should be submitted to ISD by Friday 25 September 2015. Information for Q2 2016 should be submitted to ISD by Friday 23 September 2016. - 4 -

Information should be submitted to NSS.ISDCancerWaitsNew@nhs.net. Any data or submission queries should also be sent to this email address. 3 Data Validation 3.1 Who is responsible for the accuracy and sign off of the data? The data should be signed off by NHS Board Chief Executives or waiting times executive leads (or their nominated deputy) before it is submitted to ISD. ISD will carry out sense checks on the data before analysis is carried out and will liaise with Boards on any queries. It is important the unique patient identifier (pseudoanonymised) is included in the data so ISD can use this to highlight any queries to Boards. - 5 -

4 Submission For each patient the following data needs to be submitted: Field Format Mandatory 5 Patient identifier No set format Yes 6 Cancer type 5 characters Yes 7 Date of previous intervention / first intervention identifier No set format Yes - If first treatments are included in the data submission. 8 Radical / palliative identifier No set format Yes if data other than radical is included 9 Earliest Clinically Appropriate Date DDMMYYYY Yes (ECAD) 10 Date of First Adjuvant Radical DDMMYYYY Yes External Beam Radiotherapy Treatment 11.1 Waiting times adjustment number of days (days) Number Yes if waiting time is over 31 days 11.2 Waiting times adjustment main reason 2 characters Yes if waiting time is over 31 days 12 Waiting times from ECAD to start of Number No treatment (days) 13 Comments field Text Yes if waiting time is over 31 days - 6 -

5 Patient Identifier Format: No format specified Priority: Mandatory Pseudoanonymised patient identifier to allow ISD to identify any issues or queries with the Boards. 6 Cancer Type Format: 5 characters Priority: Mandatory Include the ICD10 code in the data submission to allow ISD to select on the required codes. For information: Management Information will be monitored on the following cancer types: Breast Cervical Colorectal Head & Neck Lung Lymphoma Melanoma Ovarian Upper Gastro-Intestinal (hepato-pancreato-biliary (HPB) and oesophago-gastric (OG)) Urological (prostate, bladder, other) Management Information will not be monitored on the following cancer types: Sarcomas Mesothelioma Carcinoma in situ tumours (with the exception that patients diagnosed with breast cancer should be included) Carcinoid tumours also known as (neuro-) endocrine tumours Patients where the origin of the primary tumour cannot be determined Recurrent cancer Metastatic cancers (except melanoma where the origin of the primary lesion has never been identified) Other non-invasive tumours e.g. pta tumours All other tumour types not identified above - 7 -

7 Date of Previous Intervention/First Intervention Identifier Format: No format specified Priority: Conditional This is to allow ISD to identify first interventions if first interventions are included in the data submission. 8 Radical/Palliative Identifier Format: No format specified Priority: Conditional This is to allow ISD to identify radical interventions if interventions other to radical are included in the data submission. 9 Earliest Clinically Appropriate Date (ECAD) Format: DDMMYYYY Priority: Mandatory Earliest clinically appropriate date is the date that the patient is ready for radiotherapy as stated on the radiotherapy booking form or radiotherapy referral form. Once recorded the ECAD is never adjusted and no adjustments will be included in ECAD if known at that time e.g. if known that a patient is ready clinically to start radiotherapy treatment but has a holiday planned the period of unavailability due to the holiday will not be accounted for in the ECAD but with the appropriate waiting time adjustment. Prostate Cancer: Where a patient requires seed implantation there is a recognised recovery time required. This recovery time will be included in the ECAD as it is the date that the patient is clinically ready for radiotherapy and the patient will not be clinically ready during this recovery time. If the seed implantation is carried out later than planned for and the recovery time is then outwith the time allocated within the ECAD a waiting time adjustment may be applied if this affects the planned delivery date of treatment. Note: For Glasgow it is slightly different in that the two week seed implantation recovery is not factored into the ECAD and a waiting time adjustment is applied for the recovery period. 10 Date of First Adjuvant Radical External Beam Radiotherapy Treatment Format: DDMMYYYY Priority: Mandatory This is the date of the first fraction of adjuvant radical external beam radiotherapy (excluding first interventions, palliative treatments and treatments for secondaries and recurrences). - 8 -

11 Waiting Times Adjustment On reflection of a whole patient pathway there may be some areas of delay not attributable to Board performance. These pathways may be adjusted to discount periods of patient unavailability, for patient-induced delays and medical suspensions. It is recognised that these adjustments can be complex to record and quality assure, however consultation for first treatments showed that it is the right thing to do for measuring performance on waiting times for cancer patients, and aligns to wider waiting times principles and measurement across NHS Scotland. Consultation also concluded that there cannot be a maximum length of adjustment or maximum number of adjustments allowed. As such, a record should be taken of all adjustments in the pathway, and on completion of the pathway all adjustments added together for submission. 11.1 Waiting Times Adjustment Number of Days Format: Number Priority: Mandatory This is the cumulative number of days by which the waiting times pathway has been adjusted. This can equal 0. Note: Glasgow record days expressed as weeks. 0-3 days is recorded as 0 days and 4-7 days is recorded as 1 week. 11.2 Waiting Times Adjustment Main Reason Format: 2 characters Priority: Mandatory The main reason for the number of days adjustment is the one that contributed the longest delay, or if two are equal, the first delay that occurred. Code Description 01 Patient did not attend 02 Patient cancelled 03 Patient defers 04 Temporary co-morbidity 05 Other patient-induced suspension 06 Medical suspension 07 No adjustment 08 Change of medical plan - 9 -

11.3 Adjusted Waiting Times Scenarios In this section appointment should be taken to mean any pathway step, e.g. referral, ECAD, clinic, test, treatment. Waiting list should be taken to mean the wait to any pathway step. 11.3.1 01 - Patient Did Not Attend If a patient does not attend an appointment a waiting times adjustment can be applied. Adjustment is from DNAd appointment to the next step in the pathway. Previous step in the pathway DNA appointment Attended appointment Patient pathway Adjustment Patient does not attend Scenario 1 Patient does not attend an appointment on the 2 June and has an appointment rescheduled for 22 June.. Answer Adjustment is from the date the patient did not attend to the next step in the pathway. This can be calculated in 2 different ways: Unavailability calculation Unavailability is from 2 June to 21 June (inclusive) making it a WTA of 20 days. Or shown as: June 2010 M T W T F S S 30 1 2 3 4 5 6 7 8 9 10 11 12 13 = 20 days 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 1 2 3 4 Dates calculation Using the appointment dates this would be 22 June minus 02 June giving a WTA of 20 days. - 10 -

11.3.2 02 - Patient Cancelled A patient may have to cancel a booked appointment (this included patients who attend but could not wait). Adjustment is from the date of the cancelled appointment to the next step in the pathway. Previous step in the pathway Patient cancels appointment Original appointment New appointment Patient pathway Adjustment 11.3.3 03 - Patient Defers Patients may choose to defer the next appointment until after a holiday or until they can make arrangements for other commitments. Adjustment is the length of unavailability. Previous step in the pathway Patient unavailable Patient available Attended appointment Patient pathway Adjustment Patient Defers Scenario - 11 -

Patient has ECAD of 18 November. Whilst making an appointment to start treatment the patient advises they will be unavailable from 30 November till 15 December. An appointment is made on 18 December. Answer Adjustment is the length of unavailability. This can be calculated in 2 ways: Unavailability calculation Unavailability is from 30 November to 15 December (inclusive) making it a WTA of 16 days. Or shown as: December 2010 M T W T F S S 29 30 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 = 16 days 20 21 22 23 24 25 26 27 28 29 30 31 1 2 Dates calculation This would be 16 December minus 30 November giving a WTA of 16 days. - 12 -

11.3.4 04 - Temporary Co-morbidity The patient has or develops an illness or condition that makes the patient unfit to attend for an appointment, e.g. viral infection, neutropaenia, exacerbation of a chronic or pre-existing condition like lung disease or hypertension. Adjustment is from the date the patient is not fit to attend the appointment to the date the patient is fit to attend the appointment. Patient now fit to attend appointment Previous step in the pathway Patient unfit/ cancels/dnas original appointment New appointment Patient pathway Adjustment Temporary co-morbidity scenario A patient phones on 5 May to advise they are too ill to attend an appointment made for the 28 May and cancels. The patient advises they should be well enough by the 2 June and a new appointment is made for 4 June. Answer Adjustment is from the date the patient is unfit to attend the appointment to the date the patient is fit. It can be calculated in 2 different ways: Unavailability calculation Unavailability is from 5 May to 1 June (inclusive) making it a WTA of 28 days. Or shown as: May 2010 M T W T F S S 26 27 28 29 30 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 = 28 days 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 1 2 3 4 5 6 Dates calculation Using the appointment dates this would be 1 June minus 4 May giving a WTA of 28 days. - 13 -

11.3.5 05 - Other Patient-Induced Suspension Occasionally a patient may require a repeat appointment in their pathway, because they choose to take some time to think over their options, or because they did not follow pre-appointment instructions such as stopping a medication (e.g metformin). Adjustment is from the first appointment to the repeat appointment. Previous step in the pathway Appointment Repeat appointment Patient pathway Adjustment Other patient-induced suspension Scenario 1 11.3.6 Patient at previous appointment (15 July) with clinician was instructed to stop taking their medication 5 days before having an investigation (1 August). On day of appointment patient advised that they forgot to stop their medication. Another appointment was made on 15 August. Answer Adjustment is from the first appointment to the repeat appointment. It can be calculated in 2 different ways: Unavailability calculation Unavailability is from 1 August to 14 August (inclusive) making it a WTA of 14 days. Or shown as: August 2010 M T W T F S S 26 27 28 29 30 31 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 = 14 days 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 1 2 3 4 5 Dates calculation Using the appointment dates this would be 15 August minus 1 August giving a WTA of 14 days. - 14 -

06 - Medical Suspension Medical suspension should be used when an additional and necessary pre-treatment step is required, or when a step in the pathway has to be delayed because an unacceptable risk would be incurred if that step were to take place within a fixed time period. For example, recovery from surgery, chemotherapy, dental clearance or physiotherapy. Adjustment is from the date the patient is not fit to attend the appointment to the date the patient is fit to attend the appointment. Criteria met for patient to be fit to continue Medical decision patient not fit for next step Appointment Patient pathway Adjustment 11.3.7 07 - No Adjustment Problems resulting from hospital operational circumstances should not result in any detriment to the patient; for example, the cancellation of a clinic at short notice, appointments being cancelled or moved by the hospital, Consultants annual leave, referral delay, simulator breakdown or plan not volumed or checked in time. Therefore, waiting times adjustments cannot be made in these situations. 11.3.8 08 - Change of Medical Plan Where a patient is initially referred for one type of radiotherapy treatment which is booked but it then becomes apparent that a different radiotherapy treatment is required which requires a different booking and planning. Or where a patient is initially referred for a radiotherapy treatment that does not require an inpatient bed so it is not planned for but it becomes apparent that the patient does require a treatment that needs an inpatient bed and this has not been planned for. Adjustment equals the number of days that the starting date has to be delayed from the date the patient could have started treatment. - 15 -

12 Waiting Time from ECAD to Start of Treatment Format: Number Priority: Optional This is the number of days from ECAD to Date of First Adjuvant Radical External Beam Radiotherapy Treatment less the cumulative number of days by which the waiting times pathway has been adjusted. Note: Glasgow record days expressed as weeks. 0-3 days is recorded as 0 days and 4-7 days is recorded as 1 week. 13 Comments Format: Text Priority: Conditional Comments field is to record any additional information where waiting time is over 31 days. - 16 -