Title: Primary care referrals for suspected cancer: understanding variation and developing and piloting quality improvement
Funder: Department of Health and Social Care

Abstract: One in two of the UK population will develop cancer (1). Late diagnosis is a major factor contributing to relatively poorer cancer survival rates in the UK (2) (3). Primary care has a crucial role to play in early diagnosis (9, 10). One in five patients are diagnosed with cancer via emergency routes (6), with poorer survival (7). Guidance on whether GPs should refer urgently is based on National Institute for Health and Care Excellence (NICE) guidelines which were recently updated (25). For many cancers there is good evidence that time to diagnosis and treatment is reduced for patients referred via urgent pathways (21, 22). Since 2010, the National Cancer Intelligence Network (NCIN) (31, 32), has produced cancer profiles for every practice in England. The profiles contain three key measures for each year including: Practice referral ratio: The number of standardised urgent referrals for suspected cancer. Practice conversion rate: The percentage of urgent referrals for suspected cancer that resulted in a diagnosis of cancer. Practice detection rate: The percentage of all new cancer diagnoses which resulted from an urgent referral for suspected cancer. Previous research into these measures (29) showed wide variation between practices. Research from the applicant and supervisor has shown higher practice use of urgent referral (higher referral ratio and detection rates) leads to improved patient survival (33). This proposal will investigate long term trends in these practice cancer measures in conjunction with specific cancer site, patient survival and staging data. There is limited research into GPs' views of early cancer detection (36) (37), and few studies investigating patient experiences of referral for suspected cancer (38, 39). No studies have utilised the variation in urgent referral between practices to inform sampling for qualitative research. There are few publications in the field of quality improvement in primary care and suspected cancer referral (48) (49). Effective interventions need to be multi-faceted (42-44) and developed locally (45). Aims: 1.Identify the characteristics of general practices with low cancer referral ratios and low cancer detection rates 2.Determine the association between use of the urgent cancer referral pathway and mortality of patients with cancer over time, and separately for the main types of cancer 3.Identify the barriers and facilitators to urgent suspected cancer referral 4.Work with practices and key stakeholders to develop and pilot quality improvement interventions Study 1 will combine the three key cancer measures outlined above for 2009 2014 with a database of primary care indicators which includes GP, practice and population factors. This will determine the characteristics of practices with low use of the pathway. Study 2 will determine the association between use of the referral pathway and mortality of patients with cancer (and specific cancer types) over time, in collaboration with Public Health England (PHE). Study 3 includes interviews and focus groups informed by previous studies, to explore the variation in referral at patient, practice and CCG levels. Study 4 includes development and piloting of quality improvement interventions, informed by the previous studies and literature. An individualised practice cancer plan utilising locally adapted practice profiles will be developed and piloted at practices previously recruited. The applicant is collaborating with NCIN on development of the cancer profiles, and with key stakeholders including PHE in the translational aspects of this proposal. Patients have been involved in all aspects of developing this proposal, and will continue to be involved via a steering group. This proposal will develop and pilot quality improvement interventions to be tested in future research and grant applications, with the aim of earlier cancer diagnosis and improved patient survival.

Lay abstract: Aims: 1.Identify the characteristics of general practices with low use of urgent suspected cancer referral pathways 2.Determine the association between use of the urgent cancer referral pathway and mortality of patients with cancer over time, and separately for the main types of cancer 3.Identify the barriers and facilitators to urgent suspected cancer referral 4.Work with practices and key stakeholders to develop and pilot quality improvement interventions Approximately one in two of the UK population will develop cancer in their lifetime. Late diagnosis is a major factor contributing to relatively poorer cancer survival rates in the UK. Primary care has a crucial role to play in early diagnosis. One in five patients are diagnosed with cancer via emergency routes (eg A&E), with poorer one year survival. Concerns about delays in diagnosis led to implementation of urgent suspected cancer referral pathways, such as the two week wait (access to a specialist or investigation ideally within 2 weeks of GP referral) in England. Guidance on whether GPs should refer patients urgently is based on National Institute for Health and Care Excellence (NICE) guidelines which were recently updated (June 2015), lowering the risk threshold for referral. The updated guidance could increase in referrals to 2 million per year with significant potential cost implications. For some cancers there is good evidence that time to diagnosis and treatment are reduced in patients referred via these urgent pathways, and have better survival rates, compared to patients diagnosed via emergency routes. Since 2010, the National Cancer Intelligence Network (NCIN) has produced cancer profiles for every GP practice in England, containing three key measures for each year: Practice referral ratio: The number of urgent referrals for suspected cancer, standardised for each practice Practice conversion rate: The percentage of the practice's urgent referrals for suspected cancer that resulted in a cancer diagnosis. Practice detection rate: The percentage of all new cancer diagnoses for the practice which resulted from an urgent referral for suspected cancer. Example: a GP practice refers 100 patients for suspected cancer in 2014. 10 out of 100 patients referred have cancer, conversion rate is 10%. A total of 20 patients for the year are diagnosed with new cancers, so detection rate is 50%. Previous research using these measures showed wide variation in referral and detection rates between practices. Research from the applicant and supervisor has shown that patients from practices with higher use of urgent referral have improved survival. This proposal will investigate long term trends in referral ratios, conversion rates and detection rates, in conjunction with cancer site (eg lung, colorectal, breast, prostate), patient survival and cancer stage (how far it has spread). There is limited research into GPs' views of their role in early cancer detection, and few studies investigating patient experiences of referral for suspected cancer investigation. No previous research has utilised the variation in urgent referral between practices to inform interview studies. There are also few publications in the field of quality improvement in primary care and suspected cancer referral. Study 1 will combine the three key cancer measures outlined above for 2009 2014 with a set of indicators including GP, practice and population related factors. This will determine the characteristics of general practices with low use of urgent referral. Study 2 will determine the association between use of the urgent cancer referral pathway and survival of patients with cancer over time, and for the main types of cancer. This will be in collaboration with Public Health England (PHE). Study 3 includes interviews and focus groups informed by the previous studies, to explore the variation referral. The proposal includes focus groups and interviews with patients, GP practices and local area cancer leads. Study 4 includes the development and piloting of quality improvement interventions to potentially improve cancer detection via urgent referral. The findings of the previous studies will be used. An individualised practice cancer report and plan with locally adapted cancer data will be developed and piloted at the 10-12 practices previously recruited. The applicant is collaborating with NCIN on the development of the cancer profiles. Patients have been involved in all aspects of the development of this proposal, and will continue to be involved via a project steering group. This work will link with ongoing Cancer Research UK (CRUK) primary care facilitator and NHS England ACE (Accelerate Coordinate and Evaluate) projects. This proposal will lead to further research and grant applications testing the quality improvement interventions, with the aim of improving earlier cancer detection and patient survival.

Research activity codes: 4.2 EVALUATION OF MARKERS AND TECHNOLOGIES;7.3 MANAGEMENT AND DECISION MAKING
Health categories: CANCER AND NEOPLASMS