Perceptions and Attitudes toward Cancer in an Eastern European Country: Longitudinal study

doi:10.21203/rs.3.rs-3962594/v1

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Perceptions and Attitudes toward Cancer in an Eastern European Country: Longitudinal study

https://doi.org/10.21203/rs.3.rs-3962594/v1

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Background

Romania bears a substantial cancer burden, as evidenced by the incidence of 98,886 new cases and an estimated 54,486 fatalities in the year 2020. This places the nation among the top 10 European countries with regard to cancer-related mortality rates. The exacerbation of cancer mortality in Romania can be attributed primarily to deficiencies in the accessibility of cancer-related information, preventive measures, screening services and cutting-edge cancer treatments.

Methods

To assess citizen’s attitudes regarding cancer prevention, diagnosis, and treatment, including personalized therapies, immune-oncology, and genomic biomarker testing, a longitudinal sociological investigation was undertaken across three panels of respondents in the years 2016, 2018, and 2020. Utilizing computer-assisted telephone interviewing (CATI) technology, the surveys were administered via telephone interviews. The sampling methodology employed probabilistic and multistratified techniques to ensure a comprehensive representation of the population.

Results

In 2020, our study revealed a declining trend in public perceptions regarding cancer prevention and curability compared to earlier years. Specifically, the proportion of respondents who believed cancer could be prevented decreased from 82% in the period spanning 2016 to 2018 to 78% in 2020. Similarly, the belief in the curability of cancer dropped from 74% in 2016 to 71% in 2020. Alarmingly, there was an upward trajectory in the percentage of individuals who held the conviction that cancer inevitably leads to death, rising from 44.9% in 2016 to 47.9% in 2020.

Conclusions

Cancer is a disease of the genome, but solutions should be identified at the societal level and co-created with citizens and patients.

Cancer

Health literacy

Cancer prevention

Attitudes and perceptions

Romania

Although Europe hosts less than 10% of the world's population, it accounts for approximately 23% of cancer cases [1], highlighting the substantial disease burden and the intricate factors contributing to cancer occurrence. Current cancer prevention knowledge could prevent more than 40% of cancer deaths in Europe [2]. However, achieving informed health decisions requires high health literacy, which refers to effectively accessing and using health-related information for wellbeing [3]. Health literacy strongly predicts health status [4], but there is no universal formula for increasing health literacy globally, regionally, nationally, or at the community level.

The European Code against Cancer, published in 1987 [5], aimed to reduce cancer burden by informing people about avoiding carcinogenic exposures, adopting cancer-reducing behaviors, and participating in screening programmes. Nonetheless, its recommendations only partially reach the general population despite decades of promotion [6]. Successful cancer risk reduction necessitates not only being informed about evidence-based actions but also being willing to embrace lifestyle and behavioral changes according to these recommendations.

Few studies have explored the influence of implementation [7] on citizens' attitudes and perceptions of adopting preventive behaviors [8, 9], adhering to cancer screening and treatment innovations [10], and actively seeking health information. Social network research is seen as the next step, as it highlights the influence of connections on health decisions [11], the adoption of healthy behaviors, and the adherence to public policy recommendations [12]. Moreover, inequalities in cancer prevention and care between Central-Eastern and Western Europe are widening [13], exacerbated by the COVID-19 pandemic.

Romania continues to face a high cancer burden [14], with 98,886 new cases and approximately 54,486 deaths in 2020[15]. It ranks among the top 10 European countries in cancer mortality rates [16], partly due to the lack of information and adequate screening services leading to late cancer detection [17]. For example, in 2019, only 9% of Romanian women aged 50–69 years reported having received a mammogram within the previous two years, compared to France's 70%. Romania launched a cervical cancer screening program in 2012, targeting approximately 6 million women aged 25–63, but by 2015, only 7% had been tested[18].

Without a change in approach, Romania will remain among the top three European countries with the highest avoidable death rate, low cancer screening rates, and high late-stage diagnosis and cancer deaths. Funded by the Centre for Innovation in Medicine, a European Research and Innovation Nongovernmental Organization based in Romania, this research aimed to assess the impact of cancer and the general population's cancer literacy on various levels in this complex cancer ecosystem.

The study titled "Perceptions and Attitudes Regarding the Prevention, Diagnosis, and Treatment of Cancer" was conducted in three survey rounds in 2016, 2018, and 2020, with each round conducted every two years. The specialized company IMAS Marketing & Polls was commissioned and funded by the Centre for Innovation in Medicine to collect the data. The focus of each survey was to analyze the perceptions and attitudes of Romanians regarding cancer prevention, screening, diagnosis, treatment, and access to cancer innovation. Additionally, the study identified the population segments directly or indirectly affected by cancer.

Each survey round included 1,010 nationally representative participants over 18 years old, with 51% women and 49% men from all regions of Romania. The participants were distributed as follows: 15% from Bistrița, Sălaj, Satu-Mare, Maramureș, Alba Cluj, and Bihor; 9–10% from Hunedoara, Arad, Caraș-Severin, and Timiș; 6% from Covasna, Harghita, Mureș; 10% from Mehedinți, Gorj, Vâlcea, Dolj, and Olt; 13% from Brăila, Dâmbovița, Buzău, Argeș, and Prahova; 10–11% from Galați, Botoșani, Vaslui, and Iași; 9% from Bucharest; 5% from Brașov and Sibiu; 5% from Tulcea and Constanța; 7% from Ilfov, Giurgiu, Călărași, Teleorman, and Ialomița; and 10–11% from Vrancea, Ne

The sample covered six categories of areas: 28–30% from rural areas and villages with fewer than 5,000 inhabitants; 14–15% from rural areas with more than 5,000 inhabitants; 15–16% from small-urban areas (population between 10,000–49,000); 15–17% from medium-urban areas (population between 50,000-199,000); and 24–26% from large-urban areas (population over 200,000).

Conducted via telephone interviews using computer-assisted telephone interviewing (CATI) technology, the surveys employed probabilistic and multistratified sampling. The interviews were randomly selected by a computer, with nonexistent numbers and contact errors eliminated. The survey durations ranged from 20–27 days, with data collected on the following dates: April 1–20, 2016 (2016 survey), May 9 to June 4, 2018 (2018 survey), and March 5–26, 2020 (2020 survey). The sampling error for each survey was ± 3.1%.

1.1 Impact of cancer in Romania

Due to the absence of a National Cancer Registry in Romania, a crucial objective was to determine the number of cancer diagnoses in the country and the population's direct or indirect experiences with the disease (e.g., family members diagnosed with cancer). The results (Fig. 1) of the three surveys revealed that approximately 4–5% of respondents had been diagnosed with cancer at some point in their lives, and over 21% (21.1% in 2016, 21.8% in 2018, and 24.5% in 2020) reported that a family member had received a cancer diagnosis. Hence, approximately 1 in 4 Romanians have experienced cancer either directly or indirectly, signifying significant medical, psychosocial, and economic implications.

1.2 Cancer Fatalism

Another crucial factor we aimed to measure was fatalism in relation to cancer. Measuring cancer fatality is important because it can indicate people's willingness to take preventive action and/or continue the treatment journey in case of diagnosis[19]. The greater the fatalism in relation to the disease, the more people will resign and stop participating in screening programs, will not adopt preventive behaviors, and will not try to find and access therapeutic options (and to search for innovative treatments) in case of a cancer diagnosis. The question regarding the possibility of curing cancer was first introduced in 2016, coinciding with the emergence of new targeted therapies and immunotherapies for the treatment of advanced melanoma and non-small cell lung cancer. These state-of-the-art treatments have significantly improved patients' quality of life and survival rates compared to previously existing therapies. The perceptions of the respondents are, however, opposite to the scientific evidence. To assess fatalism, two questions were addressed: (a) Are there cancers that can be cured? and (b) Does a cancer diagnosis always lead to death?

Figure 2 illustrates the attitudes of Romanians regarding the possibility of curing cancer, which initially increased from 74.0% in 2016 to 77.5% in 2018 but then decreased to 71.5% in 2020; additionally, the level of agreement, which was initially 44.9% in 2016, slightly decreased to 43.7% in 2018 and increased to 47.9% in 2020.

The surprising decrease in the percentage of Romanians who believe in the possibility of curing cancer despite increased access to innovative therapies and approved oncology drugs between 2016 and 2020 suggests a lack of knowledge regarding new treatments for various forms of cancer. Fatalism, with a prevalence of 47.9% among the population, may also contribute to this decline in beliefs, impacting how individuals cope with a potential cancer diagnosis. As proximity to a cancer diagnosis increases, so does the likelihood of fatalism, with almost half of the Romanian population reacting this way when facing the possibility of cancer.

1.3 Cancer innovation awareness: personalized medicine and immuno-oncology

Another aspect of the study was to assess the population's dynamic perception of cancer innovations. As of March 2020 (Fig. 3), approximately 42% of the study participants declared that they had heard of the term “personalized medicine”. In comparison, in May 2018, 44.0% of the respondents heard of the term, while almost 40% of the Romanians knew this term in 2016, when the notoriety of the term was first evaluated. Regarding “immuno-oncology”, 39.1% of the people interviewed in March 2020 had heard of this notion. The notoriety of the term “immuno-oncology” differs from the data from previous waves (higher than 42.5% in 2018 and lower than 37.1% in 2016). The notoriety of the term “biomarkers” was maintained at a constant value (42.8% in 2020 and 42.2% in 2018).

1.4 Information sources about cancer

The top 5 sources from which Romanian citizens obtain information about cancer prevention, diagnosis, and treatment are medical personnel (doctors or nurses), the online environment (websites, blogs, medical forums, social networks, etc.), television, informative materials (reports, posters, brochures, leaflets, etc.), and print media. Healthcare professionals are considered the best source of medical information, which is why they rank first on the list of most-used sources. The tendency of the population to turn to this source of information increased from 2016 to 2018 by 2.4% (from 67.5% in 2016 to 69.9% in 2018), and then, from 2018 to 2020, it decreased by 1.7% (from 69.9% in 2018 to 68.2% in 2020). Overall, from 2016 to 2020, there was a 0.7% increase in population information from this source. The online environment ranks second in the list of sources of information (in 2016, the second most common source was television) among the Romanian population in 2018 and 2020, with a growing percentage over the three years (60.2%) in 2016 and 2018, with 61.3% in 2020.

The analysis of data from the three rounds of the survey indicated the potential presence of an infodemic as an explanation for some inconsistencies over time, such as the increase in the fatalism rate and the decrease in awareness of the terms “personalized medicine” and “immuno-oncology” (between 2018 and 2020), despite improved access to innovative treatments from those categories. While targeted therapies and immunotherapies are being reimbursed, communication campaigns focused on the diseases and not the drugs (due to restrictions on advertising prescription drugs to the public), resulting in a large volume of information about cancer with limited actionable value for citizens and patients in terms of access to innovative cancer care and treatments.

Moreover, even before the COVID-19 pandemic, the increased accessibility of online platforms, coupled with the continuous degradation of the level of health education among the Romanian population, created a challenging and bewildering informational health space for laypeople to navigate. The proliferation of incomplete and scientifically invalid information became rampant on social media networks, platforms, and forums. This surge in misinformation was particularly concerning because it coincided with the emergence and rapid growth of medical/health news online platforms in Romania between 2018 and 2020, with at least one platform dedicated to each disease awareness campaign. Additionally, during this period, there was a notable increase in internet services and social network usage, which further contributed to the dissemination of unreliable health information. As a result, discerning credible sources from misleading ones became increasingly difficult for individuals seeking accurate health-related knowledge, potentially leading to uninformed decisions and health-related behaviors. This phenomenon likely contributed to the erosion of accurate knowledge and exacerbation of misconceptions regarding cancer and its treatment modalities among the general public, highlighting the importance of targeted interventions to combat misinformation and enhance health literacy.

Cancer is a disease of the genome, but solutions should be identified at the societal level and co-created with citizens and patients. In the end, everything is in a cyclical relationship: poor communication leads to a decrease in what we call “cancer literacy”; when this component is low, the individual does not have the ability to properly filter medical information. Furthermore, the tendency to assimilate distorted information and fake news leads to a negative perception of the disease, despite the progress made, and this perception increases the rate of fatalism and decreases concern for one's own health. Consequently, disregarding preventable factors, avoidable cancers also occur, and the total number of preventable cancers increases. The cycle repeats itself endlessly.

Overall, although the understanding of the disease has changed, the degree of complexity has increased, scientific progress is occurring at an unprecedented speed, and patients have easy access to information; these changes are reflected in the Romanian cancer landscape as well, and the degree of knowledge about the disease, prevention, early diagnosis, and treatments decreased from 2016 to 2020. This could be attributed, on the one hand, to the cancer infodemic and, on the other hand, to poor cancer care services, as Romania has the highest avoidable mortality rate from the European Union [20].

The topic of cancer has become a priority on the agenda of the European Commission, but East‒West inequalities in cancer have the potential to become the turning point of Europe’s Beating Cancer Plan[21]. Beyond the quality of health systems and healthcare services, these inequalities can only be solved by understanding the needs of citizens, raising their trust, lowering their fatalism, and working together with them to co-create the best solutions. The time for another level has come; the citizen in the driving seat in regard to health in Europe.

Contributing to the general effort, the Centre for Innovation in Medicine, based on the insights from these studies together with the lessons of the COVID-19 pandemic, developed a personalized communication model (based on a citizen matrix) aimed at building the foundation for effective cancer prevention and control communication strategies [22].

Ethics approval

The survey methodology and questionnaire were approved by the Board of Ethics of the Centre for Innovation in Medicine, a not for profit, non-governmental research organisation (Decision 1/3 April 2016). Informed consent was obtained from each participant interviewed. The data were analysed anonymously. We certify that the study was performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

Consent for publication

Not applicable

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Competing Interests

The authors declare that there are no conflicts of interest or competing financial interests that could be perceived as influencing the results or interpretations presented in this article.

Funding

Furthermore, no funding sources were involved in the research and preparation of this manuscript. The study was conducted with utmost objectivity and integrity, and the authors have nothing to declare in relation to this work.

Authors contribution

All authors contributed significantly to the creation of this manuscript. All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by MG, CC, AB, BC and RS. The first draft of the manuscript was written by AB and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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No competing interests reported.

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Version 1

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You are reading this latest preprint version

Perceptions and Attitudes toward Cancer in an Eastern European Country: Longitudinal study

Status:

Version 1

Abstract

Figures

Background

Methods

Results

1.1 Impact of cancer in Romania

1.2 Cancer Fatalism

1.3 Cancer innovation awareness: personalized medicine and immuno-oncology

1.4 Information sources about cancer

Discussions

Conclusions

Declarations

References

Additional Declarations

Status:

Version 1