Report prepared on behalf of the Scottish Head and Neck Cancer Networks by the WoSCAN Information Team

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Scottish Head and Neck Cancer Networks Report of the 2011 Clinical Audit Data Presented at the National Head and Neck Cancer Education Day 26th October 2012 Report prepared on behalf of the Scottish Head and Neck Cancer Networks by the Wo Information Team Leo G. McClymont Consultant Head and Neck Surgeon NHS Highland Guy Vernham Chair Head and Neck Group John Devine Head and Neck Cancer MCN Clinical Lead Wo Carol Marshall Information Manager Wo

CONTENTS 1. INTRODUCTION 3 2. METHODOLOGY 3 3. DATA QUALITY 3 4. RESULTS AND ACTION REQUIRED 4 5. SURVIVAL ANALYSIS 13 6. CONCLUSIONS 13 ACKNOWLEDGEMENT 15 ABBREVIATIONS 16 APPENDIX I STAGE DATA 17 APPENDIX II - SURVIVAL ANALYSIS 18 Final - Published Head and Neck Cancer National Meeting Report 13/02/13 2

1. Introduction This report presents analysis results for the assessment of performance of head and neck cancer services relating to patients diagnosed across Scotland (excluding NHS Tayside and NHS Grampian) between 1 st January 2011 and 31 st December 2011. The data was presented and discussed at the National Head and Neck Cancer Meeting on the 26 th October 2012 which was attended by approximately 130 clinical, cancer network and audit staff. 2. Methodology The clinical audit data presented in this report was collected by clinical audit staff in each NHS Board in accordance with an agreed national dataset and definitions. Fully verified and signed off analysis results were submitted by each region using an agreed template, to enable national comparative analysis to be carried out by Information Services Division (ISD). Since there are currently no national standards for head and neck cancer the measures presented were based on key outcome measures developed by the West of Scotland Cancer Network (Wo) and a standardised measurability document was circulated to ensure consistent measurement across the country where possible. 3. Data Quality Quality of audit data can be assessed in the first instance by estimating the proportion of expected patients that have been identified through audit. Case ascertainment is calculated by the number of patients identified as diagnosed in a NHS Board through audit as a percentage of the incidence of cancer diagnosed in that NHS Board from Cancer Registry. An average of Cancer Registry figures from 2006 to 2010 was used to take account of annual fluctuations in incidence within NHS Boards. The number of patients diagnosed each year will naturally vary, therefore some NHS Boards may report case ascertainment above 100% and others below. Figures contained within Table 1 illustrate that case ascertainment is high indicating excellent data capture across participating Boards. Table 1: Case ascertainment by NHS Board Cancer Cases registration from audit cases* Case ascertain ment Scotland 970 947 102.5% 322 299 107.8% Lothian 200 183 109.3% Borders 16 15 103.9% Fife 74 68 109.5% Dumfries & Galloway 32 33 97.6% WO 580 587 98.8% Ayrshire 73 84 86.9% Forth Valley 48 53 90.6% Lanarkshire 101 99 102.0% Greater 294 285 103.2% Clyde 64 66 97.0% NO 68 61 111.5% Highland 68 61 111.5% Final - Published Head and Neck Cancer National Meeting Report 13/02/13 3

Data completeness rates were high although some variance was noted in the capture of staging data across the country. 4. Results and Action Required A total of 970 head and neck cancer cases were included in the national analysis. A similar case mix was observed across all three regions with the occurrence higher in males (71%) than females (29%) and more prevalent in those aged 60 years and over (67%). Some variation was evident between South East Cancer Network () and Wo in the distribution of patients across deprivation categories, with a significant proportion of patients from the west of Scotland being categorised in the most deprived group and a more even distribution between deprivation groups in patients, as illustrated in Figure 1. Deprivation data was not submitted by NHS Highland. Figure 1: Breakdown of cases by deprivation category and network 45.0% 100% 40.0% 90% 35.0% 80% 70% 30.0% 60% 25.0% 50% 20.0% 40% 15.0% 30% 10.0% 20% 5.0% 10% 0.0% 0% WOS NOSC Scotla CAN AN nd 1 - mos 48 239 0 239 2 63 137 0 137 3 73 87 0 87 4 51 65 0 65 5 - leas 63 48 0 48 Not fou 6 4 0 4 WO NO Scotland 1 - most deprived 2 3 4 5 - least deprived Not found WO NO Scotland N % N % N % N % 1 - most deprived 48 16% 239 41% 0 0% 287 32% 2 63 21% 137 24% 0 0% 200 23% 3 73 24% 87 15% 0 0% 160 18% 4 51 17% 65 11% 0 0% 116 13% 5 - least deprived 63 21% 48 8% 0 0% 111 13% Not found 6 2% 4 1% 0 0% 10 1% Total 304 100% 580 100% 0 0% 884 100% 4.1 Stage at Diagnosis Stage at diagnosis is a key prognostic and therapeutic indicator for head and neck cancer patients. TNM (Seventh Edition) was used to stage patients for the purposes of national analysis. The stage information presented in Appendix I shows some variance in staging breakdown between regions however the number of cases for many of the sub sites is very small therefore interpretation of proportions should be made with caution. Some gaps in staging data were evident, particularly in the west of Scotland data presented. The group agreed that this was most likely to relate to data capture issues rather than patients not Final - Published Head and Neck Cancer National Meeting Report 13/02/13 4

being staged. It was proposed that some of the data capture issues may result when patients are diagnosed in one NHS Board and treated in another (e.g. NHS Fife patients treated in NHS Tayside). In addition, there may be specific difficulties around capture of lip cancer staging as these patients are often discussed at a Skin Cancer Multi-disciplinary Team (MDT) meeting rather than a Head and Neck Cancer MDT. It was noted that the number of cases of nasopharynx, nasal cavity/paranasal sinuses and salivary gland cancer is very low therefore missing stage data for one or two patients significantly affects the percentage of not recorded data. Reliable stage information will be essential going forward, to ensure the appropriate inclusion of patients within the measurement of performance against specific Quality Performance Indicators (QPIs) and will be required for the purposes of survival analysis as part of the national QPI reporting process. Action required: Local clinical teams should work with audit teams to ensure local processes are in place for staging information to be documented by clinical staff and made available for collection by audit staff. Staging for oropharynx and hypopharynx should be analysed and presented separately for future analysis. 4.2 Performance Against Key Outcome Measures Results for each of the key outcome measures (KOMs) are presented in graphical format with the underlying data in tabular form. 4.2.1 KOM 1 - All patients should be discussed by a multidisciplinary team prior to definitive treatment. Figure 2: Proportion of patients discussed at MDT prior to treatment 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Lothian Borders Fife D&G Ayrshire Forth Valley Lanark-shire North South Clyde Highland % Discussed Scotland Network MDT Lothian Borders Fife D&G Ayrshire Forth Valley Lanarkshire North South Discussed Prior to treatment 165 15 63 11 55 45 87 100 157 61 52 Denominator 189 16 69 12 72 47 93 107 168 63 67 dates not recorded % 0% 0% 0% 8% 0% 0% 0% 0% 0% 0% 0% % Discussed 87% 94% 91% 92% 76% 96% 94% 93% 93% 97% 78% Network Discussed 89% 89% 89% 89% 92% 92% 92% 92% 92% 92% 78% Scotland Discussed 90% 90% 90% 90% 90% 90% 90% 90% 90% 90% 90% Clyde Highland Final - Published Head and Neck Cancer National Meeting Report 13/02/13 5

Evidence suggests that patients with cancer managed by a multi-disciplinary team have a better outcome. Discussion prior to definitive treatment decisions being made provides reassurance that patients are being managed appropriately. Figure 2 shows good performance across all NHS Boards. Discussion at the national meeting highlighted that tonsil and salivary gland cancer patients will not be discussed at MDT prior to treatment, as a pathological diagnosis is required to confirm the cancer. It is recognised that a minority of patients will have diagnosis and definitive treatment performed at the same time (often by fine needle aspiration (FNA)) and therefore it is unlikely that 100% of patients will be discussed at MDT prior to treatment. 4.2.2 KOM 2 - Patients with head and neck cancer should have a histological diagnosis. Figure 3: Proportion of patients with a histological diagnosis 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Lothian Borders Fife D&G Ayrshire Forth Valley Lanarkshire North South Clyde Highland % Histological Diagnosis Scotland Network Lothian Borders Fife D&G Ayrshire Forth Lanarkshire North South Valley Clyde Highland Histological Diagnosis 195 15 74 14 72 48 97 111 178 61 66 Cytological/Clinical Diagnosis 5 1 0 0 1 0 4 3 0 3 0 Denominator 200 16 74 14 73 48 101 116 178 64 68 Not recorded 0% 0% 0% 0% 0% 0% 0% 2% 0% 0% 1% % Histological Diagnosis 98% 94% 100% 100% 99% 100% 96% 96% 100% 95% 97% Network 98% 98% 98% 98% 98% 98% 98% 98% 98% 98% 97% Scotland 98% 98% 98% 98% 98% 98% 98% 98% 98% 98% 98% n= all patients diagnosed with H&N cancer in 2011 Figure 3 illustrates consistent performance across all NHS Boards. Discussion at the national meeting highlighted that some elderly or frail patients may not be fit for the diagnostic process and therefore depending on case mix, not all NHS Boards would achieve 100% for this measure. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 6

4.2.3 KOM 3 - Patients with head and neck cancer should undergo computerised tomography (CT) of the chest or chest x-ray prior to first treatment. Figure 4 Proportion of patients receiving CT of the chest or chest x-ray prior to first treatment 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Lothian Borders Fife D&G Ayrshire Forth Valley Lanark-shire North South Clyde Highland % CT scan prior to first treatment Scotland Network Lothian Borders Fife D&G Ayrshire Forth Lanarkshire North South Valley Clyde Highland Prior to first treatment 167 15 64 11 53 42 90 109 148 61 63 Denominator 179 16 66 12 68 44 92 113 157 63 65 Dates not recorded % 0% 0% 0% 0% 1% 0% 0% 2% 3% 0% 0% % CT scan prior to first treatment 93% 94% 97% 92% 78% 95% 98% 96% 94% 97% 97% Network 94% 94% 94% 94% 94% 94% 94% 94% 94% 94% 97% Scotland 94% 94% 94% 94% 94% 94% 94% 94% 94% 94% 94% n = All patients having CT of the chest. Figure 4 indicates lower performance for NHS Ayrshire & Arran which was highlighted in the Wo Regional Audit Report with an action for the Board to explore the reasons for this. Subsequent feedback received from NHS Ayrshire & Arran indicates valid clinical reasons for those patients who did not have chest imaging prior to treatment as they were either supportive care only (decision made at MDT) or patients receiving minor surgery e.g. laser excisions. Discussion at the national meeting highlighted that although a CT of the chest could potentially pick up small lesions which could lead to a false positive, there is value in performing a CT to determine second primaries of lung origin, or pulmonary metastases. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 7

4.2.4 KOM 4 - Patients diagnosed with head and neck cancer should be seen by a dietitian where there is a nutritional need. Figure 5 Proportion of patients seen by the dietitian 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Ayrshire Forth Valley Lanarkshire North South Clyde Highland patients seen before treatment patients seen after treatment Site Ayrshire Forth Valley Lanarkshire North South Clyde Highland patients seen before treatment 26% 74% 39% 16% 2% 0% 16% patients seen after treatment 21% 0% 35% 5% 8% 2% 60% Figure 5 illustrates wide variation between NHS Boards however it was noted that there are known audit data capture issues in the west of Scotland despite detailed records being kept by dietitians. data is not available for this measure as there is no accessible recording of patients seen by a dietitian. Discussion at the national meeting highlighted that nutritional screening is important and it was noted that the majority of patients will be screened by the Malnutrition Universal Screening Tool (MUST) and seen if appropriate before treatment. Those not at risk will be seen during treatment. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 8

4.2.5 KOM 5 - Patients receiving surgery or chemoradiation treatment to larynx, oral cavity, oropharynx or hypopharynx should be seen by a speech and language therapist pre-treatment. Figure 6 Proportion of patients receiving surgery or chemoradiation treatment to larynx, oral cavity, oropharynx or hypopharynx seen by a speech and language therapist pre-treatment 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Ayrshire Forth Valley Lanarkshire North South Clyde % Seen before treatment % seen after treatment Highland Seen by Speech Therapist Ayrshire Forth Lanarkshire North South Clyde Highland Valley Seen before treatment 15 19 19 8 0 0 5 Seen after treatment 9 0 13 1 6 0 10 Denominator 38 21 42 48 98 21 60 Not recorded 0% 10% 0% 63% 93% 62% 0% % Seen before treatment 39% 90% 45% 17% 0% 0% 8% % seen after treatment 24% 0% 31% 2% 6% 0% 17% % Network seen pre-treatment 23% 23% 23% 23% 23% 23% 8% % Scotland seen pre-treatment 20% 20% 20% 20% 20% 20% 20% Figure 6 illustrates significant variation between NHS Boards however it was noted that the data was not well recorded in a number of west of Scotland units. Additionally it was agreed that there was a resource issue in the west and the lack of capacity was currently being explored by the west of Scotland Head and Neck Cancer MCN. Discussion at the national meeting highlighted that a pragmatic approach was required to ensure speech and language therapy input for high risk groups, rather than all patients. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 9

4.2.6 KOM 6 Patients undergoing curative surgery should have complete excision of margins. Figure 7 - Status of surgical margins 100% 90% 80% 70% 60% 50% 40% 30% WONO <1mm cl 5% 15% 12% 1-5mm c 28% 29% 0% 20% >5mm cl 15% 34% 16% 10% Margin In 9% 8% 7% Uncertai 1% 2% 1% 0% Not reco 11% 7% 1% Not appl 32% 5% 62% WO NO <1mm clear Uncertain 1-5mm clear Not recorded >5mm clear Not applicable Margin Involved <1mm clear 1-5mm clear >5mm clear Margin Involved Uncertain Not recorded Not applicable Total WO NO n % n % n % 8 5% 37 15% 8 12% 42 28% 69 29% 0 0% 22 15% 82 34% 11 16% 13 9% 20 8% 5 7% 1 1% 5 2% 1 1% 16 11% 17 7% 1 1% 48 32% 9 4% 42 62% 150 100% 239 100% 68 100% The national group discussion concluded that a more appropriate title for this measure would be - Patients undergoing surgery who are treated with curative intent should have complete excision of margins. In addition it was agreed that the focus of the measure should be avoiding an involved margin and further discussion highlighted that this measure is very site specific and a further breakdown by site would be useful in future analysis. Differences were noted in the recording of neck dissection and laser excisions for this measure as some NHS Boards had included these in the Not Recorded category and others in the Not Applicable category. Action required: Neck dissection and laser excisions should be excluded from this measure in future to enable consistent measurement across NHS Boards. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 10

4.2.7 KOM 7-30 Day mortality rate following final curative head and neck cancer surgery. Figure 8 30 day mortality rate following final curative surgery 20% 18% 16% 14% 12% 10% 8% 6% 4% 2% 0% Lothian Borders Fife D&G Ayrshire Forth Valley Lanarkshire North South Clyde Highland Died <=30 days >30 days Lothian Borders Fife D&G Ayrshire Forth Lanarkshire North South Clyde Highland Valley Died <=30 days of final 1 0 2 0 1 0 0 0 1 0 0 surgey Died after 30 days 3 0 4 0 2 3 5 6 13 1 11 Denominator 98 7 40 5 36 16 34 34 112 12 64 Died <=30 days 1% 0% 5% 0% 3% 0% 0% 0% 1% 0% 0% >30 days 3% 0% 10% 0% 6% 19% 12% 18% 12% 8% 17% network <=30 2% 2% 2% 2% 1% 1% 1% 1% 1% 1% 0% network >30 5% 5% 5% 5% 12% 12% 12% 12% 12% 12% 17% Scotland <=30 days 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% 1% Scotland >30 days 10% 10% 10% 10% 10% 10% 10% 10% 10% 10% 10% Treatment related mortality is a marker of the quality and safety of the whole service provided by the MDT. Figure 8 illustrates very low 30 day mortality rates across NHS Boards. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 11

4.2.8 KOM 8-30 Day mortality rate following final radiotherapy. Figure 9 30 day mortality rate following final radiotherapy 30% 25% 20% 15% 10% 5% 0% Lothian Borders Fife D&G Ayrshire Forth Valley Lanark-shire North Died <=30 days >30 days South Clyde Highland mortality following final Lothian Borders Fife D&G Ayrshire Forth Lanarkshire North South Clyde Highland rediotherapy Valley Died <=30 days 3 1 1 0 0 0 2 2 2 0 2 Died after 30 days 11 0 8 0 1 2 7 11 17 9 2 Denominator 117 10 44 4 22 17 60 78 76 40 51 % Died <=30 days 3% 10% 2% 0% 0% 0% 3% 3% 3% 0% 4% % Died after 30 days 9% 0% 18% 0% 5% 12% 12% 14% 22% 23% 4% Network % Died <=30 days 3% 3% 3% 3% 2% 2% 2% 2% 2% 2% 4% Network % Died after 30 days 11% 11% 11% 11% 17% 17% 17% 17% 17% 17% 4% Scotland % Died <=30 days 3% 3% 3% 3% 3% 3% 3% 3% 3% 3% 3% Scotland % Died after 30 days 13% 13% 13% 13% 13% 13% 13% 13% 13% 13% 13% Discussion at the national meeting highlighted that 30 day mortality following final radiotherapy provides an indication of appropriate patient selection. Figure 9 indicates low 30 day mortality rates following final radiotherapy across all NHS Boards. It should be noted that the proportions detailed in Figure 9 for patients who died after 30 days represents those patients who had died at the point the audit data was collected, and will not necessarily represent all patients from the 2011 cohort who have died. Timescales for data collection will vary between NHS Boards. 4.2.9 KOM 9 - Gaps in radiotherapy treatment. It was noted that this information is not routinely captured through audit however data is available from the ARIA radiotherapy information system and rather than collect the information via audit, reports could be extracted each year to show the proportion of patients with treatment gaps greater than three days. The group highlighted that the focus of this measure should be on uncompensated gaps, however it was noted that this may be difficult to measure. Action required: Regional networks should consider specific requests for data to be extracted from ARIA. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 12

4.3 Additional Measures It was noted that a number of additional measures are routinely analysed in including Time from surgery to radiotherapy. Multi modality (chemoradiation) treatment offered to patients under the age of 70yrs. The group agreed that these should be considered for future national analysis if highlighted as key areas during national QPI development discussions. 5. Survival Analysis Survival analysis was carried out by ISD using Cancer Registration data, in line with a specification which was agreed by the lead clinicians in each region. The analysis has been included in Appendix II. Two year observed (Kaplan Meier) survival (all cause deaths) based on a 3 year combined period (2007-9) indicated that the following factors independently had a significant influence on patient survival: Type of tumour (grouped ICD10 codes: Oral Cavity; Larynx; Oropharynx; Hypopharynx; Nasopharynx) Age at diagnosis (incorporating selected tumour types only) Deprivation category (SIMD 2009) Co-morbidity (length of hospital stay and Charlson co-morbidity index) There was also an indication that patients resident in the west of Scotland had a significantly lower crude survival than patients resident in other networks, however further multivariate analysis (cox regression) revealed that once patient demographics and co-morbidity were taken into consideration network of residence no longer significantly predicted survival. The analysis indicated that there was no statistical difference in outcome between males and females (p=0.057). 6. Conclusions Cancer audit data underpins much of the development and service improvement work of an MCN and regular reporting of performance is fundamental to ensure the quality of care delivered to patients. The National Head and Neck Cancer Meeting provided a timely opportunity to compare results across regions in advance of QPI development. There are a number of actions identified as a consequence of this assessment of performance, several of which relate to a continued commitment to data quality improvement and consistent measurement across the country Local clinical teams should work with audit teams to ensure local processes are in place for staging information to be documented by clinical staff and made available for collection by audit staff. Staging for oropharynx and hypopharynx should be analysed and presented separately for future analysis. Neck dissection and laser excisions should be excluded from KOM 6 in future to enable consistent measurement across NHS Boards. Regional networks should consider specific requests for data to be extracted from ARIA to facilitate measurement of gaps in radiotherapy treatment. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 13

It is anticipated that the forthcoming development and implementation of QPIs for head and neck cancer will introduce more outcome focussed measurement going forward. In addition, the introduction of a nationally agreed dataset and measurability document to support the measurement of performance against QPIs will facilitate regular national comparative analysis and survival analysis as part of a rolling national QPI reporting process. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 14

Acknowledgement This report has been prepared using clinical audit data provided by the following NHS Boards: NHS Borders NHS Dumfries and Galloway NHS Fife NHS Lothian NHS Highland NHS Ayrshire & Arran NHS Forth Valley NHS Greater and Clyde NHS Lanarkshire We would like to thank cancer audit staff in all three regional cancer networks for their hard work in recording and submitting head and neck cancer data, and also the clinical leads in each network for their contribution. Thanks are also due to Sharon Kennedy and John Connor from ISD for carrying out survival analysis and collating audit results for presentation at the national meeting and inclusion in this report. Final - Published Head and Neck Cancer National Meeting Report 13/02/13 15

Abbreviations CNS Clinical Nurse Specialist CT Computerised Tomography FNA Fine Needle Aspiration ISD Information Services Division KOM Key Outcome Measure MCN Managed Clinical Network MDT Multidisciplinary Team MUST Malnutrition Universal Screening Tool NO North of Scotland Cancer Network QPI Quality Performance Indicator South East Scotland Cancer Network WHO World Health Organisation WoS West of Scotland Wo West of Scotland Cancer Network Final - Published Head and Neck Cancer National Meeting Report 13/02/13 16

Appendix I Stage Data Figure 1: Lip and Oral Cavity Stage NO WO 0 I II III IVA IVB IVC Not Recorded Inapplicable WO NO Scotland stage n % n % n % n % 0 10 11% 0 0% 0 0% 10 4% I 38 44% 29 18% 7 25% 74 27% II 13 15% 27 17% 4 14% 44 16% III 5 6% 18 11% 3 11% 26 9% IVA 17 20% 48 30% 12 43% 77 28% IVB 0 0% 1 4% 1 0% IVC 1 1% 3 2% 0 0% 4 1% Not Recorded 3 3% 34 21% 1 4% 38 14% Inapplicable 0 0% 3 2% 0 0% 3 1% Total 87 100% 162 100% 28 100% 277 100% Figure 2: Oropharynx/Hypopharynx Stage Scotland NO WO 0 I II III IVA IVB IVC Not Recorded Inapplicable WO NO Scotland stage n % n % n % n % 0 1 1% 0 0% 0 0% 1 0% I 4 4% 6 3% 0 0% 10 3% II 11 12% 25 13% 3 14% 39 13% III 10 11% 29 15% 6 29% 45 15% IVA 63 67% 101 53% 10 48% 174 57% IVB 1 1% 1 5% 2 1% IVC 1 1% 9 5% 1 5% 11 4% Not Recorded 3 3% 13 7% 0 0% 16 5% Inapplicable 0 0% 6 3% 0 0% 6 2% Total 94 100% 189 100% 21 100% 304 100% Final - Published Head and Neck Cancer National Meeting Report 13/02/13 17

Figure 3: Nasopharynx Stage NO WO 0 I II III IVA IVB IVC Not Recorded Inapplicable WO NO Scotland stage n % n % n % n % 0 0 0% 0 0% 0 0% 0 0% I 0 0% 0 0% 0 0% 0 0% II 1 20% 2 13% 1 100% 4 19% III 2 40% 5 33% 0 0% 7 33% IVA 1 20% 2 13% 0 0% 3 14% IVB 0 0% 0 0% 0 0% IVC 0 0% 0 0% 0 0% 0 0% Not Recorded 1 20% 6 40% 0 0% 7 33% Inapplicable 0 0% 0 0% 0 0% 0 0% Total 5 100% 15 100% 1 100% 21 100% Figure 4: Larynx Stage NO WONO Scotland WO 0 I II III IVA IVB IVC Not Recorded Inapplicable Larynx WO NO Scotland stage n % n % n % n % 0 7 9% 0 0% 0 0% 7 3% I 27 34% 47 30% 4 27% 78 31% II 19 24% 27 17% 5 33% 51 20% III 8 10% 25 16% 3 20% 36 14% IVA 19 24% 31 20% 1 7% 51 20% IVB 0 0% 2 13% 2 1% IVC 0 0% 2 1% 0 0% 2 1% Not Recorded 0 0% 22 14% 0 0% 22 9% Inapplicable 0 0% 4 3% 0 0% 4 2% Total 80 100% 158 100% 15 100% 253 100% Final - Published Head and Neck Cancer National Meeting Report 13/02/13 18

Figure 5: Nasal Cavity/Paranasal Sinuses Stage NO WO 0 I II III IVA IVB IVC Not Recorded Inapplicable Nasal Cavity/Paranasal Sinuses WO NO Scotland stage n % n % n % n % 0 0 0% 0 0% 0 0% 0 0% I 2 18% 3 18% 0 0% 5 17% II 0 0% 0 0% 1 100% 1 3% III 1 9% 0 0% 0 0% 1 3% IVA 4 36% 8 47% 0 0% 12 41% IVB 0 0% 0 0% 0 0% IVC 1 9% 0 0% 0 0% 1 3% Not Recorded 3 27% 4 24% 0 0% 7 24% Inapplicable 0 0% 2 12% 0 0% 2 7% Total 11 100% 17 100% 1 100% 29 100% Figure 6: Major Salivary Glands Stage NO WO 0 I II III IVA IVB IVC Not Recorded Inapplicable WO NO Scotland stage n % n % n % n % 0 1 5% 0 0% 0 0% 1 3% I 2 11% 1 6% 0 0% 3 8% II 5 26% 0 0% 0 0% 5 14% III 2 11% 1 6% 0 0% 3 8% IVA 4 21% 3 19% 2 100% 9 24% IVB 0 0% 0 0% 0 0% IVC 1 5% 0 0% 0 0% 1 3% Not Recorded 4 21% 10 63% 0 0% 14 38% Inapplicable 0 0% 1 6% 0 0% 1 3% Total 19 100% 16 100% 2 100% 37 100% Final - Published Head and Neck Cancer National Meeting Report 13/02/13 19

Appendix II - Survival Analysis Figure 1: Distribution of registration by type of tumour and deprivation categories, grouped ICD10 Head & Neck, grouped 1 - Most deprived SIMD2009 Quintile for Scotland 5 - Least 2 3 4 deprived Total Oral Cavity 288 251 173 146 134 992 29.0% 25.3% 17.4% 14.7% 13.5% 100.0% Oropharynx 198 147 130 128 85 688 28.8% 21.4% 18.9% 18.6% 12.4% 100.0% Salivary Gland 30 28 32 24 17 131 22.9% 21.4% 24.4% 18.3% 13.0% 100.0% Nasopharynx 15 14 13 10 15 67 22.4% 20.9% 19.4% 14.9% 22.4% 100.0% Hypopharynx 113 85 54 40 29 321 35.2% 26.5% 16.8% 12.5% 9.0% 100.0% Nasal Cavity and Ear 13 17 18 11 9 68 19.1% 25.0% 26.5% 16.2% 13.2% 100.0% Sinus 9 6 8 5 8 36 25.0% 16.7% 22.2% 13.9% 22.2% 100.0% Larynx 284 225 162 100 91 862 32.9% 26.1% 18.8% 11.6% 10.6% 100.0% Total 950 773 590 464 388 3165 30.0% 24.4% 18.6% 14.7% 12.3% 100.0% P=0.002 (Pearson Chi-Square) Figure 2: Observed survival (all cause deaths) by 5 main cancer groups Total No. % No. events 6-month (%) SE (%) 1-year (%) SE (%) 2-year (%) SE (%) Oral Cavity 992 33.9 451 84.7 1.1 74.2 1.4 62.6 1.5 Oropharynx 688 23.5 298 86.9 1.3 76.2 1.6 65.4 1.8 Nasopharynx 67 2.3 33 82.1 4.7 71.6 5.5 58.2 0.6 Hypopharynx 321 11.0 232 70.7 2.5 53.0 2.8 36.8 2.7 Larynx 862 29.4 345 90.5 1.0 80.4 1.4 69.7 1.6 p<0.000 (Log Rank (Mantel-Cox)) Final - Published Head and Neck Cancer National Meeting Report 13/02/13 20

Figure 3: Observed survival (all cause deaths) by patient gender Total No. % No. events 6-month (%) SE (%) 1-year (%) SE (%) 2-year (%) SE (%) Male 2204 69.6 1015 86.9 0.7 75.2 0.9 62.7 1.0 Female 961 30.4 430 83.7 102.0 73.8 1.4 63.9 1.5 p=0.057 (Log Rank (Mantel-Cox)) Figure 4: Observed survival (all cause deaths) by age at diagnosis (Oral Cavity, Oropharynx, Hypopharynx and Larynx only) Total No. % No. events 6-month (%) SE (%) 1-year (%) SE (%) 2-year (%) SE (%) 15-54 559 19.5 154 94.6 1.0 85.9 1.5 78.2 1.7 55-64 933 32.6 376 89.7 1.0 79.1 1.3 68.0 1.5 65-74 814 28.4 418 82.9 1.3 71.9 1.6 59.3 1.7 75+ 557 19.5 378 72.9 1.9 57.5 2.1 42.4 2.1 p<0.000 (Log Rank (Mantel-Cox)) Final - Published Head and Neck Cancer National Meeting Report 13/02/13 21

Figure 5: Observed survival (all cause deaths) by Co-morbidity - Length of stay/bed-days (grouped) 1 Total No. % No. events 6-month (%) SE (%) 1-year (%) SE (%) 2-year (%) SE (%) No bed-days 1779 56.2 675 90.4 0.7 80.2 0.9 70.1 1.1 1-10 bed-days 781 24.7 361 87.3 1.2 76.7 1.5 63.8 1.7 11+ bed-days 605 19.1 409 70.6 1.9 56.5 2.0 41.7 2.0 p<0.000 (Log Rank (Mantel-Cox)) 1 In the 5 years up to 6 months prior to cancer incidence. Figure 6: Observed survival (all cause deaths) by Charlson Co-morbidity Index score Total No. % No. events 6-month (%) SE (%) 1-year (%) SE (%) 2-year (%) SE (%) Null [0] 2626 83.0 1092 88.1 0.6 77.7 0.8 66.7 0.9 Mild [1] 192 6.1 122 76.0 3.1 59.4 3.5 47.4 3.6 Moderate [2] 194 6.1 117 75.3 3.1 64.9 3.4 50.0 3.6 Severe [3] 153 4.8 114 71.9 3.6 56.9 4.0 37.3 3.9 p<0.000 (Log Rank (Mantel-Cox)) Final - Published Head and Neck Cancer National Meeting Report 13/02/13 22

Figure 7: Observed survival (all cause deaths) by Deprivation categories Figure 8: Observed survival (all cause deaths) by primary cause of death Total No. % No. events 6-month (%) SE (%) 1-year (%) SE (%) 2-year (%) SE (%) Invasive head & neck cancer 968 30.6 939 66.3 1.5 41.4 1.6 16 1.2 Invasive lung cancer 86 2.7 65 96.5 2.0 81.4 4.2 60.5 5.3 Other invasive cancer type 189 6.0 171 76.7 3.1 58.2 3.6 28.6 3.3 Other condition 1 295 9.3 270 73.9 2.6 54.9 2.9 36.9 Still alive 1627 51.4 - - - - - - - 1 Includes 3 cases with unknown cause of death p<0.000 (Log Rank (Mantel-Cox)) Final - Published Head and Neck Cancer National Meeting Report 13/02/13 23

Figure 9: Observed survival (all cause deaths) by National Cancer Network Total No. % No. events 6-month (%) SE (%) 1-year (%) SE (%) 2-year (%) SE (%) NO 706 22.3 299 87.3 1.3 76.8 1.6 65.9 1.8 873 27.6 373 86.8 1.1 76.5 1.4 65.3 1.6 WO 1586 50.1 773 84.6 0.9 73.0 1.1 60.7 1.2 p=0.002 (Log Rank (Mantel-Cox)) Final - Published Head and Neck Cancer National Meeting Report 13/02/13 24

Figure 10: Hazard ratios for demographic factors included in full Cox model (model continued in next slide)** Factors no. of cases no. of deaths Hazard ratio p-value 95% CIs (Lower/Upper) agegroup: 15-44 194 25 0.48 0.001 0.32 0.73 45-54 463 97 0.72 0.007 0.57 0.92 55-64* 995 265 1.00 - - - 65-74 878 277 1.25 0.010 1.06 1.49 75-84 509 206 1.85 0.000 1.54 2.23 85+ 126 68 3.21 0.000 2.42 4.25 SIMD 2009 Quintiles for Scotland 1 - Most Deprived* 950 327 1.00 - - - 2 773 239 0.87 0.104 0.73 1.03 3 590 164 0.80 0.023 0.66 0.97 4 464 118 0.72 0.004 0.58 0.90 5 - Most Affluent 388 90 0.61 0.000 0.48 0.78 Sex Males* 2,204 663 1.00 - - - Females 961 275 0.89 0.118 0.77 1.03 '-' not applicable * Reference category Final model contains: agegroup, SIMD Quintiles for Scotland, Bed-days (grouped), Tumour Site, and interaction between agegroup & bed-days (grouped)**. Removed from final model as not significant predictor of survival **The proportional hazards assumption does not hold for these models. This may effect the size but not the direction of the hazards Continued: Hazard ratios for remaining factors included in full Cox model** Factors no. of cases no. of deaths Hazard ratio p-value 95% CIs (Lower/Upper) Co-morbidity indicator (bed-days) No bed-days* 1,779 451 1.00 - - - 1-10 bed-days 781 232 1.10 0.251 0.94 1.29 11+ bed-days 605 255 1.59 0.000 1.36 1.87 Tumour site Oral Cavity* 992 281 1.00 - - - Oropharynx 688 216 1.39 0.000 1.16 1.67 Salivary Gland 131 25 0.66 0.044 0.43 0.99 Nasopharynx 67 30 2.65 0.000 1.81 3.89 Hypopharynx 321 164 2.17 0.000 1.79 2.64 Nasal Cavity and Ear 68 6 0.31 0.005 0.14 0.70 Sinus 36 19 2.49 0.000 1.56 3.97 Larynx 862 197 0.76 0.004 0.63 0.91 Network (residence) NO 706 184 0.84 0.056 0.71 1.00 873 241 0.92 0.283 0.78 1.07 WO* 1,586 513 1.00 - - - '-' not applicable * Reference category Final model contains: agegroup, SIMD Quintiles for Scotland, Bed-days (grouped), Tumour Site, and interaction between agegroup & bed-days (grouped)**. Removed from final model as not significant predictor of survival **The proportional hazards assumption does not hold for these models. This may effect the size but not the direction of the hazards Final - Published Head and Neck Cancer National Meeting Report 13/02/13 25