ABSTRACT
Introduction: Two years in, COVID-19 continues to impact healthcare systems and the treatment and care all patients receive, including those living with lung cancer. The Global Lung Cancer Coalition (GLCC) is a partnership of 42 patient organisations across 30 nations dedicated to improving outcomes for lung cancer patients. The GLCC used its third annual global patient experience survey to explore whether the pandemic had affected the extent to which patients are able to be involved in decision-making around their treatment and care. Methods: Among several topics in the survey, the GLCC’s multi-national steering group of patients, advocates, and clinicians included a question to ask about the extent to which patients felt involved in decisions about their treatment and care when talking to their treatment team. The survey received 555 responses from lung cancer patients across 21 countries. Results: Globally, almost half (48%, 258/533) of patients responding to the 2022 survey said they did not feel fully involved in decisions about their treatment and care, with almost one in ten (9%, 48/533) noting that they were not involved but would like to have been. This is a smaller proportion than in the 2021 survey, where 59% (755/1287) of responding patients stated that they did not feel fully involved in decision-making. The national data in Figure 1 highlights variation in the extent to which patients felt involved in decision-making. In both years, the country with the highest proportion of respondents feeling fully involved in decisions was the Netherlands (76% in 2022 and 75% in 2021). Conclusions: The GLCC’s patient charter highlights that every patient should have informed self-determination, which includes involvement in decision-making. This survey highlights the importance of treatment teams asking, and supporting, lung cancer patients to be as involved in decisions around their treatment and care as they wish to be. In all countries, there is scope to increase the extent to which patients feel involved in decision-making. Research is needed to identify best practice from countries where larger proportions of respondents felt fully involved in decision-making. Keywords: patient involvement, decision making, COVID-19 [Formula presented]
ABSTRACT
Introduction: Lung health checks or screening programmes are a key measure to detecting the disease earlier, when treatment is most likely to be successful, and thus reducing the huge burden currently imposed on the individuals affected, their families, the country, and the healthcare system as a whole. The Global Lung Cancer Coalition (GLCC), a partnership of 42 patient organisations across 30 nations, states in its patient charter that all patients have the right to witness the widespread implementation of well structured, evidence-based programmes of early diagnosis, including screening. With few countries currently offering screening programmes, the GLCC wanted to understand if patients would be willing to attend an appointment if it was available and they were invited. Methods: In the GLCC’s third annual survey, the steering group included questions on the availability of screening in their country, including a question asking patients if they would attend a lung health check or screening programme if invited. The survey received 555 responses from patients across 21 countries. Results: The majority of responding patients (85%, 449/526) said they would attend a screening appointment or lung health check if they were invited. The number of patients willing to attend ranged from 100% in Spain and Ireland to 63% in the USA. One in ten patients (54/526) said they were unsure if they would attend a screening appointment, and almost one in 20 (4%, 23/526) stated that they would not attend. Patients in Italy (17%, 22/129), Taiwan (17%, 12/71) and the USA (37%, 10/27) most frequently selected these options, although the proportions are lower than those stating that they would attend a screening appointment. Figure 1 shows a breakdown of responses by country. Conclusions: Lung health checks or screening programmes are available in very few countries worldwide, despite the increasing number of people being diagnosed every year. The findings from this survey demonstrate that the majority of patients would have been willing to attend a screening appointment to detect their lung cancer earlier if it had been available and they had been invited. As stated in the GLCC patient charter, in countries where lung cancer screening programmes are not available, governments should look to implement pilots as a matter of urgency, as evidence suggests that screening programmes support earlier detection and diagnosis and better patient outcomes. Keywords: advocacy, screening, COVID-19 [Formula presented]
ABSTRACT
Introduction: The Global Lung Cancer Coalition (GLCC) is a partnership of 42 patient organisations across 30 nations dedicated to improving outcomes for lung cancer patients. During the COVID-19 pandemic, many lung cancer patients were offered virtual (telephone or video) consultations alongside or instead of face-to-face appointments. Reasons included protecting patients from exposure to the virus, saving travel time, and freeing-up clinical time. As health systems explore the potential of hybrid systems of telemedicine post-COVID-19, the GLCC wanted to understand patients’ preferences for speaking to their treatment team and how they felt about virtual consultations. Methods: In its third annual online patient survey, the GLCC included questions to ask how patients would like to be able to contact their treatment team in different situations. In total, the survey received 555 responses from patients across 21 countries. Results: The findings show that globally, the majority of responding patients would prefer to see their treatment team in person when: finding out their diagnosis (91%, 406/444);having their first consultation (94%, 412/438);having regular check-ups (78%, 349/450);and there is a change to their treatment (84%, 374/444). However, if they are worried about something, many patients would also be willing to have a telephone consultation (32%, 146/452). Figure 1 highlights that patients in almost all countries favoured telephone over video consultations in all situations. However, video consultations were preferred over telephone consultations by patients in the USA for regular check-ups, and in Taiwan if there is a change to treatment. Conclusions: The findings highlight the importance of treatment teams seeking to understand patients’ preferred methods of contact. Support will be needed for treatment teams and for patients if health systems are to successfully transition to a hybrid model of virtual and in-person appointments. This includes treatment teams and patients having appropriate settings and IT in which to conduct virtual consultations. Patients should be asked whether virtual consultations are working for them, since preferences may change with their experience of technology. Keywords: advocacy, virtual consultations, COVID-19 [Formula presented]
ABSTRACT
Introduction: The COVID-19 pandemic has affected all health systems, including lung cancer treatment and care. Patient advocacy and support organisations play an important role in supporting lung cancer patients every day, particularly through challenging times. The Global Lung Cancer Coalition (GLCC) is a partnership of 40 patient organisations across 29 countries, dedicated to improving outcomes for lung cancer patients. The GLCC wanted to understand whether the COVID-19 pandemic was affecting the requests patients were making to patient organisations, how organisations were responding, and how the pandemic was affecting their income and ability to provide support to patients. Methods: The GLCC’s steering group designed a 15-question survey examining four themes: changes in the levels of demand from patients;topics on which patients were seeking support;changes to services offered by organisations as a result of the pandemic;and impact on patient organisations’ finances. The online survey was sent to all GLCC members and was open for three weeks between April and May 2020. Results: The survey received 23 responses, with 22 organisations from 21 different countries and one Europe-wide organisation responding. Not every organisation answered each question. 14 organisations (14/22, 64%) had received more requests from patients since the start of the pandemic. Three quarters (12/16, 75%) had seen an increase in calls to telephone helplines, 11 out of 16 (69%) received more email requests, half (9/16, 56%) saw increases on Facebook and seven out of 16 (44%) received more requests via their website. Patients’ most frequently asked questions were on their risk of contracting COVID-19 (19/22, 86%) and implications of treatment delays because of COVID-19 (18/22, 82%). Two thirds of organisations (14/21, 67%) had closed some services. Most of these were face-to-face such as seminars, support groups, community outreach programmes and information hubs at hospitals. However, 18 organisations (18/21, 86%) had introduced new digital services including calls to patients or online consultations, as well as extending helpline hours and providing more web content and podcasts. Some organisations preferred not to disclose information about the impact of the pandemic on their organisation’s income. Of the 15 organisations that did respond, ten organisations (67%) had seen a decrease in their income since the start of the pandemic. Only five organisations said their national or regional governments were offering support to patient organisations. Five organisations (5/20, 25%) were worried about their survival, seven (7/20, 35%) were worried about their ability to provide the same level of services, and nine (9/20, 45%) were worried about being able to employ their staff as they did pre-COVID-19. Conclusion: Patient advocacy and support organisations are providing more support to patients during the pandemic. However, many have seen a decrease in their funding, making it more challenging to do so. Patient organisations need urgent support to continue to meet increased patient needs, and for some to survive. Keywords: advocacy, COVID, patient information