CRC Patients Report on How They Are Treated: Survey Results

Liam Davenport

July 09, 2019

BARCELONA, Spain — The need for clinicians and patients to work together to tackle unmet needs in oncology was highlighted by researchers who conducted a survey involving patients with metastatic colorectal cancer (CRC).

The survey was translated into 11 languages and applied to 15 countries across Europe.

The survey results were detailed across two posters here at the 2019 World Congress on Gastrointestinal Cancer by Zorana Maravic, MBA, director of Group and Project Development, EuropaColon/Digestive Cancers Europe, Overijse, Belgium, and colleagues.

The first poster (PD-023) described patient demographic characteristics, the experience of diagnosis and treatment, and health-related quality of life.

The researchers found that, while recruitment was high in some countries, in others — especially Eastern European nations — it took far longer than the originally planned 12 months to recruit less than 10 patients.

The second poster (P-328) looked at the results of the survey.

It found that 87% of 883 respondents were treated within 3 months of diagnosis, and the majority of cases were discussed at a multidisciplinary team (MDT) meeting.

Maravic told Medscape Medical News that, in terms of the time frame in which patients were treated, the results were "good."

However, the results revealed wide variations in how well informed these patients are about adverse effects of treatment.

There were even greater disparities when it came to how included patients felt about decision making: more than 80% in Belgium and Hungary felt included, whereas in the United Kingdom almost 75% of patients said that their own views were not considered.

These "huge variations" in opinion-sharing between countries underlines that there "is a difference in mentality of patient and clinicians" in different European regions, Maravic commented.

"In Eastern European countries clinicians still believe that they should make a decision on their own. There is not so much discussion about the treatment," she said.

Conversely, patients in countries such as Belgium, Cyprus, and Spain felt much more involved in shared decision making.

To address these variations, Maravic said that Digestive Cancers Europe is conducting several projects to educate patients on the treatments available in their home country, and to encourage doctors to set out the options more clearly.

Biggest Challenge Was Clinicians

During the post-presentation discussion, Jolanta Gore-Booth, executive director of EuropaColon/Digestive Cancers Europe, said that the "biggest challenge was to get clinicians to work with us."

Maravic explained that clinicians, for example, in Poland, Hungary, and Spain "recognized the need" of the questionnaire, while in countries such as the Netherlands there was "a saturation of other questionnaires and documents that the patients were already filling out."

Wondering how to encourage more clinicians to take part, Gore-Booth asked Gerald Prager, MD, Medical University of Vienna, Austria, who chaired the poster discussion tour, why 100 patients in Poland were recruited to the study very quickly, whereas in other countries just 10 patients were recruited in 18 months.

Prager said that he feels "it has a lot to do with patient advocacy groups in those countries; how active they are and how much interaction they have."

Noting that the response to the survey in his native Austria was "very low" — just eight patients — Prager said that there is a patient advocacy group for colorectal cancer "but unfortunately they are not very active."

"There is a tremendous need to empower the patient advocacy groups all over Europe, especially in my country," he commented.

"We as doctors cannot do this, but we are standing on the same side as the patients, so I think interaction is extremely important," he added.

Expanding on this theme, Prager told Medscape Medical News that patients potentially have a loud voice that "can be heard by caregivers, politicians and regulatory agencies, and I think we should not underestimate [that]."

Prager also commented that, as medical oncologists, he and his colleagues "feel like advocates for our patients."

"We are sitting on the same side," he said, "and fighting for new medication reimbursement, access to medications.

"However, when sitting in front of the patient, on the other side of the table, we should encourage them to join patient organizations, because such groups may have a different perspective."

Prager said that a good model is the United States, "where patient organizations are probably even stronger than in Europe, and they can achieve a lot."

He underlined that activities such as cancer awareness months are "very important for the awareness of the healthy population to go for screening for cancer," but emphasized the importance of "the awareness of the politicians to show that there are patients out there who may need their help."

Prager would also like to see doctors collaborating more with patient organizations, as he believes "we can learn from each other" and there is "an educational need on both sides."

While he "totally respects" any patient deciding he or she does not want to advocate for his or her cancer, Prager believes that patient organizations are important to address "so many unmet needs."

Prager gave the example of a young patient who had left home to go into further education and was then diagnosed with cancer, forcing her to interrupt her studies to undergo treatment. Because she was not working and hadn’t started paying taxes, this student – and other young people like her — "don’t have a social safety net" to catch them, so they have little choice but to go back to being "dependent on their families, moving back in with their parents."

"Although we’re living in Europe and we’ve got social systems, because they have never worked, there is no social support for those young patients," Prager said.

"I think we have to raise awareness of these situations and [have] patients organize themselves and bring all these topics up."

Survey Details, and Quality of Life Data

The survey was conducted in 15 countries across Europe: Austria, Belgium, Cyprus, Germany, Hungary, Ireland, Italy, the Netherlands, Norway, Poland, Portugal, Serbia, Spain, Turkey, and the United Kingdom (UK).

The aim was to recruit 1000 patients over the course of 1 year, via volunteer local healthcare teams.

Due to slow recruitment in several countries, recruitment was extended to 18 months.

Overall, 883 patients completed the survey, with the most patients recruited in Serbia (170), Poland (163), Spain (112), Hungary (103), and Belgium (65). Just 1 patient was recruited in Norway, alongside 3 in Ireland and 8 in Austria.

The survey was delivered either online via social media or as a printable document. The printed version of the survey was preferred by 73% of patients across all 15 countries.

This varied widely by country, however: patients in Italy, the Netherlands, and Turkey preferred the online version, whereas those in Belgium, Cyprus, Germany, Poland, Serbia, and Spain preferred the print version.

During her presentation, Maravic said that "clinicians and nurses are very important for motivating the patients to complete the survey, and patients are very interested to express their views," noting that the completion rate was 90%.

The results showed that the average age of the patients was 62.7 years, and 52.1% were male.

At the time of the survey, between 65% and 70% were currently undergoing treatment. A notable exception was the UK, where 64% had already completed treatment and had no evidence of disease.

Across all countries, treatment was typically given with 3 months of diagnosis, with 22% treated in the first 2 weeks, 36% between 2 weeks and 1 month, and 29% between 1 and 3 months.

Nearly two thirds (65%) of patients said that their treatment was discussed at a multidisciplinary team meeting, and that they were informed about the outcome.

The most common treatments were surgery (in 81% of patients) and chemotherapy (90%), with radiotherapy administered to 20% of patients and targeted therapy used in 11%.

A molecular test was reported as having been performed by 22% of patients, ranging from 6% in Serbia to 67% in Ireland.

Overall, 76% of patients recalled having been informed about the adverse effects of treatment, but 12% of patients said that they were not informed; another 12% said they were not sure.

While more than 90% of patients in Belgium, Cyprus, Spain, and Hungary reported being told about treatment adverse effects, just 53% of patients in Serbia said that they were informed.

The question about whether patients thought that their views were considered by clinicians in decision making garnered a wide variety of answers, with huge differences between countries.

For example, 84% of patients in Belgium, 83% in Cyprus, and 67% in Hungary felt that their views had been taken into account when deciding on the management of their disease.

In contrast, 51% of patients in Serbia were not sure whether their opinion was considered, while as many as 74% of patients in the UK who responded to the survey said that their views were not taken into account.

The researchers acknowledge that the study was limited by its cross-sectional design and the single data entry point. It is also clear that, in some countries, the samples were not representative of the overall patient population.

Moreover, Maravic admitted that, at 20 pages, the questionnaire was "too long," but added that "the wealth of data that we have is amazing…this is just one abstract; we could produce one hundred."

Maravic has disclosed no relevant financial relationships.

World Congress on Gastrointestinal Cancer 2019: Posters PD-023 and P-328. Presented July 5, 2019.

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