Cancer in Primary Care

Transcription

1 Reprt fr the Natinal Awareness and Early Diagnsis Initiative Cancer in Primary Care AN ANALYSIS OF SIGNIFICANT EVENT AUDITS (SEA) FOR CANCER DIAGNOSIS: Mitchell E, Macled U, Rubin G July 2009

2 CONTENTS 1. EXECUTIVE SUMMARY KEY MESSAGES GENERAL MESSAGES MESSAGES RELEVANT TO LUNG CANCER MESSAGES RELEVANT TO TYA CANCERS BACKGROUND AIMS AND OBJECTIVES METHODOLOGY ETHICAL CONSIDERATIONS STUDY SETTING DATA COLLECTION DATA ANALYSIS RESEARCH FINDINGS PARTICIPATING PRACTICES AND SIGNIFICANT EVENTS INSIGHTS INTO THE REFERRAL PROCESS FOR LUNG CANCER Initial symptm(s) n presentatin GP respnse t presentatin The ccurrence f c-mrbidity Time t referral Understanding referrals ccurring mre than ne mnth after presentatin Chest r malignancy related symptm presentatin Opprtunities fr earlier diagnsis f lung cancer invlving chest symptms Nn-chest r malignancy symptm presentatin Case studies f exemplary practice in lung cancer diagnsis LEARNING POINTS RELATED TO DIAGNOSIS OF LUNG CANCER Presentatin and diagnsis f lung cancer System issues and the primary/secndary care interface Patient related factrs Practitiner issues The rle f guidelines INSIGHTS INTO THE REFERRAL PROCESS FOR TYA CANCERS Page 1

3 6.4.1 Initial symptm(s) n presentatin GP respnse t presentatin Time t referral Understanding referrals fr cancer in teenagers in yung adults Presentatin related t haematlgical malignancies Presentatin related t sarcmas and bne tumurs Presentatin related t brain and nervus system tumurs Presentatin related t testicular cancer Presentatin related melanma LEARNING POINTS RELATED TO DIAGNOSIS OF TYA CANCERS Presentatin and diagnsis f cancer in yung peple System issues and the primary/secndary care interface Patient related factrs Practitiner issues The rle f guidelines PRACTICE BASED CHANGES FOR LUNG AND TYA CANCERS Changes at the cnsultatin level Changes at the practice level Changes at the level f the cancer netwrk DISCUSSION REFERENCES GLOSSARY TABLES AND FIGURES... Table 1. Characteristics f participating practices Table 2. Characteristics f included patients by cancer type Table 3. Time t referral fr lung cancer Table 4. Number f cnsultatins prir t referral fr lung cancer Table 5. Number f cnsultatins prir t referral fr cancers in teenagers and yung adults Table 6. Time t referral fr cancers in teenagers and yung adults by cancer grup Figure 1. Time t referral/acute admissin fr all lung cancers Figure 2. Time t referral/acute admissin fr presentatin with respiratry symptms Figure 3. Time t referral/acute admissin fr presentatin with nn-respiratry symptms Page 2

4 Figure 4. Time t referral/acute admissin fr cancers in teenagers and yung adults APPENDICES... A. CANCER DIAGNOSIS SIGNIFICANT EVENT AUDIT 2009 REPORT TEMPLATE B. LUNG CANCER INTERPRETIVE MATRIX FOR PROCESS OF REFERRAL C. TYA CANCERS INTERPRETIVE MATRIX FOR PROCESS OF REFERRAL D. LUNG CANCER PRESENTATIONS RESULTING IN REFERRAL >1 MONTH AFTER INITIAL CONSULTATION (CHEST SYMPTOMS) E. LUNG CANCER PRESENTATIONS RESULTING IN REFERRAL >1 MONTH AFTER INITIAL CONSULTATION (NON-CHEST SYMPTOMS) Page 3

5 PROJECT TEAM Dr Elizabeth Mitchell Senir Research Fellw Centre fr Primary Care and Ppulatin Research, University f Dundee Hnrary Research Fellw General Practice and Primary Care, University f Glasgw l.mitchell@cpse.dundee.ac.uk / l.mitchell@clinmed.gla.ac.uk Dr Una Macled Senir Lecturer in General Practice General Practice and Primary Care, University f Glasgw u.macled@clinmed.gla.ac.uk Prfessr Greg Rubin Prfessr f General Practice and Primary Care Centre fr Integrated Health Research, University f Durham g.p.rubin@durham.ac.uk This wrk was funded by the Department f Health Natinal Cancer Actin Team and the Nrth f England Cancer Netwrk. We wuld like t thank the general practices that participated in this research, as well as the lcal NHS Cancer Leads and Clinical Directrs f the Primary Care Trusts. In additin we wuld like t thank clleagues at the Nrth f England Cancer Netwrk, in particular Bill Richardsn wh managed the prject n their behalf. Page 4

6 1. EXECUTIVE SUMMARY Backgrund The principal methd f identificatin f cancer in the UK is symptmatic presentatin, usually t general practitiners (GPs), wh as a result f their gate-keeping rle within the NHS are the usual surce f referral t secndary care. As part f the Natinal Awareness and Early Diagnsis Initiative (NAEDI) t prmte timely diagnsis f cancer, a natinal audit f cancer diagnsis in primary care has been cmmissined. This incrprates the cnduct and evaluatin f Significant Event Audits (SEA) fr cancer, and the results f that wrk are presented in this reprt. Aim and methds The main aim f this study was t gain insights int the events that surrund the diagnstic prcess fr tw grups f cancers (lung cancer and cancers affecting teenagers and yung adults), drawn frm secndary analysis f SEA dcuments. General practices in tw NHS areas in the nrth east f England were invited t participate. They were asked t identify the last patient in the practice diagnsed with lung cancer, and the last patient diagnsed with cancer as a teenager r yung adult (i.e. aged 15 25), even if that patient may nw be deceased. They were prvided with an electrnic template n which t dcument their SEA based n the structure recmmended by the Natinal Patient Safety Agency. The accunts in these dcuments were synthesised and a qualitative apprach t analysis adpted. An interpretative matrix was develped fr each cancer grup, based n a mdified framewrk apprach. Relevant data frm each SEA were incrprated int a thematic chart as a means f facilitating the identificatin and interpretatin f bth cmmn and diverse aspects related t presenting features and pathways f care fr each cancer. In additin, cmparisns were made n the reflectins prvided by practices in relatin t the prcess f diagnsis, what happened in each case, and why it happened. Findings SEA reprts were returned fr a ttal f 132 lung cancer diagnses and 35 diagnses related t cancers in teenagers and yung adults. Practices in general engaged well with the prcess and prvided high quality SEA reprts. Interpretatin f these accunts demnstrated the cmplexity f the prcess f diagnsis in general practice. The majrity f SEAs studied demnstrated apprpriate recgnitin and referral fr bth cancer grups. Where the prcess f recgnitin had taken lnger there were ften reasnable explanatins fr this. Fr lung cancer these related t CXRs reprted as nrmal r with findings cnsistent with benign disease, patient factrs, such as time t re-presentatin r declining earlier referral, and presentatin cmplicated by c-mrbidity r presenting cmplaint. Fr TYA cancers, lnger times t referral were related t very unusual presentatins in extremely rare cancers. Sme pprtunities fr earlier diagnsis were als identified. Learning pints identified by practices centred n the themes f a) presentatin and diagnsis f cancer, b) system issues and the primary/secndary care interface, c) patient related factrs, d) practitiner issues, and e) the rle f guidelines. Page 5

7 Cnclusin Secndary analysis f SEA reprts is a nvel apprach t investigating recgnitin and referral f cancer and ne that has cnsiderable value in relatin t understanding the circumstances surrunding diagnsis and referral fr cancer symptms in primary care. Useful insights int this prcess have been identified, resulting in the generatin f recmmendatins fr practice. In additin, the prcess f cmpleting SEAs has facilitated practice identificatin f relevant learning pints, with assciated changes t practice. A particular benefit f the SEA prcess fr this prject has been its ptential impact n imprving clinical practice, nt least in relatin t re-review f referral guidelines and pathways. Page 6

8 2. KEY MESSAGES 2.1 GENERAL MESSAGES Secndary analysis f SEAs in this way has prvided valuable insights int recgnitin and referral f cancer within primary care. Engaging in the prcess f SEA cmpletin prvided practices with an pprtunity t re-cnsider cancer referral guidelines and the 2WW rule. The recgnitin and referral prcess dcumented in the majrity f SEAs frm bth cancer grups was apprpriate. Presentatin, bth fr lung cancer and fr TYA cancers, is cmplex. Safety-netting is imprtant. The cmmn lessn acrss these different cancer grups was the need fr practices t have mechanisms in place t fllw-up, manage and refer nn-reslving symptms. In sme cases, it might be apprpriate t cnsider arranging specific fllw up by giving an appintment time rather than advice t cme back if a symptm des nt imprve. It is imprtant t have systems in place within practice t deal with abnrmal results. It is imprtant t cnsider the recent histry f presentatins, even if the patient presents symptms as pertaining t separate episdes. It is imprtant t have cntinuity f care within practice where pssible; and if nt, t ensure that cnsultatins are linked by the reviewing practitiner. It is imprtant fr GPs t maintain an verall view f presentatins and symptms, even if specialist teams are invlved. It is imprtant t understand the prcess f reflectin. While the majrity f practitiners returned high quality reprts demnstrating a great deal f reflectin n the case (hw it reflected care fr cancer patients in their practice), and went n t cnsider and implement changes t practice where it was warranted, there did appear t be sme need t understand the prcess f reflectin mre fully. 2.2 MESSAGES RELEVANT TO LUNG CANCER Differentiating new, ptentially malignant symptms in patients with knwn chest disease can be difficult. Lung cancer shuld be cnsidered in the differential diagnsis f shulder and neck pain, particularly in at-risk grups. There is scpe fr educatin f patients at particular risk f lung cancer, in rder t encurage earlier presentatin with nging and new chest symptms. C-existing disease may mask the symptms f malignancy. There is a need fr clearer guidance regarding the rle f CXR in COPD assessment, and the rle f CXR in lng term cnditin reviews fr knwn smkers. It is imprtant t have apprpriate safety-netting and t implement fllw-up plans with patients, even if they are presenting with their first recent infective episde. Page 7

9 Greater understanding f thse patients with the mst cmmn presenting symptmatlgy (cugh; prductive cugh; ther symptms suggestive f infectin) may be where mst culd be learned t ensure apprpriate recgnitin and referral fr ptential lung cancer patients. Negative CXRs r CXRs reprted with a benign explanatin fr the appearance d nt exclude the diagnsis f cancer. Such patients shuld be referred in the cntext f nn-reslving symptms. The apprpriateness f recmmendatins related t the time at which CXR is carried ut in smkers wh have chest infectin symptms needs t be cnsidered. This is currently based n pragmatic recmmendatins, and these require investigatin, prbably in the cntext f a trial f different mdels f interventin. 2.3 MESSAGES RELEVANT TO TYA CANCERS Cancer in teenagers and yung adults presents in many different ways. As is well knwn, these are all very rare in the experience f an individual GP and diagnsing cancer in lw risk age grups is difficult. There is particular cmplexity arund presentatin f bne tumurs and sarcmas, and practitiners need t be aware f the nn-reslving alleged sprts injury. It is imprtant t have an apprpriate cnsulting style that wuld allw yung peple t feel cmfrtable enugh t explain their symptms. It may be apprpriate t cnsider primary care fllw-up f musculskeletal pain thught t be injury related. The reasn fr nging musculskeletal pain shuld be identified, particularly if it is f a lng duratin. All neck and axilla lumps shuld be referred under the 2WW rule unless there is an bvius infective cause, in which case the patient shuld be reviewed. Careful cnsideratin shuld be given t unusual presentatins by teenagers and yung adults, and referrals made if the diagnsis is nt clear. Page 8

10 3. BACKGROUND Cancer is a majr glbal health prblem, and ne that accunts fr mre than ne in fur f all deaths in the UK [General Register Office fr Sctland, 2008; Nrthern Ireland Statistics and Research Agency, 2008; Office f Natinal Statistics, 2008]. Survival rates are belw thse f mst cmparable cuntries, and it is argued that this is largely due t later diagnsis. The principal methd f identificatin f cancer in the UK is symptmatic presentatin, usually t general practitiners (GPs), wh as a result f their gate-keeping rle within the NHS are the usual surce f referral t secndary care. Whilst patient delay represents a greater prprtin f ttal pre-hspital time t cancer diagnsis than GP delay, there is nw cnsiderable pressure n primary care t reduce ptential hld-ups in the system. As part f the Natinal Awareness and Early Diagnsis Initiative (NAEDI) t prmte timely diagnsis f cancer, a natinal audit f cancer diagnsis in primary care has been cmmissined. This incrprates the cnduct and evaluatin f Significant Event Audits (SEA) fr cancer, and the results f that wrk are presented in this reprt. "Any event thught by anyne in the team t be significant in the care f patients r the cnduct f the practice" Pringle et al, 1995 Significant Event Audit is a quality imprvement technique that is in rutine use in general practice. It was develped in the mid-1990s as a methd f quality assurance, with the aim enabling primary care teams t identify and learn frm strengths and weaknesses in the prvisin f care [Pringle et al, 1995]. SEA can be applied t any aspect f healthcare, and prvides a structured narrative analysis f the circumstances surrunding the event f interest. This can be smething that almst went wrng, r that did g wrng, r equally it can be smething that went well. In 2004, SEA was incrprated as an educatin indicatr int the Organisatinal dmain f Quality and Outcmes Framewrk (QOF), as part f the New General Medical Services cntract. Thrugh this, payments are made t practices that have undertaken a minimum f twelve significant event reviews in the past 3 years, which culd include... new cancer diagnses [BMA, 2004]. In additin, SEA is a prcess that is encuraged by the Natinal Patient Safety Agency (NPSA), which states that significant event audit shuld be undertaken by all primary care practices... [Natinal Patient Safety Agency, 2006]. Relatively little research has been carried ut int the use f Significant Event Audit in primary care practice. Previus wrk has invlved the develpment f reliable tls fr peer assessment f SEAs carried ut by GPs [McKay et al, 2007]. Other researchers have reviewed SEAs carried ut in their wn district [Cx and Hlden, 2007]. Hwever, a recent review f the evidence-base in this area demnstrated that t date, a chasm exists between the high expectatins fr SEA and the lack f evidence f its impact [Bwie et al, 2008]. This was attributed, amngst ther things, t the lack f a rbust, standard structured methd t the prcess, and t selective tpic chice by practitiners. Page 9

11 Analysis f an event can be guided by fur questins: what happened, why did it happen, what has been learned, what has been changed? The prject reprted here sught t use established research methds t evaluate the use f SEAs n an area f service develpment. Cgnisance was taken f the cncerns dcumented by Bwie et al, regarding structure and subject matter, and the prject used a single, well established SEA template fr a clinical tpic area nt selected by the GPs cnducting the audits. Whilst cllectin f SEAs in sme frmat r anther can nw be cnsidered part f rutine clinical general practice, use f the resultant data fr research purpses, such as that reprted here, is nvel. It was agreed with the Natinal Cancer Directr that this wrk wuld relate t lung cancer and cancers affecting teenagers and yung adults (TYA). Page 10

12 4. AIMS AND OBJECTIVES The verall aim f this study was t gain insights int the events that surrund the diagnstic prcess fr tw cancer grups (lung cancer and cancers affecting teenagers and yung adults), drawn frm secndary analysis f Significant Event Audit dcuments. The specific bjectives were t: 1. Cnsider the presenting factrs fr patients with lung cancer, and determine thse that may be amenable t interventin in rder t impact n the prcess t presentatin, 2. Cnsider the practice r service related issues fr patients with lung cancer, and determine thse that may be amenable t interventin in rder t impact n the diagnstic and referral prcess, 3. Cnsider the presenting factrs fr teenagers and yung adults with cancer, and determine thse that may be amenable t interventin in rder t impact n the prcess t presentatin, 4. Cnsider the practice r service related issues fr teenagers and yung adults with cancer, and determine thse that may be amenable t interventin in rder t impact n the diagnstic and referral prcess, 5. Identify the key learning pints that practices have drawn frm cnsidering these diagnses, alng with any changes that they have intrduced t their practice, 6. Determine whether the narratives and reflectins presented differ depending n whether they relate t a cmmn r a rare cancer, 7. Identify case studies f gd practice. Page 11

13 5. METHODOLOGY 5.1 ETHICAL CONSIDERATIONS The Natinal Research Ethics Service (NRES) was cntacted prir t the study being undertaken, and advised the research team that this wrk was cnsidered t be serviced evaluatin and as such did nt require NHS ethical review. The prject was apprved by the Faculty f Medicine Research Ethics Cmmittee at the University f Glasgw. Data analysis is based n SEAs cmpleted as part f the NAEDI initiative. The GPs invlved were infrmed that any SEAs prvided wuld be subject t secndary analysis fr research purpses, and were aware that there was n pssibility that the practice wuld identifiable t the research team. In rder t maintain that annymity, written cnsent was nt prvided but was implicit in the return f the SEA reprts. 5.2 STUDY SETTING This research was carried ut in tw NHS areas in the nrth east f England, NHS Suth f Tyne and Wear, and NHS Cunty Durham, which are incrprated within the Nrth f England Cancer Netwrk (a netwrk cvering a ppulatin f ver three millin service users). A ttal f 202 general practices frm urban, rural and semi-rural areas, prviding primary health care services t ppulatins frm differing sci-ecnmic areas, were invited t participate. 5.3 DATA COLLECTION As part f the NAEDI initiative, general practices in the relevant PCTs were cntacted by the lcal NHS Cancer Leads and asked t undertake tw significant event audits related t cancer diagnses. They were asked t identify the last patient in the practice diagnsed with lung cancer, and the last patient diagnsed with cancer as a teenager r yung adult (i.e. aged 15 25). They were specifically asked t include patients wh may since have died, as it was expected that this might be the case in sme instances. It was anticipated that fr many practices the last yung persn might have been diagnsed several years ag, hwever we thught it likely that many practices wuld still have recrds f these diagnses, and given the infrequency f such cancers in practice, that they wuld remember such a diagnsis sufficiently t cmplete an SEA reprt. Where there was n such diagnsis within the histry f the current partners, practices were asked t send SEA reprts relating t the last tw lung cancer diagnses. Practices were prvided with an electrnic template n which t dcument their SEA (Appendix A). This was based n the structure recmmended by the Natinal Patient Safety Agency, and cmprised five sectins t enable practitiners t 1) dcument the prcess f the event, 2) reflect n and understand what and why it happened, 3) identify the learning pints, bth gd and bad, 4) cnsider changes t be made r actins t be taken (r that have already been made r taken), and 5) cnsider what was effective abut the SEA. In additin, as part f these sectins, we included sme specific pinters fr GPs t cnsider when cmpleting the prfrma, in rder t try t build a richer and mre cmprehensive understanding f the circumstances surrunding diagnsis f these cancers. SEA reprts were returned t the relevant NHS Cancer Lead, wh ensured that n identifiable data had Page 12

14 been included, and that the reprts were annymised. Fllwing this prcess, the reprts were frwarded t the research team. 5.4 DATA ANALYSIS Since the SEA reprts represent a narrative accunt f a specific event, in this case a new diagnsis f cancer, and the cntext surrunding it, a qualitative apprach t analysis was emplyed. The SEA dcuments were read thrugh and EM recded the raw data thematically, fllwing discussin with UM abut emerging themes. At the utset, a sample f reprts were reviewed and cded independently by bth EM and UM as a means f validating the analytic prcess. In rder t better understand the factrs surrunding the pathway f diagnsis and referral, an interpretative matrix was develped fr lung cancer (Appendix B) and fr teenage and yung adult cancers (Appendix C). The matrix was based n a mdified framewrk apprach, and relevant data frm each SEA were incrprated int a thematic chart as a means f facilitating the identificatin and interpretatin f bth cmmn and diverse aspects related t each cancer. QSR Nviv 2.0 sftware was used t facilitate the analysis f themes and systematic cmparisns acrss reprts. In additin t cding, cmparisns were made n the reflectins prvided by practices in relatin t the prcess f diagnsis, what happened in each case and why it happened. These reflectins were reviewed t try and identify psitive and negative narratins f events, thereby determining whether there is a difference in SEA reprting depending n whether the audit relates t diagnsis f a cmmn r rare cancer. Page 13

15 6. RESEARCH FINDINGS 6.1 PARTICIPATING PRACTICES AND SIGNIFICANT EVENTS Significant Event Audits were received frm a ttal f 92 practices, 46% f thse invited t participate. Thirty eight percent (n=35) returned audits related t bth lung and teenage and yung adult cancers, while a further 44% (n=40) returned tw lung reprts. The remainder returned ne lung audit. Thirteen practices had returned reprts related t teenage and yung adult cancers, but the patients cncerned were utwith the relevant age range, and as such, the reprts were excluded frm this analysis (ne practice subsequently returned an additinal lung reprt). Participating practices encmpassed a range f gegraphical and rganisatinal settings. Mst were based in urban r semi-urban lcatins, with mre than tw-thirds having a patient list f mre than 5,000 (Table 1). Over half did nt have training practice status, althugh many did teach medical students (55% f all practices; 75% f training practices; 42% f nn-training practices). Table 1: Characteristics f participating practices PRACTICE CHARACTERISTIC LUNG SEA (%) TYA SEA (%) TOTAL NUMBER OF PRACTICES 92 (100.0) 35 (38.0) List size Gegraphical lcatin Training status Teaching status <2,500 patients 11 (11.9) 2 (5.7) 2,501-5,000 patients 16 (17.4) 3 (8.6) >5,000 patients 62 (67.4) 29 (82.8) Unknwn 3 (3.3) 1 (2.9) Urban 50 (54.3) 18 (51.4) Semi-urban 30 (32.6) 14 (40.0) Rural 9 (9.8) 2 (5.7) Unknwn 3 (3.3) 1 (2.9) Training practice 40 (43.5) 18 (51.4) Nn-training practice 50 (54.3) 16 (45.7) Unknwn 2 (2.2) 1 (2.9) Teaches medical students 51 (55.4) 25 (71.4) Des nt teach medical students 39 (42.4) 9 (25.7) Unknwn 2 (2.2) 1 (2.9) SEA reprts were returned fr a ttal f 132 lung cancer diagnses and 35 diagnses related t cancer in teenagers and yung adults (Table 2). Mst f the lung diagnses were made in (85%), with the remainder (n=20) diagnsed between 2003 and Average age at diagnsis was 68 (SD 11.1). Date f diagnsis fr TYA cancers ranged frm Page 14

16 1986 t 2009; tw in the 1980s, three in the 1990s, and the remainder since 2000, with the majrity (71%) diagnsed frm 2005 nwards. Average age at diagnsis was 20 (SD 2.8). Arund half f all patients in each grup were recrded as being male, and the majrity were alive at the time f SEA cmpletin (64% lung; 86% TYA). Table 2: Characteristics f included patients by cancer type PATIENT CHARACTERISTIC LUNG (%) TYA (%) TOTAL NUMBER OF PATIENTS Gender Age at diagnsis Vital status Male 64 (48.5) 18 (51.4) Female 43 (32.6) 6 (17.1) Unknwn 25 (18.9) 11 (31.4) Range Mean / SD 67.9 / / 2.8 Alive 85 (64.4) 30 (85.7) Dead 47 (35.6) 5 (14.3) 6.2 INSIGHTS INTO THE REFERRAL PROCESS FOR LUNG CANCER Infrmatin reprted within the SEAs in relatin t the prcess f referral fr lung cancer was extracted and incrprated int an interpretative thematic matrix (Appendix B). In this sectin we present a synthesis f these data. Whilst we did nt btain any identifiable practice r patient data fr the lung reprts, we did nt want t include any details in the matrix that might make the cases appear less annymus. We have included age at diagnsis and infrmatin n lifestyle factrs such as smking status, as these are f relevance. Hwever, we have nt included year f diagnsis r patient gender. The data relate t the prcess f care frm first presentatin with a symptm, and in sme instances als include cntextual infrmatin abut presentatins in the preceding year. Due t the nature f the SEA prcess, which primarily relates t reflectin n care prvisin, the GPs have fcused mainly n what happened fllwing presentatin, althugh sme have made additinal cmment n hw lng patients tlerated symptms befre presenting. The data presented demnstrate the cmplexity f the prcess f diagnsis f lung cancer. Chest symptms are cmmn in general practice, and extremely cmmn amng smkers, wh have a much higher risk f lung cancer than ther ppulatin grups. It is within this cntext that GPs have t decide wh t treat, wh t investigate, and wh t refer Initial symptm(s) n presentatin The SEA reprts have prvided a substantial amunt f infrmatin regarding patient symptms n initial presentatin (Appendix B). Page 15

17 Fr the purpse f trying t understand these in greater detail, presenting patterns can be sub-divided int three main categries: [1] Chest symptms and symptms suggestive f malignancy. Reprted symptms that fall int this categry included: cugh, with r withut phlegm, and ther chesty symptms ften initially suggestive f infectin shrtness f breath haemptysis chest pain shulder pain weight lss harseness chest wall swelling lymphadenpathy Of the 132 lung cancer SEAs analysed, almst three quarters f all patients discussed (n=97; 74%) presented with a symptm r symptms in this categry. [2] Other symptms that wuld generally nt be thught t be suggestive f lung cancer. Fr sme patients whse symptms fell int this categry, lung cancer may have been an incidental finding in the investigatin f ther symptms. Fr thers, the presentatin was unusual, while fr thers still, the presentatin reflected metastatic disease. Reprted symptms in this categry included: abdminal and epigastric pain painful leg lack f c-rdinatin f legs atrial fibrillatin (AF) relatives nticed lips blue weakness left hand and arm arm pain neck pain feeling f lump in thrat rutine blds fund t be abnrmal vague symptms Of the 132 lung cancer SEAs analysed, a small number (n=20; 15%) f the patients discussed presented with a symptm r symptms in this categry. [3] Events where the diagnsis did nt arise frm the patient presenting with a symptm t a GP. Of the 132 lung cancer SEAs analysed, a minrity f patients (n=15; 11%) presented in this way. Patients were diagnsed in a number f ways, including: n bld checks fr rheumatic disease, GP nticed rising inflammatry markers rising and falling Hb emergency admissin fr UTI; emergency admissin with a fractured hip Page 16

18 A&E attendance with chest pain (fur different patients); A&E attendance with haemptysis seen by Urgent Care Team with cugh and admitted t hspital under fllw up fr bladder tumur, referred t respiratry with pulmnary ndule lung primary fund during CT scan as fllw up fr anal cancer diagnsis made abrad incidental finding as part f dementia wrk-up It was unclear frm many f these accunts wh had rganised these emergency admissins. Cnsequently, we have nt assumed that the GP did s, as there are ther accunts f emergency admissins within the categries listed abve in which it is very clear that it was arranged by the GP. It is als pssible that sme f the admissins described here were arranged ut f hurs. These descriptins demnstrate that while fr many patients initial presentatin was abut lung and lung related symptms, the nature f the presentatins varied hugely, and ccurred in the cntext f ther illnesses, as well as a knwn tendency fr smkers and fr thse with chrnic bstructive pulmnary disease (COPD) t present with chest infectin type symptms. The text bk presentatin f haemptysis, while reprted, was nly the case fr a minrity f the patient included in this study. Much mre cmmn was a cmbinatin f symptms initially pinting t chest infectin; almst half f the cases presented in the SEA reprts presented in this way GP respnse t presentatin Respnses made by GPs, bth t the initial presentatin and then t subsequent cnsultatins, were in keeping with cmmnly accepted practice. Thus, at first presentatin thse presenting with new chest related symptms were frequently examined, examinatin findings nted, antibitics prescribed, and chest x-ray (CXR) rdered. Other dcumented respnses include venepuncture, referral t specialist clinic r t anther primary care prfessinal (such as a physitherapist), emergency admissin, arrangement f fllw-up review, r patients advised t return if there was n imprvement. Other patients were given analgesia fr pain, and sme were given smking cessatin advice. Many patients were seen mre than nce in general practice. Subsequent respnse by the GP was determined by the nature f the symptms; many patients were re-examined, sme had further curses f antibitics. Many had a CXR rdered fr nn reslving symptms, and thse wh became mre unwell were admitted as emergencies The ccurrence f c-mrbidity As might be expected, the vast majrity f patients cnsidered in these SEAs were smkers r ex-smkers, and many had already been diagnsed with COPD, r with ne f the ther diseases fr which smking is a risk factr, including crnary artery disease, cerebrvascular disease and peripheral vascular disease. Other fairly cmmnly reprted c-mrbidities were anxiety, depressin, hypertensin, ther chest cnditins including asthma, and diabetes. A small number f patients were reprted as having atrial fibrillatin (AF), anther cancer, arthritis, dementia, hypthyridism r renal prblems. In additin, a number f the reprts dcumented previus asbests expsure r that the patient was an Page 17

19 ex-miner, perhaps reflecting the gegraphical setting f the audit. As discussed in subsequent sectins, the existence f these additinal mrbidities and lifestyle factrs is likely t have cntributed t interpretatin f symptms and GP respnse t presentatin Time t referral Time interval frm initial patient presentatin with a relevant symptm t referral r acute admissin was identifiable in the majrity f SEA reprts related t lung cancer (n=115; 87%) and data are presented in Figures 1 3. Figure 1 presents time in days fr all patients fr whm data were available. Figure 2 presents data fr thse patients whse initial symptm was chest related r ptentially related t a lung malignancy, and a distinctin is drawn between thse wh had a CXR in primary care and thse wh did nt. Figure 3 shws data fr the remainder wh presented with ther symptms. The verall time interval ranged frm ne t 438 days (mean 59 days; median 21, and varied in relatin t whether the symptm was respiratry in nature r was indicative f sme ther cause (Table 3). Regardless f symptm type, almst 60% f all patients were referred within ne mnth f initial presentatin. Table 3: Time t referral fr lung cancer DAYS SYMPTOM TYPE All (n=115)* Respiratry (n=96) Other (n=19) Range Mean Median (59%) 53 (55%) 14 (74%) * Number relevant / fr whm data were available Patients had a variable number f cnsultatins with a GP prir t referral. These ranged frm ne cnsultatin (at which the referral was made, r a CXR carried ut which subsequently resulted in referral), t 12 cnsultatins in ne particular case. Of thse patients wh first presented t general practice, and fr whm we were able t identify the number f cnsultatins (n=106), the majrity (72%) were seen between ne and three times prir t referral (Table 4). Hwever, cnsidering number f cnsultatins is nt in and f itself particularly infrmative r useful in relatin t understanding the referral prcess, as sme patients were seen mre than nce within the perid f a week, while fr thers there were several weeks between their first cnsultatin and being seen again. It is therefre mre helpful t cnsider the verall time taken frm presentatin t referral, and thse factrs that related t lnger referral times. Page 18

20 Table 4: Number f cnsultatins prir t referral fr lung cancer CONSULTATIONS PATIENTS (%) 1 32 (30.2) 2 28 (26.4) 3 16 (15.1) 4 12 (11.3) 5 9 (8.5) 6 4 (3.8) 7 1 (0.9) 8 1 (0.9) 11 2 (1.9) 12 1 (0.9) Figure 1: Time t referral/acute admissin fr all lung cancers Page 19

21 Figure 2: Time t referral/acute admissin fr presentatin with respiratry symptms Figure 3: Time t referral/acute admissin fr presentatin with nn-respiratry symptms Page 20

22 6.2.5 Understanding referrals ccurring mre than ne mnth after presentatin In this sectin f the analysis, we carried ut detailed examinatin f thse descriptins f the referral prcess where that prcess tk lnger than ne mnth, that is, mre than 31 days. This is an arbitrary time pint, and has nt been selected because we cnsider either that time t referral f lnger than a mnth is necessarily unacceptable, r even that time t referral f up t ne mnth is acceptable in all cases. Indeed, as has already been demnstrated (see Figures 1 3), in many instances patients were referred much earlier than this. Rather, ne mnth has been selected as this wuld seem t be a reasnable time fr the fairly typical presentatin (frm ur data) f Step 1: chest related symptm(s) t Step 2: initial treatment with antibitics ± sterids t Step 3: early review if n imprvement t Step 4: CXR arranged n review t Step 5: CXR reprt t Step 6: referral. In sme instances, implementing a cut-ff at the level f ne mnth fr this mre detailed analysis may appear t be severe, but we wanted t ensure that we did nt miss the learning pprtunities that might arise frm cnsidering patients referred just after a mnth. We have categrised these referrals int thse fr which presentatin was with a chest symptm r ne ptentially related t a lung malignancy, and thse fr which presentatin was with a nn-chest symptm. A detailed interpretatin f these presentatins can be fund in Appendices D and E Chest r malignancy related symptm presentatin Frty five ut f the 132 lung cancer patients presented in the SEAs were referred mre than ne mnth after initial presentatin with a chest r malignancy related symptms. In the main, explanatry factrs fr these lnger times t referral fell int ne f three brad classificatins related t a) initial CXR reprts, b) patient mediated factrs, and c) cmplexity f presentatin. Fr sme diagnstic events, the explanatin invlved factrs related t mre than ne f these categries. Fr thers, whilst a lnger time t referral was invlved, the initial respnse made by the GP was reasnable given the circumstances surrunding the presentatin (see d) belw). a) Initial CXR reprted as nrmal r with findings cnsistent with benign disease Sixteen f the frty five referrals fit in t this categry (Appendix D). In eleven cases, the CXR was repeated thrughut the primary care diagnstic prcess, in five cases at the suggestin f the radilgist. This is an imprtant finding frm these data and it prvides an pprtunity t cnsider hw patients with a nrmal r benign lking CXR shuld be managed. In eight cases, the CXR was reprted as nrmal r shwing n change frm previus films. In ther cases, the CXR shwed infectin, inflammatry changes r was incnclusive. In ne rather unusual case, referral t the breast clinic was advised as the mass seen was thught by the radilgist t represent a breast tumur. This was subsequently diagnsed as a lung cancer. b) Patient factrs In a number f cases (L-01, L-33, L-68, L-74, L-83, L-107, L-125) patient factrs had a bearing n time t referral after first presentatin. These factrs included: waiting sme cnsiderable time after the first cnsultatin befre re-presenting with n-ging symptms (e.g. 11 weeks, 12 weeks, 8 declining referral when it was first ffered r recmmended by the GP Page 21

23 failing t attend appintment fr CXR r chest clinic declining t see the GP when recmmended by the nurse declining hspital admissin It is likely that the reasns behind these patient decisins are cmplex. Hwever, as a result f the nature f infrmatin prvided within the SEA reprts, it is nt pssible t understand these decisins further within this analysis. c) Cmplexity f presentatin Analysis f a number f SEA reprts demnstrated the intricacy f the cases discussed, and led t the cnclusin that the set f presenting symptms, althugh chest r malignancy related, were s cmplex that it wuld have been challenging t reach an earlier diagnsis. In these situatins, the cmplexity related either t c-mrbidity (L-10, L-35, L-76, L-79, L- 124), t a seemingly alternative initial diagnsis (L-64, L-67, L-122), r t symptms pinting twards a different malignancy (L-99). BOX 1: Cmplexity invlving c-existing disease Case reprt A: Patient (aged 78) presented with cugh and was given antibitics. Attended secndar y care three times each week fr renal dialysis; fur unsuccessful attempts were made by the practice t cntact the patient by phne, assumed t be because f the dialysis sessins. The patient was eventually admitted t hspital. GP and Cmmunity Matrn were bth invlved; in additin, the patient was seen at A&E and discharged. On first emergency admissin with breathlessness, CXR shwed fluid verlad due t a valvular heart cnditin. GP is still unclear as t hw diagnsis was eventually reached. Case reprt B: Healthcare assistant nted that the patient (aged 74) was cughing a lt. Had been n an ACEi and initially the cugh was thught t be caused by this. The ACEi was changed t an ARB t which the patient had a reactin. Als had numerus cnsultatins with ther s ym ptms (including numbness in arm, dizziness, shingles type pain, leg cramps). In additin, a previus CT scan frm general medicine shwed incidental findings (40 weeks befre abnrmal CXR). Diagnsis was eventually made n CXR carried ut at a general medicine ut-patient appintment; this shwed dense L helium, culd be vascular r tumur, advised referral t chest physician (35 weeks after initial cnsult). Page 22

24 BOX 2: Cmplexity invlving a seemingly alternative initial diagnsis Case reprt C: Patient (aged 69) presented with a swllen, red and sre arm and shulder pain, but had been given the pneumcccal vaccine the day befre, and s this was diagnsed as an adverse reactin. The patient next presented 13 weeks after the initial cnsult cmplaining f back pain fr which they had cnsulted seven times in the previus year. An MRI scan was carried ut as there was cncern abut nerve rt signs; this shwed an artic aneur ysm and s the patient was referred t the vascular surgens. Patient next attended almst anther mnth later with cntinuing shulder pain and pain ver the scapula n cughing. As the patient was a heavy smker, they were sent fr a CXR which shwed a mass, and s they were urgently referred. The back pain was nt related t the cancer diagnsis. Case reprt D: Patient (aged 63) presented with shulder pain after press-ups, and it was thught that the pain was due t sft tissue injur y. On the furth cnsultatin with nn-reslving shulder pain, an urgent CXR was arranged. The patient thught that the pain was due t injur y but at the third cnsultatin they had als cmplained f tiredness and weight lss. CXR was arranged ne week later. BOX 3: Cmplexity invlving symptms suggesting a different malignancy Case reprt E: Patient (aged 75) presented with persistent laryngeal discmfrt, variable harseness, and was cnsequently referred t ENT. At the ENT clinic, lar yngscpy was carried ut and was nrmal (apprx weeks after initial cnsult); hwever s ymptms persisted and the patient was re-referred t the ENT clinic apprximately ne year after initial cnsult; again, n abnrmality was fund. The patient was then referred t the chest clinic, and was seen arund three mnths later, where lung cancer was diagnsed. d) Described event invlved a reasnable respnse t initial presentatin Sme SEA reprts described scenaris which, althugh nt unduly cmplex, and thus culd did nt fit int the previus categry (althugh clearly this is a subjective judgement), nnetheless indicate that an apprpriate r reasnable curse f actin had been undertaken by the GP at initial presentatin. Sme f the events falling int in this categry invlved patients wh were referred just a few days lnger than a mnth. They included: L-11: Patient presented with right axillary chest pain, which was thught by the GP t be musculskeletal. Patient was next seen three weeks after initial cnsultatin, and althugh this was mainly t d with cardivascular risk assessment, a CXR was arranged, which suggested malignancy. The reprt f this came thrugh seven days later; the patient culd nt be cntacted fr three days due t wrk cmmitments, and cnsequently was referred 10 days after CXR, making time frm first presentatin t referral five weeks. L-13: 90 year ld patient presented with a fur day histry f a tender swelling n the anterir chest wall. The pssibility f a metastatic ndule was cnsidered, but tenderness suggested infectin and the patient was therefre prescribed antibitics. Active management f a cancer was always cnsidered inapprpriate (presumably in view f the patient s age). At the secnd cnsultatin (ne mnth after initial cnsult), referral was discussed but deferred at the patient s request, althugh they were referred ne week later. Page 23

25 L-26: 70 year ld patient presented with a persistent (n detail accmpanies use f the wrd persistent ) prductive cugh with yellw sputum, having nt had any ther cnsultatins in the previus year. The patient was a never smker, but had been a passive smker. Antibitics were prescribed and the patient returned just ver ne mnth after the initial appintment. The cugh was still present s a CXR was then requested. L-85: Patient mentined cugh in passing during a crnary heart disease review with the GP and a check up fr raised MCV. The GP arranged repeat blds; and advised the patient t return if the cugh had nt settled in ne mnth. The patient returned fur weeks after initially seen. CXR was requested that day and subsequently a 2WW chest clinic referral was made. It seemed reasnable t ask the patient t return in ne mnth if the cugh had nt settled (althugh we acknwledge that the guidelines suggest three. Hwever, we can als cnsider that if the GP had nt fllwed up the raised MCV by inviting the patient fr review (cmpared, fr example, t writing with a request t attend fr mre bld tests, which wuld have been an alternative reasnable curse f actin), the patient may nt have cmplained f the cugh fr sme time. L-114: Patient presented with infective symptms and was referred fr an urgent CXR ne mnth after initial presentatin when they develped haemptysis. L-115: 93 year ld never smker presented with a several week histry f dry cugh, was given antibitics, and at review said the cugh had cleared up. CXR was arranged at the next cnsultatin, almst three mnths later, when the patient cmplained that the cugh had persisted Opprtunities fr earlier diagnsis f lung cancer invlving chest symptms Detailed analysis f the 45 reprts in which referral tk lnger than a mnth highlighted a number f cases in which pprtunities fr earlier diagnsis may have been missed (Appendix D). As far as we can determine, there were nine such cases within these data. This amunts t ne fifth f thse wh were nt referred within a mnth, and a small prprtin f the ttal number f patients wh presented with chest r malignancy suggestive symptms within primary care (9%). These are imprtant cases as they affrd pprtunities fr learning and cnsideratin f changes that might be put in place t prevent lnger referral times. We present these cases taking full cgnizance f the challenges faced by general practitiners in differentiating between benign and ptentially malignant symptms, particularly in patients with knwn chest disease. Our cncern is t learn frm referral histries in rder t imprve care fr patients with ptential lung cancer symptms as much as pssible. Examples f such cases are as fllws: L-07: 1 week histry f cugh in a 62 year ld smker treated as a viral infectin. The next presentatin was 22 weeks later. Hwever, the patient had seven cnsultatins befre being referred 63 weeks after first presentatin with cugh. These cnsultatins included cmplaints f chest pain (but tender ver chest wall and acrmiclavicular jint), pains in shulder and neck, chesty cugh, cugh and chest pains diagnsed as chest infectin, further chest infectin, ankle swelling and pleuritic chest pain. Page 24

26 L-49: Patient had tw cnsultatins, 22 days apart fr URTI symptms. They then represented six weeks after the secnd cnsultatin with shrtness f breath at which pint a CXR was carried ut. It is nt pssible t tell frm the infrmatin prvided whether the tw initial tw cnsultatins were URTIs (n bth ccasins chest was clear, but an antibitic was given n the secnd ccasin), r whether a different interpretatin might have led t an earlier diagnsis. L-88: 63 year ld patient with knwn asbests expsure presented with increasing shrtness f breath. CXR rdered tw mnths after initial cnsultatin. L-92: 66 year ld patient with knwn COPD was seen five times with exacerbatins f COPD in the five mnths prir t referral. Patient was sent fr a CXR when cmplained f weight lss. There is a pssibility that sme changes may have been detected in sme f the earlier presentatins, which appear t have been diagnsed as separate episdes. L-110: 59 year ld patient presented with a three week histry f cugh and was given antibitics. Next re-presented tw mnths later, still cughing, s was sent fr urgent CXR. The patient was a nn-smker which may have lwered the index f suspicin, but guidelines wuld suggest CXR shuld have been carried ut at initial presentatin. L-116: 64 year ld patient with knwn COPD, well knwn t the respiratry team, presented with increasing shrtness f breath, cugh, wheeze and leg weakness. Specialist respiratry nurse als invlved. Referral was made when symptms wrsened further by which time patient had superir vena cava bstructin. L-118: 59 year ld patient presented with a tw mnth histry f persistent cugh with yellw phlegm. Was prescribed antibitics and then next re-presented in a further tw mnths. L-119: 82 year ld patient presented with a chesty cugh with purulent sputum. Next presented fur weeks later with similar symptms, then again anther 20 days later. CXR was arranged at the furth cnsultatin. L-125: Patient seen several times with new chest symptms befre CXR rdered. Patient factrs als relevant in this case; patient had a fear f investigatins and hspitals. Page 25

27 The main lessns that can be drawn frm these events are: 1. It can be difficult t differentiate new, ptentially malignant symptms in patients with knwn chest disease. 2. It is imprtant t cnsider the recent histry f presentatins, even if the patient presents the symptms as pertaining t separate episdes. 3. It is imprtant t have apprpriate safety-netting and t put in place fllw up plans with patients, even if they are presenting with their first recent infective episde. 4. It is imprtant fr GPs t maintain an verall view f presentatins and symptms, even if specialist teams are invlved. 5. It is imprtant t cnsider lung cancer as a differential diagnsis in patients presenting with shulder and neck pain, particularly thse in at-risk grups Nn-chest r malignancy related symptm presentatin Of the 20 patients whse histries shwed that they presented with symptms which were nt chest r malignancy related, nly five waited lnger than a mnth befre being referred. Whilst these five cases are interesting, as summarised in Appendix E, all have reasnable explanatins fr the prcess t referral taking lnger than a mnth. They included: Presentatin with epigastric pain, where referral was made t gastrenterlgy after an ultrasund shwed liver metastases. A cmplicated scenari invlving initial presentatin with neck pain and nausea. An ultrasund arranged by gastrenterlgy shwed a pelvic mass and varian cancer was eventually diagnsed. A CT scan perfrmed during wrk up shwed lung cancer, which appears t have been incidental finding. Presentatin with painful left arm, thught initially thught t be musculskeletal. The patient was therefre referred t physitherapy ne day after initial cnsultatin, wh in turn, suggested referral t rthpaedics sme weeks later. Diagnsis was eventually nn small cell cancer invading brachial plexus. Presentatin with left arm and neck pain and referral t physitherapy; hwever, the patient had nrmal investigatins fllwing an episde f haemptysis within the previus year. A patient with hypnatraemia fund during investigatins fr diarrhea, but the initial CXR was incnclusive. Page 26

28 6.2.6 Case studies f exemplary practice in lung cancer diagnsis Many examples f gd practice were dcumented in the lung SEA reprts. Sme specific, exemplary cases are utlined belw. EXEMPLAR A: L-06: Patient presented with a histry f URTI with increasing cugh. Examinatin revealed tenderness ver the anterir chest wall and right chest signs. The patient was prescribed analgesia and antibitics, and given a review appintment with the same GP t check reslutin after treatment. Patient was reviewed tw weeks later and reprted pain was much better but cugh persisted. Examinatin shwed that there were still signs in the chest. CXR was rganised and carried ut tw days later. The fllwing day the reprt was faxed t the surgery. The GP cntacted the patient that day and arranged fr them t cme int the surgery the same day with a family member, after which a was sent. This case demnstrates the imprtance f gd safety-netting, as well as gd cmmunicatin between primary and secndary care, and between the GP and the patient and their family. EXEMPLAR B: L-09: Patient presented with a harse vice and was treated by the GP. Review was arranged fr eight days later at which time the patient was n better. The patient was referred under the 2WW t ENT fr persistent harse vice. CXR was dne as part f the wrk up and shwed a suspicius lesin. The patient was then referred under the 2WW t the chest clinic. This case demnstrates the imprtance f gd safety-netting, as well as gd fllw-up by the GP as part f the referral prcess. EXEMPLAR C: L-14: Patient (50 year ld ex-miner) with a knwn diagnsis f asthma presented with a ne mnth histry f dry cugh. There were chest signs n examinatin and the patient was given a curse f sterids, but because f the duratin f cugh, a CXR was arranged at that initial cnsultatin. This shwed signs f infectin in the right lung. Fllw-up was nt recmmended by the radilgist. The patient attended again arund three weeks later saying that they still had a dry cugh and did nt feel quite right. Chest signs were heard crrespnding t previus CXR changes; the patient was given antibitics but a repeat CXR was rdered t ensure reslutin f infectin. Hwever, the CXR shwed prgressive changes and the patient was immediately referred under the 2WW t the chest clinic. This case demnstrates the imprtance f vigilance, gd safety-netting, and GP fllw-up. Page 27