EGFR+ Patient Experience survey 2022
The EGFR+UK Patient Experience Survey of 2022 provides valuable insights into the experience of patients as they navigate the challenging path from early symptoms, through diagnosis to treatment and beyond.
Taken in the round, the picture that emerges in the 2022 survey, when compared with the survey that was undertaken in 2021, is of some modest progress for patients despite the much-reported challenges being experienced within the NHS.
Most notably, patients reported improvements in the early identification of disease and referral to specialist services as they passed through primary care. Disappointingly, these gains were somewhat offset by delays and inconsistencies in diagnosis and treatment provided by those specialist services in the acute sector. However, patients reported that all the key metrics of survivability – ‘Stage at which the patient was diagnosed’, ‘Time to diagnosis, ‘Spread of disease to other parts of the body’ and ‘Time living with lung cancer’ improved.
Purpose of the Survey
As well as directing the focus of the charity the outputs from the annual survey feed directly into our advocacy work. The data is used to bring evidence, colour and detail to our submissions to NICE and the Scottish Medicines Consortium where we are directly involved, as patient experts, in the process of gaining approval for new drugs and treatments.
We present at Pharma conferences, lung cancer and charity events, and represent EGFR+ patients on Advisory and Patient boards. Our credibility in these settings is our ability to evidence the reality of living with our disease. We do this through reference to this survey and other investigations, such as focus groups, that we carry out to ensure we drive home the patient’s real world experience of EGFR+ lung cancer. In essence to ensure we continue to be the voice for EGFR + patients that policymakers, regulators, researchers and the pharma industry listen to and respect.
Survey Design
This survey took place between the beginning of November and the middle of December 2022. The population invited to complete the survey was the EGFR+ UK Peer Support Group and 95 members of the group completed the survey.
15 new questions were included for the first time to add to our understanding of resources such as counselling available in UK hospitals, to throw more light on the diagnostic process and to capture more information about the patient’s perception of the usefulness of the services that we provide.
Overview of Results
Demographics
The average age at first diagnosis of respondents was 60 with a median age of 67. This is considerably older than in the 2021 survey where the corresponding figures were 57 and 62 respectively. 93% of respondents were 45 or more years old at diagnosis of EGFR+ lung cancer.
The demographic profile of respondents remains predominantly late middle-aged women of ‘white’ ethnicity living in England. Ethnic minorities and patients living in Wales and Northern Ireland are significantly under-represented. More effort needs to be made to reach out nationally to under-represented groups.
The proportion of respondents that reported to be a “Never Smoker”, rose again to 64% from 47% in 2020 and 59% in 2021.
42% of respondents reported that their cancer was diagnosed within the last 12 months, up from 31% in 2021.
20% of respondents reported that they have been living with lung cancer for more than 4 years since diagnosis.
Second opinion
Only 13% of patients sought a second opinion and only 10% transferred care during treatment, a fall of 33% and 40% respectively from 2021. This reducing rate may in part be due to 42% of respondents being in the first year of their treatment.
Hospital resources
The Cancer Nurse Specialist (CNS) is seen as a valued resource. 84% of respondents confirmed that they have a CNS, 94% of respondents reported that they had contacted their CNS and 92% of respondents reported that it was ‘Very Useful’ or ‘Somewhat Useful’ to have a CNS.
Hospital services such as counselling are not known to patients and where they do exist are significantly underused. The relatively low rates of usage of the counselling service may be related to the fact that 37% of respondents found the counselling service ‘Difficult’ or ‘Somewhat Difficult’ to access.
Diagnosis
41% of respondents reported that their diagnosis emerged as a consequence of investigation of another condition (Emergency admission to A&E or Incidental investigation), broadly similar to 2021.
In 2022 only 1% were diagnosed as a result of routine Lung Cancer Screening, a fall from an already low base of 3% in 2021. Sadly the new LC screening programme is unlikely to raise this figure as most of our members do not meet the criteria for screening.
23% of respondents reported experiencing no symptoms prior to diagnosis, up by a half since 2021.
Of those who reported symptoms prior to diagnosis, 26% reported a cough and a further 25% reported breathlessness/tight chest, these remain the strongest tell-tale signs.
46% of respondents reported experiencing pain in either the back, shoulder or chest.
Time to diagnosis
Respondents reported that they experienced symptoms on average for 63 days before visiting a GP, down significantly from the 96 days reported in the 2021 survey. This suggests, that even with the pressures on GPs, patients are seeking medical advice earlier.
The average time between the first visit to the GP and patient’s initial diagnosis has increased significantly from 97 days in 2021 to 121 days in 2022. There is some evidence to support the view that this is due to delays in the acute care sector rather than general practice.
Respondents reported a gap of more than 4 months between their first GP visit and an initial lung cancer diagnosis, up from an average of 3.2 months in 2021.
Respondents reported an average of a further 5 week gap between initial diagnosis and identification of their EGFR+ status.
Stage at Diagnosis
42% of respondents reported that their cancer was diagnosed within the last 12 months, up from 31% in 2021.
17% of respondents reported that their cancer was diagnosed at Stage 1 and 2 compared with 10% in 2021 and just 6% in 2020. This is a very significant and positive shift.
67% of respondents reported that their cancer was diagnosed at Stage 4, compared with the 84% reported in the 2020 and 2021 surveys.
At diagnosis or shortly after, 11% of respondents reported ‘No spread’ to other parts of their body. Almost twice the level in the 2021 survey. Of those who had spread, they reported an average 28% reduction in spread across EVERY part of the body when compared with 2021 survey respondents.
More respondents to this survey reported being diagnosed at an earlier stage than in previous years and are therefore more likely to have a positive outcome. This requires more investigation but could have been influenced by public awareness activity that encourages people with symptoms to go to their GP and the See Through The Symptoms campaign, aimed at GPs and local Health Care Professionals, that we ran in 2021 and 2022.
Treatment
61% of respondents reported that they had never had surgery to remove a cancer, 70% had never had radiotherapy and 76% had never had chemotherapy. These results may reflect that just under half of the respondents are in the early phase of their treatment.
85% of respondents are taking a TKI, of which 88% are taking Osimertinib.
31% of respondents reported that their cancer had progressed.
Routine monitoring
91% of respondents reported that they received regular routine CT scans. Just 6% of patients reported that don’t receive routine CT scans, virtually unchanged from the 2021 survey.
84% of respondents receiving routine scans every 3 months.
Only 20% of respondents reported that they received the results of their CT scan within 7 days, down from 30% in 2021. The average wait to receive the results of a scan was 14 days, up from 13 days in 2021.
Availability of brain MRIs remains an area of inconsistency within the NHS. 43% receive routine brain MRIs, 49% of them receiving them every 3 months.
The average wait between routine brain MRIs was reported to be 100 days, up significantly from 75 days in 2021.
Of those respondents who do not receive regular brain MRI scans 67% reported that ‘there had been no mention of brain MRI’. This is in line with our findings in 2021.
Access to regular brain MRI scans is a concern. It is known that this disease often metastasises to the brain. There is currently no nationally accepted standard of care in this area, and even though Osimertinib provides good CNS protection, a patient’s brain needs to be regularly monitored to catch any cancerous activity early. It is pleasing to see that even with the pressure on CT scanners due to machine capacity and shortage of Radiologists, nearly all patients receive regular CT scans however, there is still unacceptable variability in the speed with which the patient receives the results.
Mental Health
The mental health of patients (as measured narrowly by reference to depression, anxiety and insomnia) is broadly in line with norms in the wider population as a whole.
40% of respondents reported that their hospital offered a counselling service, down 5% on 2021. A further 48% reported that they didn’t know whether their hospital offered a counselling service, up 7% since 2021. This suggests continuing problems getting the message of the service out to patients. Only 17% of respondents reported that they used the hospital counselling service.
29% received counselling form another source.
EGFR+ support group
The percentage of respondents who learned of EGFR+ UK via Social Media fell from 29% in 2020 to 24% in 2021 and 18% in 2022.
41% of respondents reported that they ‘found’ EGFR+UK through a search engine compared with 37% in 2021 and 25% in 2020. There is a clear need for us to improve our activity and reach via digital marketing
15% learnt of the group from their CNS. Nurses remain an important and growing source of referrals with a great potential to do more.
Not surprisingly only 1% found the group via a leaflet in the hospital.
82% of respondents noted that they felt better informed as a result of their membership of the EGFR+UK Facebook Support group and 68% reported that they ‘feel inspired and encouraged’.
Only 48% reported that it helped them to cope with day-to-day life, suggesting that opportunities might exist to increase the amount of practical advice about living with lung cancer.
77% said they would recommend the group to others.