Organised ‘call and recall’ cervical screening should be reinstated — Flannelly
Opportunistic cervical cancer screening was not cost-effective and capacity planning and quality assurance was difficult, the Gathering Around Cancer was told by the former CervicalCheck Clinical Director. The two-day annual meeting took place on November 8 and 9 at Croke Park, Dublin.
Prof Gráinne Flannelly, St Vincent’s University Hospital, Dublin, said that organised “call and recall” should now be restored to allow the Programme “to balance and stabilise”.
She said that organised screening programmes work, but screening had limitations and it was a “constant challenge to get those limitations across”. However, Prof Flannelly added that CervicalCheck had been effective in reducing the rates of cervical cancer in Ireland.
She said that introducing HPV testing would need managed changes to all aspects of the service and that inclusive, careful planning would be crucial to ongoing success.
Prof Flannelly added that care for the welfare of patients should be at the heart of practice, adding that it was good to see progress occuring during what has been a “quite difficult year” for CervicalCheck.
Cervical cancer is the ninth-most frequently-diagnosed cancer in women in Ireland and the trends in mortality had been increasing since 1978. It was the twelfth-most common cause of cancer death in women, with 46 years of age being the average age of diagnosis and 56 years the average age of death.
While in comparison to other countries Ireland had relatively more cervical cancers, the reason for this was due to the later establishment of important cancer prevention services.
“We forget in 2018 that in 2007, we didn’t have a cervical screening programme and we didn’t have a HPV vaccination programme. Our cervical cancer rates were nothing to be proud of,” she explained. “Women had smear tests after they had babies. When they stopped having babies, they stopped having smear tests.”
She also stressed the importance of the vaccination against the HPV virus, saying CervicalCheck and the vaccination programme were two sides of the same coin.
“The vaccination programme’s graduates are actually coming into the screening programme population this year and that will change the game completely. Because once you change the aspects of the population, you have to adjust the programme, or else you end up not achieving what you are seeking to achieve, which is trying to identify women who might have precancerous changes on their cervix.”
CervicalCheck celebrated its tenth anniversary in September of this year. Prof Flannelly stated it was achieving its target of 80 per cent coverage of the population and other countries were asking how Ireland achieved these impressive rates.
“On balance, about a third of the country’s 1.2 million women should be screened every year,” according to the professor. “That’s how you plan your capacity from a laboratory perspective and from a colposcopy perspective, to be able to meet the standards of waiting times per results and waiting times for diagnoses and treatment.”
She highlighted that women over the age of 50 were much less likely to be up-to-date in their screening, but that 86 per cent of the country’s 25-to-29 year-olds were up-to-date, which was the complete opposite to the UK.
According to the NCRI’s Cancer Trends 2017, cervical cancer incidence rates were falling and the vast majority of cancers detected by screening were micro-invasive (stage 1a), meaning that people could be treated and their fertility could be preserved. In terms of areas of improvement, rates of adenocarcinomas of the cervix were still rising, and Irish cervical cancer rates were still much higher than other countries.
While there may have been a “crisis of confidence” in the programme in 2018, a national satisfaction survey from last year indicated that patients were happy with CervicalCheck colposcopy services — 98 per cent felt they had enough privacy; 96 per cent felt they had been given enough explanation; and 99 per cent said they had confidence in the staff. Eighty-three per cent of people rated the care as excellent, and 16 per cent as good.
The vast majority of appointments for colposcopy, 97 per cent, occurred within eight weeks, and an estimated 65,000 cases of high-grade precancerous changes had been identified in the first 10 years.
She said that there was a time to change the test and cautioned that given the advent of the HPV vaccination programme, “cervical screening as a cytology test does not work as well”.
Planned changes to the Programme included extending the upper screening age to 65 years and changing the primary screening test to HPV.
HPV testing was more sensitive and detects more high-grade CIN when compared with cytology. It was more protective for longer periods and it was safe to prolong screening intervals if the HPV result was negative, said Prof Flannelly, adding that the HPV test was very good for the vaccinated cohort.
However, any potential change to CervicalCheck had to be planned, as “every time you change a test, you change every single thing that happens down the way.”
Responding to questions from the audience, Prof Flannelly said that stressing the cost benefit of screening as opposed to buying expensive drugs had convinced decision-makers in Government to support such programmes.
She also was praised at the conference by her colleagues, who said she was known for her compassion, dedication and advocacy for women’s health issues.
Multi-million euro payouts undermine effective population-based cancer screening programmes
In order to have effective population-based cancer screening programmes, it is not possible to have multi-million euro payouts for false-negatives or false-positive results, the Irish Cancer Society (ICS) said at the recent Gathering Around Cancer meeting.
Head of Services and Strategic Implementation at the Society Mr Donal Buggy said that population-based cancer screening programmes saved lives, but that they were not designed to diagnose cancers. Improving the population’s understanding about screening would be key to ensuring we have robust screening programmes into the future, he added.
Using the right language about screening programmes is vitally important and this had been a challenge over the last six months in relation to the CervicalCheck controversy, he said.
“We have this language that has developed around cancer over the last 40, 50 years and is it still appropriate?” he asked. “We hear about ‘fighting’ cancer, and ‘beating’ cancer. For many people who have metastatic cancer now, they are living with cancer rather than fighting and beating cancer.”
The common misconceptions needed to be challenged and he pointed to some flawed headlines in the media regarding CervicalCheck.
“There is still confusion; there isn’t a clear picture about what has happened,” Mr Buggy said. This had allowed space for misinformation to confuse the issue.
“It’s a question for all of us in this room; it’s a question for the Irish Cancer Society.”
Having met with many of the people directly affected by the controversy, he acknowledged that they were very angry about the language used by clinicians that emerged in the Scally report.
“They face very similar challenges to prostate, breast, and colorectal cancer patients. They face the same challenges in terms of access to reliable information, access to post-treatment, psychological supports and counselling, post-fertility issues and clinical trial options,” he said.
“Where these patients see themselves as different is, they feel very let down by the State. However, it is important to say that despite that, they do very much remain strong advocates for screening and strong advocates for vaccinations.”
He said that patients wanted to be involved and engaged, and this was being recognised by the Department of Health and the research community.
“At the moment, the Department of Health has a cancer patient advisory committee; it has asked for expressions of interest and the selection is ongoing. The hope is, this patient advisory committee will be part of the conversation in relation to the development of cancer policy,” Mr Buggy said.
“We are seeing patients become part of the infrastructure of policy development. I think that will improve patient understanding of how programmes are developed and what screening is. I think that is a good thing; it’s something not to be afraid of.”
In an environment where there was so much information and misinformation available, there was an obligation to try to engage with patients, the patient community and their advocates to ensure that they have the best possible information, he concluded.
Earlier, the meeting heard from ICS CEO Averil Power, when she thanked the oncology community for its contribution to the “incredible progress” that has taken place in cancer care in Ireland.
“We have gone from three out of 10 patients surviving cancer diagnosis 30 years ago, it six out of 10 now,” she said.
She added that the medical community had always been part of the DNA of the Society. The ICS was established by a physician and the medical members of the board offered a unique insight “that influences our organisation and shapes our priorities”.
This was a relationship she was anxious to further develop, she said, as “it is in the interest of the patients we serve and advocate for”.
Since 2010, the ICS had invested more than €25 million in research projects, and was the largest voluntary funder of research in the country. This research had made over 700 new findings over the past 30 years.
Its initial €7.5 million investment in Breast-Predict helped leverage another €40 million from academia and industry, and this “has made a massive difference to patients affected by breast cancer”. It also put €1 million into BowelScreen to make sure it got off the ground.
As well as supporting the development of national cancer centres and the smoking ban, the ICS was a proponent of plain packaging for cigarettes and argued for the implementation of a resourced Sláintecare.
However, lack of awareness of its services continued to be a challenge.
“It breaks my heart when I meet a patient or their family who has been through cancer and struggled with an issue that we could have helped with,” she said.
She acknowledged that the fund-raising environment in general had become more challenging in recent years, especially as the ICS was 98 per cent funded by donations. Fortunately, the Society remained the most trusted charity in Ireland, with strong medical and financial oversight, she added.
In terms of future improvements, while the UK’s MacMillan Cancer Trust piloted initiatives which were then taken up by the NHS, this had not been the case in Ireland. However, it was something the Society wanted to see replicated “so that we can drive the next initiative,” Ms Power said. “I think it’s about trying to get to a model where you have proper State support, but also leveraging the passion and commitment of volunteers to make the service stronger.”
Adolescents and young adult cancer patients have worse outcomes
A fully-developed and staffed adolescent and young adult (AYA) oncology network would be better for patients and could help lead to better outcomes, the Gathering Around Cancer meeting heard.
Speaking about the future of AYA oncology, Dr Scheryll Alken, of St James’s Hospital and Crumlin Hospital, Dublin, said AYA had different definitions.
However, for the purposes of her talk, she placed the AYA age group at 16-to-24 year-olds. While there had been much literature written about it, AYA was not a new specialty.
AYA patients were diagnosed with three distinct types of tumours — paediatric tumours; tumours more common or specific to adolescence, such as liquid malignancies, CNS tumours, and sarcomas; and adult tumours. However, the care in both paediatric, where the parent is at the centre of the decision making process, and adult oncology was different than in AYA.
“Whereas the parent and the partner have a very important role to play in AYA, to support these patients, we require an extensive MDT [multidisciplinary team] input, of not only nurses and dietitians, but also social workers, fertility experts and education experts,” said Dr Alken, adding that the AYA group was very complex and diverse.
“Cancer is the second-leading cause of death in this population group, after accidental injury. There is progress to make because they are a relatively understudied population,” she said.
The group’s survival improvement rates lagged behind those of paediatric and older adults. In terms of lymphoid leukaemia, from 1994 to 2003, the relative survival rates for paediatric patients was 82 per cent, but only 53 per cent in the AYA group.
“Thankfully, that has been corrected over the 10-year time period, with a change in the treatment strategies for these patients,” Dr Alken said. However, in osteosarcomas or Ewing sarcoma, the survival figures were not as positive, with the same improvements not being observed.
“In soft tissue sarcoma, while the numbers are very small, you are twice as likely to die if you are an AYA patient than if you are a paediatric patient.”
Explaining the reasons behind this, she said it was known that the biology was different for these patients. They also do not participate in clinical trials to the same extent, with only nine of the 58 adult trials listed on the Cancer Trials Ireland website permitting those aged 16-to-18 years.
However, she praised her paediatric colleagues for enrolling patients in clinical trials, saying that approximately 75-to-80 per cent of all patients in Crumlin were enrolled in clinical trials as part of their treatment.
She also stressed that age-appropriate facilities were very important for AYA patients.
“What we need for AYA patients are age-appropriate facilities; this allows focused care for complex patients with a concentration of expertise and would allow us to improve access to clinical trials,” she continued.
“The best international example is the Teenage Cancer Trust, which has over 30 dedicated units throughout the UK, with dedicated inpatient space and very often, outpatient space.”
This physical space meant that dedicated peer support could develop, which is “hugely important at this time in a patient’s life and also ensures that the full MDT is available”.
“These facilities are not currently available in paediatric or adult oncology in Ireland,” she added.
Over the last 20 years, there have been 3,300 AYA patients, with a significant portion surviving. This placed ongoing survivorship care on the healthcare system and oncology clinics.
“We know that if the patients get to five-year survival, it is likely to translate to long-term survival,” she outlined. These patients also have a 13.9 per cent risk of second malignant neoplasm after five years.
“But we have no formal national network. Almost two-thirds of us are seeing AYA patients regularly in our clinics. We are making some efforts to make special arrangements, including developing specific spaces, liaising with MDTs, but also adjusting time to clinics, indicating that we know that the current set-up for these patients is suboptimal.”
The recent survey of Irish cancer care providers she referenced showed that 64 per cent of respondents reported regularly seeing AYA patients and 39 per cent reported making special arrangements.
Turning to the future of AYA oncology, Dr Alken commended the National Cancer Strategy for making a special place for AYA oncology.
“The strategy spoke about the creation of an AYA cancer network. It centres around creating a dedicated space which is appropriately staffed and is accessible to these patients,” she told the meeting.
It was proposed to establish the model following the paediatric example, with four centres in a hub-and-spoke model.
One of the centres would be associated with the new National Children’s Hospital, and have joint appointments of AYA haematology oncologists and oncologists, advanced nurse practitioners, psychologists and other MDT members.
As part of this, there would also be the development of a national cancer survivorship programme. This has already begun to be developed through Crumlin Hospital. These developments would help allow for a smoother transition of patients to adult services, where required.
In terms of research focus, she identified improving fertility preservation and improving treatment for those patients with lower survivor rates.
“How are we going to do this? Age barriers to clinical trials are a major issue for the AYA population — 18 years is an arbitrary cut-off age from a biological perspective,” she outlined. “Both the MHRA in the UK and the FDA have advised the reduction of the age limit for some clinical trials.”
The co-location of oncology units would also enhance the availability of accessing trials for these patients.
AYA patients were also under-represented in tumour banks because they were under-represented in clinical trials. As a consequence, there was far less translational research available on the AYA patient group compared to any other.
“Improved clinical trial participation will increase this and maximise existing tumour biobanks, which will involve collaboration across international networks,” Dr Alken told the conference.
One of the big questions for the AYA population concerns the role of genomics. Approximately 10 per cent of patients are expected to harbour a pathogenic germline variant, she said, cautioning that this data came from an adult population rather than a specific AYA study.
“And the somatic mutation rate is less clear,” she said.
Research had also shown that 31 per cent of AYA patients would have been eligible for germline testing under current guidelines and 66 per cent had an actionable mutation at the time of assessment.
Dr Alken called for the appointment of a national lead for AYA oncology, and for an AYA network to be fully developed and staffed. The lower age limits for clinical trials should be reduced where appropriate and translational research in the subgroup should be encouraged. Training for physicians, nurses and AHP colleagues should also be provided.
When asked what was the ideal training model for a person interested in this group, Dr Alken replied staff would come from both adult and paediatric oncology. Approximately 50 per cent of cancers seen in AYA were also seen in adult oncology but were not really seen in paediatrics, she said.
“So I do think that having a grounding in adult oncology is most important from that perspective.”
Medical professionals within a cancer care team are the most vulnerable to burnout
Recruitment and retention problems are real and the medical community needs people to listen, the recent Gathering Around Cancer heard.
Dean of the Faculty of Occupational Medicine at the RCPI Prof Blánaid Hayes gave a talk on the global experience of burnout in oncology at the event.
The links between work and health have been well established, she told the conference, and work with excessive demands, coupled with low support and low levels of control, have a negative impact on health. She added that this type of negative psychosocial environment in work was associated with depression and other common mental disorders (CMDs).
Quoting the Head of Thought Leadership at the King’s Fund, London, UK, Mr Michael West, Prof Hayes said that the deeply disturbing “paradox at the heart of the health service is that we are damaging and killing the very people who are committing their working lives to caring for the health and wellbeing of other people”.
“For you who are working in cancer, I can only imagine the type of demands that you have, the demands that come from patient care, dealing with relatives, families, demands around access to treatment, and the huge growth in knowledge,” she said.
There was also the growing burden of cancer to contend with. While rates may be stabilising and survival rates continued to improve, the number of diagnoses continued to rise with the ageing and growing population. Cancer is also the second-most common cause of death in Ireland, she said.
Burnout was first reported in the 1970s and was increasingly reported as a phenomenon of the modern workplace environment. It is caused by chronic occupational stress and has three criteria — emotional exhaustion (EE), depersonalisation, and reduced personal accomplishment.
She described depersonalisation as a person changing from being passionate and very engaged, “to moving into a space where you become cynical about care”. It is a breakdown in the ability to care, characterised by emerging cynicism and disengagement from the human service component of work.
The third symptom — reduced personal accomplishment — sees reduced output across all areas of life, and all criteria occur in a previously highly-engaged and functioning person for whom they are uncharacteristic. “The important thing to say about burnout is, you have to have been ‘on fire’ to get burnt out,” she commented.
Furthermore, people close to the individual experiencing burnout, such as family, friends and members of a workplace team, also suffer.
Prof Hayes pointed to numerous studies that showed that burnout led to reduced productivity and patient satisfaction, higher physician turnover and higher absenteeism. Worryingly, there was also increased suicidal ideation and correlation with depression.
In terms of international studies around burnout, most used the Maslach Burnout Inventory, which was a well-recognised standard of measurement. However, there were other standards used and there was much variation in how burnout was defined, leading to inflated levels, she said.
“You’ll find in a lot of papers, people will quote the levels of emotional exhaustion and they’ll call that ‘burnout’,” she said.
However, in their study, RCPI researchers used emotional exhaustion and one other criteria (the EE+1 rule), which was a more rigorous approach, Prof Hayes explained.
“You are not comparing like with like when you are comparing the different studies that use these measurements in different ways,” she warned.
Risk factors for burnout have included female gender, younger age, longer working hours and low job satisfaction, although the RCPI research found that males were more likely to suffer from the condition, which may have something to do with the changing roles within society, Prof Hayes suggested.
A Brazilian study, published earlier this year, examining a small group of doctors found that burnout was less evident in those with higher frequency of leisure activities. It also found that 58 per cent of respondents were burnt-out, but used a looser definition of anybody with either EE or depersonalisation.
A 2010 French study, also using these looser criteria, found that those with burnout were more likely to quit or change specialty.
“That has huge implications for your specialty. Highly-trained people; you can’t afford to lose any of them,” Prof Hayes remarked. The study also found that 20 per cent of the responding doctors were taking hypnotics/anxiolytics regularly, 88 per cent were self-prescribing, and 2 per cent were taking antidepressants.
Research from Canada of more than 1,000 cancer care workers found that medical oncologists were statistically more likely to have emotional exhaustion and depersonalisation than allied health professionals and support workers.
“Much of the data you look at would suggest that the medical professionals within a cancer care team are most vulnerable to burnout,” Prof Hayes said.
Her own research of Irish doctors, published last summer in the BMJ, found that one-in-three suffered from burnout. Of the 1,749 who met the inclusion criteria, 52.3 per cent reported emotional exhaustion, depersonalisation was reported in 28 per cent, and 34 per cent reported low personal accomplishment.
Consultants were less likely to experience burnout but BSTs [doctors in Basic Specialist Training] were the worst off across all the wellbeing variables, “which suggests that we have a real problem with our SHOs [senior house officers], our BSTs”.
Among its positives, the study revealed that seven out of 10 respondents said they still had a desire to practice. If that passion could be encouraged, Prof Hayes argued more positive changes could take place, even if changes were certainly required.
“We must ensure that individual cancer care professionals are adequately trained, and that the multidisciplinary teams are able to work effectively. It is fundamental to any solution that aims to protect the mental health of workers on the team,” the meeting heard.
In terms of interventions, the literature stated organisational interventions were more effective but individual interventions, such as mindfulness-based stress reduction, CBT, etc, have a role to play.
She called for future research to further establish the links among physician burnout, wellbeing and healthcare outcomes. This would also estimate the economic cost of physician burnout and build alliances to address it.
Using common metrics and the development of a comprehensive framework for interventions with individuals and organisational components was also highlighted.
Carrying out research in this area was important, as facts were brought into the public realm, the meeting heard.
“We know that we are trying to do far too much with too little,” Prof Hayes said. “The figures of emotional exhaustion in this group of doctors (in the Irish study) is higher than in any other published study that I have come across in the global literature. So I think we have a big problem.”
As the survey was taken at the height of the cutbacks in health in 2014, she said that when the study is repeated, hopefully next year, an improvement may be found.
Responding to a question, Prof Hayes said that recruitment and retention problems were real “and we need people to listen”.
Obesity and cancer discussed at Gathering
A discussion on obesity, dieting and weight loss in cancer formed part of this year’s two-day Gathering Around Cancer.
Professor of Clinical Surgery, Prof John Reynolds, St James’s Hospital, Dublin, gave a presentation on obesity and cancer, where he indicated that 20 per cent of the patients attending his clinic were obese and that many had fatty livers, hypertension and metabolic syndrome.
Globally, these presentations were increasingly common. Approximately 11 per cent of males and 15 per cent of women are obese, totalling 650 million adults and 110 million children.
As part of his talk, he highlighted the seminal 2003 study ‘Overweight, Obesity and Mortality from Cancer in a Prospectively Studied Cohort of US Adults’, published in the NEJM, which looked at 900,000 US adults who were free of cancer at enrolment in 1982. In this group, there were 57,145 deaths from cancer during 16 years of follow-up.
The authors concluded that obesity may be responsible for 14 per cent of cancer deaths in men and 20 per cent in women; however, Prof Reynolds suggested that this may be an overestimation.
In terms of obesity associated cancer, a number of GI cancers were associated with it, with oesophageal adenocarcinoma being perhaps the best example.
He added that obesity, which he described as a huge, multifaceted issue, was inextricably linked to type 2 diabetes and posed the question about whether the cancer risk was impacted if the diabetes or metabolic syndrome was treated.
“Many of the interventions for morbid obesity in patients with type 2 diabetes cure the diabetes and do it very, very quickly,” he said. Reviews of patients who have undergone bariatric surgery suggested that it has an anti-cancer effect.
While tobacco use was responsible for an estimated 1.8 million cancer deaths per year, 60 per cent of which occur in low- and middle-income countries, being overweight, obese or physically inactive were together responsible for 274,000 cancer deaths per year.
“It is a serious public health issue that needs serious attention,” he said.
Harmful alcohol use was responsible for 351,000 deaths per year, sexually-transmitted HPV infections for 235,000 cancer deaths, and occupational carcinogens responsible for at least 152,000 cancer deaths per year.
Concluding his talk, he posed a number of questions, such as whether metabolic surgery decreases the risk of cancer in patients with obesity and pre-malignant risk or genetic risk. He also asked why are there major gender differences in some obesity-associated cancers.
In his talk on diet and weight loss in cancer, Radiation Oncologist Prof Frank Sullivan, NUI Galway, said that often, doctors ask people to increase their food intake “against the ‘rainy day’ of chemotherapy and surgery. We rarely tell them to decrease their food intake”.
He highlighted the plethora of diets available with unproven claims and that many vulnerable cancer patients were trying them. Oncologists needed to regard obesity as part of their profession, he told the meeting, and there was amazing commonality of risk factors across all illnesses.
“Forty per cent of our patients are obese and as patients progress, many of them become quite cachectic, fatigued and energy-impaired,” he said. He also highlighted that treatments such as the use of steroids and ADT can make patients diabetic.
However, Prof Sullivan also pointed to research that indicated that a combination of chemotherapy and fasting promotes cancer-free survival in mice.
“There appears to be a differential response between normal cells and malignant cells to reducing food (intake). Normal cells go into a hibernative, protective state but cancer cells seem to become more sensitive to the effects of our cancer therapy.”
Concluding his talk, he suggested the oncology community look at exercise, nutrition and stress reduction, and called for more research into this area.