LUGANO, Switzerland; DENVER, CO, USA – More than one in 10 patients with lung cancer do not know what type of tumour they have, according to data from a 17-country study carried out by the Global Lung Cancer Coalition (GLCC) to be presented at the European Lung Cancer Conference (ELCC). (1) Nearly one in five patients surveyed did not feel involved in decisions about their treatment and care, and a similar proportion felt that they had never or only sometimes been treated with dignity and respect by those treating them.
“I was shocked that some people didn’t know what type of lung cancer they had because, if they didn’t have that information, how could they understand their treatment options for making decisions about their care?” said Vanessa Beattie from the GLCC. “Receiving a diagnosis of lung cancer is devastating and it’s crucial that patients receive good quality information from the start so they are empowered to make informed decisions about their treatment. At diagnosis, they should be offered information – written or in another form – about their type and stage of cancer and a potential treatment plan which they can discuss with their cancer team and their family.”
Of 907 patients with lung cancer who responded to the survey carried out in January 2020, 574 (63%) were from Europe. Of European respondents, 11% did not know what type of lung cancer they had (13% globally), 19% did not feel involved in decisions about their treatment and care (18% globally), and 11% felt they had ‘never’ or only ‘sometimes’ been treated with dignity and respect by their treatment team (9% globally).
Beattie suggested that, while cancers services may vary across Europe and globally, clinicians need to keep challenging themselves to drive improvements in lung cancer care and engage with patients to address their individual needs.
“There is still a stigma attached to lung cancer because of its links with smoking, but every patient should be treated with dignity and respect at all times and have a positive experience of care wherever they are treated, including opportunities to talk about their concerns,” said Beattie.
Language differences and the increasing complexity of treatments for lung cancer can make it difficult for patients to communicate with their medical team and this may jeopardise not only their care but also recent progress in patient empowerment.
A second study to be presented at ELCC highlights the significant need for interpreters at cancer clinics. Between November 2017 and December 2020, 242 referrals for interpreters speaking a total of 24 languages were arranged at a major hospital in Ireland.(2) The majority were for patients from Central and Eastern Europe and the number of interpreter requests ranged from 0-18 per patient. The significant number of referrals reflect the fact that one in six people resident in Ireland were born abroad, and three quarters of these speak their primary language at home, with 20% of those aged 65 and over having little or no English.(3)
“A lack of patient understanding of their disease is a major issue especially for those with lung cancer as there have been a lot of recent advances in targeted therapies which patients take at home rather than in hospital. If there is a language barrier, patients may miss appointments or take their medicines incorrectly which can affect their prognosis and quality of life,” said lead investigator, Dr Tianna Martin, from Beaumont Hospital, Dublin, Ireland.
She pointed out how easily misunderstandings can occur and stressed the importance of asking patients their preferred language especially when they come from countries where multiple languages are spoken.
“It’s really heart-breaking to see a patient who appeared to understand their diagnosis and treatment become deeply distressed weeks or months later when they finally realise they have cancer,” she said.
Martin suggested that records of patients with language needs should be flagged ‘at risk’ so that clinicians check carefully to ensure that appropriate translation services are in place. She also proposed that, given the growing complexity of lung cancer treatments, specialised training should be given to interpreters at cancer clinics.
“It is important that interpreters can accurately explain the diagnosis and treatment options at all stages of the disease so that patients can make really informed decisions and, with the rise in virtual consultations as a result of COVID-19, we need to work out the best approach for overcoming language barriers in that setting too,” she concluded.
Commenting on the findings of the two studies, Professor Sanjay Popat, from the Royal Marsden NHS Foundation Trust, London, UK, said that the results should be a wake-up call to all healthcare professionals involved in the care of patients with lung and other cancers to get processes in place to ensure effective communication.
“The statistics from the GLCC survey paint a bleak picture and at least 11% of patients not knowing their type of lung cancer is a very damning statistic. We want patients to be empowered to make decisions about how and where they want to be treated and that can only happen if we have good communication at all stages, with shared aims and goals,” he said.
“If we can’t get the basics right, it will be very difficult to ensure that patients understand the increasingly complex issues about their treatment options and possible side-effects, particularly the ‘red flag’ side-effects they need to tell us about immediately,” he added.
Popat pointed out that the Dublin research underlines the need for experienced medical translators in an increasingly cosmopolitan society and the importance of 24/7 professional services, especially for patients being treated in hospital.
“The key thing is for everyone to know these translation services exist and to make use of them. Relying on family members to translate is not good practice. We need translators who know how to talk about difficult subjects such as prognosis and end of life care, and can help us understand cultural sensitivities so that we give information in an appropriate way,” said Popat.
For patients with lung cancer facing communication or language barriers he highlighted the growing range of patient support groups specialising in providing information and support for specific types of the disease, such as ALK+ and EGFR mutation-positive non-small cell lung cancers.
“In many countries these specialist groups are becoming established to provide a lot of background information about these specific types of lung cancer and the kind of questions patients need to ask and what they should be expecting as part of their care. It all helps to ensure that communication about complex issues is as good as it can be in what is likely to be a very stressful situation for patients,” Popat concluded.
This press release contains information provided by the author of the highlighted abstract and reflects the content of this abstract. It does not necessarily reflect the views or opinions of the ELCC organisers who cannot be held responsible for the accuracy of the data. Commentators quoted in the press release are required to comply with the ESMO Declaration of Interests policy and the ESMO Code of Conduct.
- Abstract 209P_PR ‘Understanding patient experience in Europe: the first Global Lung Cancer Coalition Patient Experience Survey’ will be available as e-poster from 24 March at 12:00 CET. Journal of Thoracic Oncology, Volume 16, Number 4S, Supplement, April 2021
- Abstract 212P_PR ‘Language and Understanding: the complexity of insight in cancer care’ will be available as e-poster from 24 March at 12:00 CET. Journal of Thoracic Oncology, Volume 16, Number 4S, Supplement, April 2021
- “Census 2016 Summary Results – Part 1 – CSO – Central Statistics Office”. www.cso.ie.
209P_PR – Understanding patient experience in Europe: the first Global Lung Cancer Coalition Patient Experience Survey
V. Beattie1, W. Boerckel2, M. Rigney3, K. O’Hagan4, M. Hennink5, J. Fox6
1Lung Cancer Nursing UK, Solihull, UK, 2Cancer Care, New York, USA, 3GO2Foundation, Washington, WA, USA, 4Irish Cancer Society, Dublin, Ireland, 5Patient, Netherlands, 6Roy Castle Lung Cancer Foundation, Liverpool, UK
Background: Little comparative European or global data exists on lung cancer patient experience. The Global Lung Cancer Coalition (GLCC), a partnership of 40 patient organisations across 29 nations, wanted to understand the experiences of lung cancer patients, identifying common themes and differences between countries. The GLCC therefore used its member networks to run a multi-national online survey of patients – the first time this had been attempted.
Methods: The GLCC convened a steering group with members from the UK, Ireland, and the Netherlands, including patients, clinicians and advocates. 10 questions were agreed and translated into multiple languages with appropriate terminology. As well as demographic questions, participants were asked what treatments they had received, whether they felt involved in decisions and were treated with dignity and respect, and how they describe themselves. The survey was distributed by GLCC members via emails, newsletters and social media. The results were collated and analysed by the steering group. The GLCC produced a global report with findings for all participating countries, as well as bespoke briefings comparing the perspectives of patients in each country to those of global respondents, for national campaigning.
Results: Nine of the 17 countries that took part are in Europe: Bulgaria, Czech Republic, Denmark, Ireland, Netherlands, Portugal, Spain, Sweden and the UK. 574 of 907 patients who responded were from Europe (63%). Headline European findings include: 11% of respondents did not know what type of lung cancer they had (13% globally) 19% of respondents stated they did not feel involved in decisions about their treatment and care (18% globally) 11% felt they had ‘never’ or only ‘sometimes’ been treated with dignity and respect by their treatment team (9% globally)
Conclusions: The survey demonstrates that a pan-European patient experience survey can take place. It also suggests more could be done across nations to improve lung cancer patients’ experience, particularly involvement in decisions around treatment and care. We are grateful to all the patients who responded and shared their experiences.
Editorial acknowledgement: The abstract was written by Incisive Health as policy and communications experts. All editoral control was retained by the authors.
Legal entity responsible for the study: The authors
Funding: The Global Lung Cancer Coalition (GLCC) receives funding for its work from Amgen, Astra Zeneca, Boehringer Ingelheim, Bristol-Myers Squibb, Eli Lilly, Merck, Novartis, Pfizer, Roche and Takeda Oncology
Disclosure: All authors have declared no conflicts of interest.
212P_PR – Language and Understanding: the complexity of insight in cancer care
T. Martin1, D. O’Doherty1, C. Mattisa1, T. Byrne1, R. Keogh1, C. Murphy1, P. Bredin1, S. Devanney1, P.G. Morris1, B. Hennessy1, L. Grogan1, O.S. Breathnach2, R. O’Dwyer1
1Medical Oncology, Beaumont Hospital, Dublin, Ireland, 2Beaumont Hospital, Dublin, Ireland
Background: Globalisation has led to an increase in immigration as some pursue the potential for a more financially secure life away from their country of birth. This leads to an increase in a nation’s linguistic diversity. In Ireland one of the official languages is English and the prevalence of fluency in other languages within the Irish-born population is modest. We sought to assess language challenges within our patients with limited English proficiency to gain insight into the distribution of languages and social circumstances of this population, as well as patterns of use of formal interpreter services.
Methods: Data was obtained from the formal interpreter service and from the coordinating social workers to identify patients with limited English proficiency. Inclusion was based on documented evidence of limited English proficiency in medical oncology patients. Included patients had data collected on diagnosis, treatment regimen, primary language, use of interpreter services, and social circumstances. Population data was from the 2016 Irish Census.
Results: 242 interpreter referrals were arranged from Nov. 2017 to Dec. 2020. Screening included 102 patients of which 26 were excluded as the level of English proficiency was not documented or they did not attend the Oncology Service. The number of interpreter requests ranged from 0 to 18 per patient. The top languages were: Russian (18%), Lithuanian (11%), Romanian (10%), Polish (9%). The population of Ireland measured 4,761,865 in 2016. “Foreign born” residents account for 17% of the Irish population; this group mainly come from Mid / Eastern Europe (Polish: 122,515; UK: 103,113; Lithuanian: 36,522; Romanian: 29,186; Latvian: 19,933) apart from the UK. 75% of “foreign born” residents speak their primary language at home. Of these aged 65 years or more (n=12,303) 20% reported having little or no English.
Conclusions: With the growing complexity of therapeutic approaches in lung cancer therapy there is a predictable communication discordance between healthcare staff and patients with limited English proficiency. Strategies incorporating formal interpreters, staff members with diverse linguistic skills and family members proficient in English may enhance the communication with patients thereby improving their treatment decisions.
Legal entity responsible for the study: The authors
Funding: Has not received any funding
Disclosure: All authors have declared no conflicts of interest.