Melanie Ridge, Project Manager Vicki Spencer-Hughes, SpR Public Health
Welcome Background to project Progress and findings to date Next steps
Overview and rationale • The A&E Service Evaluation is a priority for London Cancer: earlier diagnosis, working in partnership with primary care and public health • It supports the interface between primary and secondary care and seeks to better understand the reasons why people present via the emergency route and to examine the affect this has on overall health outcomes • First time that an analysis of patients’ route to diagnosis will be combined with their own reported behaviour and involvement with the health care system
Methodology • Identifying all patients in secondary care who have a cancer diagnosed via emergency presentation (1200 patients). • Capturing secondary data for root cause analysis (patient demographics, symptoms, primary and secondary care history, route to diagnosis, site and staging, tests, treatment intent, and date of death if applicable). • Offering a patient questionnaire (based on the national Cancer Patient Experience Survey but shorter) to all patients identified in secondary care. • In-depth patient interviews will be carried out with 40 patients (by Dept. of Applied Health Research, UCL). • Contacting patients’ GPs to request information on primary care history (approximately 960 patients); • Triangulation of findings to identify reasons for emergency presentation
Progress to 8 May 2013 Primary Care RCA Expected 299 Patients Secondary Sent out 52 Identified RCA received Patients for Patient Expected 1014 Expected 441 interview Questionnaires Actual 441 Actual 300 Expected* 299 Target 30-40 Actual 44 Agreed 17 Done 5
Preliminary findings - demographics • To date we have analysed Age group of persons diagnosed via RCAs on 300 people emergency route in A&E audit Age and gender: 40 • 147 male, 149 female • 30 Mean age of women 69.9 years and men 66.8 years 20 Ethnicity: 10 • Predominately White: White British 42% , White Other 0 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85-89 90-94 95 plus 12%, • British 6%, • BME c 12% • 24% not recorded;
Preliminary findings – diagnosis, staging and outcomes % of emergency diagnoses by site of cancer – A&E audit v National data Site of cancer: • >25% lung, 15% CRC, 12% Upper GI 30% A&E audit National (HPB) 25% 20% Treatment intent: 15% • 10% Staging data not well recorded 5% • Curative 12%, Palliative 56% 0% • Not recorded 32% Lung: Colorectal: Upper GI (HPB): (blank) Haematology: Upper GI (OG): CUP Gynaecology: Brain & Spine: Breast: Head & Neck: Skin: Urology: Prostate Other Renal Outcomes: • 10% had died between emergency attendance and time data collected – median time to death 16 days (range 3-50 days) Sources: A&E audit; NCIN Routes to diagnosis by cancer type for all malignant diagnoses, excluding C44 (non- melanoma skin cancer) and multiples, in England, 2007
Preliminary findings – use of health services • At least 97% of patients are registered with a GP • ? Functional relationship • Primary care history will come from GP data – in progress • 11 responses – 4 GP suspected cancer, 2 had past history of cancer, 2 changed GPs after diagnosis • Secondary care data capture incomplete but on current information: • Prior to A&E visit leading to diagnosis: • 22 people (7%) of cohort had been to A&E in previous week • 46 (15%) in previous month, and 85 (28%) in previous year • However, not clear that all previous visits related to diagnosis
Questionnaires and interviews
Patient questionnaires • Based on a questionnaire developed by Amanda Ramirez and Lindsay Forbes at Kings College London, which was used as a follow-up tool with the 20% of patients who had not previously been to their GP on the National Cancer Patient Experience Survey. This will allow us to do some comparison of the findings with work at a national level • It is important that we have a sufficient response rate, in order to be able to: • Make robust comparisons between trusts and in many instances, for all cancers and between tumour groups within trusts • Understanding reasons for late presentation from patients perspective • Current Response rate (15%) much lower than Cancer Patient Experience Survey 2010/11 (45-68% local)
Question 4 – help seeking Did any of the following things put you off seeking help sooner? • I didn’t realise the problem or symptom was serious • I was too embarrassed • I was worried about wasting the doctor’s time • I was too worried about what the doctor would find • Something else….
Question 4 – help seeking - responses (n=44) Did any of the following things put you off seeking help sooner? • I didn’t realise the problem or symptom was serious – 45% • I was too embarrassed – 0% • I was worried about wasting the doctor’s time – 5% • I was too worried about what the doctor would find – 7% • Something else…. 43%
Non serious symptoms? 1 month of symptoms before seeking help: • “Difficulty in breathing and no appetite” • “ Pain in urinating. Pain in lower stomach. Swelling in stomach” • “severe breathing problems, dry cough for one month and inability to walk more than a few metres without gasping for breath.” 3 months before seeking help: • “swelling in right cheek and eye that came up quickly” 6 months before seeking help: • “ abdominal pain and vomiting” Not sure how long before seeking help • “ Very bad pain in left lower abdomen, present over several weeks but became unbearable - unable to keep fluids down”
Something else? N= 19 6 people said they were already seeing a health professional for problem 4 people had sought help (unsuccessfully?) Reasons given by people who waited over a year before seeking help: • “Burying head in the sand, hoping the problem would go away” • “I really don’t know why I put it off, my mum was treated successfully” • “I was afraid the doctor would tell me that I had cancer” Other reasons given: • “It’s never practical to get an appointment with a GP” • “It was Christmas and I had visitors ”
Question 9 - GP factors Did any of the following things put you off going to see your GP? N=32 • I didn’t realise the problem or symptom was serious (28%) • I was too embarrassed (0%) • I was worried about wasting the doctor’s time (0%) • I found my GP difficult to talk to (9%) • It was difficult to make an appointment to see the GP (13%) • I was too busy to find time to go to see my GP (3%) • I was too worried about what the doctor would find (3%) • Something else …. (44%)
Qualitative analysis plan • We want to understand the patients’ experience of an emergency route to cancer diagnosis in their own terms • We will be analysing the interviews using ‘thematic analysis’, in order to generate themes, which should be representative of what the participants said and meant which are normally supported by narrative description • We will be considering our data within the framework of the Andersen model of patient delay, which should help us to combine the quantitative and qualitative results • We will be paying particular attentions to ‘patient factors’ • We will also be investigating how emergency admission fits into the four stages of help-seeking: 1) appraisal; 2) help-seeking; 3) diagnostic; 4) pre-treatment.
Qualitative analysis plan – the Andersen model of patient delay mm
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