Using significant event analysis and individual audit and feedback to develop strategies to improve recognition and referral of lung and colorectal cancer at an individual general practice level Daniel Joseph Jones PhD in Medical Sciences The University of Hull and the University of York Hull York Medical School February 2019 - ii - Abstract Introduction: The lifetime risk of developing cancer is 50%. Whilst cancer survival rates are increasing, data suggests UK survival is lower than comparable countries. There is a growing evidence base to suggest cancer survival is linked at least in part, to the early recognition and referral of symptoms in primary care. The role of primary care is vital with 85% of cancers diagnosed following presentation to primary care. Significant event analyses (SEAs) are an effective tool to learn detailed lessons about the primary care interval and SEA research completed so far highlights the importance of safety netting. Method: The research within the thesis was informed by two theories of behaviour change, the Behaviour Change Wheel and Normalisation Process Theory. The methods were split in to three distinct sections. Firstly, a scoping review of safety netting was undertaken. Secondly, the recognition and referral of lung and colorectal cancer symptoms in primary care was investigated using SEAs. Finally, the SEA data generated was used in an audit and feedback intervention to develop a series of action plans. Findings: The definition and content of safety netting was developed. SEAs demonstrated the importance of safety netting in improving the primary care interval, but also highlighted the role of investigations, patient factors and comorbidities. SEA data was used to develop interventions which were accepted by primary care staff. Result synthesis showed the importance of safety netting and led to the development of a model. Discussion: The importance of safety netting has been highlighted throughout the thesis. Further research is needed to evaluate the model developed. Opportunities for improving the primary care interval were highlighted. Developing interventions through audit and feedback with SEAs is feasible, and is accepted by primary care staff. The thesis has left multiple unanswered questions and could pave the way for a larger, more robust study based on the methods and techniques demonstrated. - iii - Table of Contents Abstract ...................................................................................................... ii Table of Contents ...................................................................................... iii List of Figures ........................................................................................... xi Acknowledgements ................................................................................... 1 Chapter 1: Introduction to cancer in primary care ................................... 3 1.1 Cancer Burden .............................................................................. 3 1.2 UK cancer survival comparisons .................................................... 5 1.3 Diagnosing cancer in primary care .................................................. 8 1.3.1 Overview of the role of primary care .................................... 8 1.3.2 Diagnostic pathways ............................................................ 9 1.3.3 Cancer referral guidelines ...................................................11 1.3.4 Assessment of symptoms in general practice .....................12 1.3.5 The PCPs role as a gatekeeper in cancer diagnosis ...........14 1.3.6 Decision support tools ........................................................15 1.3.7 Optimal lung and bowel cancer diagnosis pathway .............17 1.4 Summary .......................................................................................17 Chapter 2: Investigating the pathway to cancer diagnosis ....................19 2.1 Definition of delay ..........................................................................19 2.2 Benefits of a timely diagnosis ........................................................20 2.3 Reasons for increased time to cancer diagnosis ............................22 2.4 Use of audit tools in general practice to understand cancer diagnosis .....................................................................................27 2.4.1 National Cancer Diagnosis Audit ........................................27 2.4.2 Significant event analysis ...................................................27 2.5 Safety netting and cancer symptoms .............................................29 2.6 Interventions to reduce delay in cancer diagnosis ..........................30 2.7 Summary .......................................................................................34 2.8 Aims ..............................................................................................34 - iv - Chapter 3: Audit and feedback and action planning ..............................36 3.1 Evidence for audit and feedback ...................................................36 3.2 Action planning theory ...................................................................40 3.3 Summary and application of theory ................................................41 Chapter 4: Behaviour change theory .......................................................45 4.1 Theory of planned behaviour .........................................................48 4.2 The behaviour change wheel .........................................................51 4.3 Normalisation process theory ........................................................52 4.4 Summary .......................................................................................53 Chapter 5: Research Methodology ..........................................................57 5.1 Study design .................................................................................57 5.2 Methodological theory....................................................................58 5.2.1 Case note review ................................................................58 5.2.2 Epistemological standpoint and analysis method ................59 5.2.3 Case note review analysis ..................................................61 5.2.4 Interview methodology ........................................................62 5.2.5 Summary ............................................................................63 5.3 Setting ...........................................................................................63 5.4 Ethical approval .............................................................................64 5.4.1 Ethical issues .....................................................................64 5.4.1.1 Access to medical records and patient consent .......64 5.4.1.2 Storage of data ........................................................65 5.4.1.3 Recruitment .............................................................65 5.4.1.4 Staff interviews ........................................................65 5.4.2 Obtaining ethical approval ..................................................66 Chapter 6: Safety netting in healthcare consultations: a scoping review.................................................................................................68 6.1 Scoping review method .................................................................69 6.2 Inclusion criteria ............................................................................71 6.3 Search strategy .............................................................................71 6.4 Results ..........................................................................................72 6.4.1 Current definitions of safety netting.....................................73 6.4.2 Timing and recipients of safety netting ................................75 - v - 6.4.3 Information and actions included in safety netting ...............75 6.4.3.1 How and where to seek further medical care ...........76 6.4.3.2 Arrange planned follow up .......................................77 6.4.3.3 Advice on worrying symptoms and ‘red flags’ ...........77 6.4.3.4 The likely time course of the illness .........................77 6.4.3.5 Communicating uncertainty ......................................78 6.4.3.6 Safety netting and investigations .............................78 6.4.3.7 Organisational components .....................................78 6.5 Summary .......................................................................................79 Chapter 7: Using significant event analysis to identify opportunities to improve recognition and referral of lung and colorectal cancer at an individual general practice level ...............81 7.1 Significant event analysis study method ........................................81 7.1.1 Practice recruitment ............................................................82 7.1.2 Electronic medical records searching..................................83 7.1.3 Data collection ....................................................................83 7.1.4 Diagnostic intervals ............................................................85 7.1.5 SEA analysis ......................................................................86 7.2 Significant event analysis study results ..........................................86 7.2.1 Bowel cancer ......................................................................87 7.2.2 Lung Cancer .......................................................................89