Survey Highlights Need to Encourage Patients With CRC to Share Experience, Provide Feedback

Barcelona, Spain—Researchers behind a survey evaluating the unmet needs of patients living with metastatic colorectal cancer (CRC) posit that an obvious preference for paper- versus online-based surveys may be the result of limited access to technology or computer illiteracy in elderly patients.

Details about the survey and its findings were presented at the ESMO 21st World Congress on Gastrointestinal Cancer.

“Although colorectal cancer is the third most common malignancy and the fourth leading cause of cancer-related deaths in the world, for patients it is still a taboo and there is little information available about their experience,” explained Zorana Maravic, MBA, BSc, Digestive Cancers Europe, Overijse, Belgium, and colleagues.

“Quality of life [QoL] information available from clinical trials is not representative of the everyday patient experience,” they continued.

Seeking to address this gap in care, EuropaColon, a European organization for patients with CRC, conducted a survey on the Unmet Needs of Patients Living with Metastatic CRC. The purpose of the survey was to help provide a better understanding of the challenges, needs, and QoL of those living with metastatic CRC.

Originally written in English, the survey was translated into 11 languages, including Dutch, German, Greek, Hungarian, Italian, Polish, Portuguese, Serbian, Spanish, and Turkish. Sections of the survey covered demographics; discovery, diagnosis, and treatment of the disease; patient support; and health-related QoL instruments (EORTCQLQ-C30 and EORTCQLQ-C29).

The goal was to survey 1000 patients over the course of 12 months, who could complete it online or print it and fill it out on paper. An alternate strategy had to be used to recruit patients starting 4 months into the process because of low response rates; this alternative strategy included giving patients paper copies of the survey. There were dedicated nurses, clinicians, and volunteers who motivated patients to fill the survey out.

A total of 883 patients completed the survey after 18 months, 73% of whom completed it on paper. In the United Kingdom and the Netherlands, patients preferred to complete the survey online, whereas the printed option fared much better in Belgium, Cyprus, Poland, Serbia, and Spain. Paper and online versions were equally popular in Hungary.

The highest number of responses came from countries with a lot of involvement from volunteers helping with patient recruitment, and included Serbia (170), Poland (163), Spain (112), Hungary (103), Belgium (65), Cyprus (57) and the United Kingdom (53).

“Patients are interested in expressing their views. While social media and internet might play an important role in patient recruitment in Western Europe, it seems that among this population paper is preferred, especially in Central and Eastern Europe. This might be due to access to technology or computer literacy in this elderly population,” Ms Maravic and colleagues said.

“Involvement of a member of the health care team or patient advocacy organization plays a crucial role in patient motivation,” they concluded.—Hina Khaliq

Maravic Z, Rawicka I, Lemmens L, et al. Survey on the unmet needs of patients living with mCRC – learnings from an international study. Presented at: the ESMO 21st World Congress on Gastrointestinal Cancer; July 3-6, 2019; Barcelona, Spain. Abstract PD-023.