Patients with leukemia will be supported with information – Newspaper Kommersant No. 179 (7380) of 09/28/2022

22% of Russians surveyed by the Tinkov Family Foundation and the Leukemia Foundation do not know what blood cancer is. 28% of respondents do not know or are not sure what to do if someone close to them is diagnosed with this disease. More than half of the respondents have not heard of peer consultants – those who have had an illness and are ready to share their experience. At the same time, as experts emphasize, it is access to information that in many ways helps the patient enter remission and defeat the disease. To help patients and their relatives, the foundations are launching Russia’s first information portal “with reliable information about leukemia.”

The Tinkov Family Foundation (which provides systematic support for the development of oncohematology in Russia) and the Leukemia Foundation conducted a survey on their social media accounts and messenger channels about what the average Russian knows about blood cancer today. From September 14 to September 25, 2022, more than a thousand respondents from all over Russia took part in the survey.

Blood cancer, the authors note, is a rather rare disease, which at the same time requires the fastest diagnosis and expensive treatment. In the case of acute forms, the bill goes for weeks and even days. In 2021, the Tinkov Family Foundation conducted a study and found that in Russia, the growth rate of the primary incidence of cancer of the lymphatic and hematopoietic tissue increased from 1.5% in 2018 to 4.7% in 2019. For ten years – from 2009 to 2019 – the proportion of patients with leukemia registered at the dispensary grew annually by 4.2%. According to the Foundation’s experts, this may, on the one hand, mean that oncohematological diseases spread faster than other types of cancer, and on the other hand, that such patients visit doctors more often.

In Russia, men and women fall ill with lymphoma and blood cancer with approximately the same frequency: in 2019, the disease was detected in more than 16 thousand women and 14.5 thousand men. Moreover, mortality from oncohematology has steadily increased from 2013 to 2019, in contrast to mortality from other types of cancer. In 2019, 16.4 thousand people died from oncohematological diseases, and the average annual increase in the number of deaths for 2009-2019 was 1%.

According to the results of the survey, 78% of Russians know what blood cancer is. At the same time, only 23% understand what to do if their loved one has been diagnosed with such a disease. 31% think they would orient themselves in such a situation. 15% admitted that they do not know what to do if a loved one gets sick with blood cancer; another 23% noted that they were not confident in their knowledge. 7% admitted that they had never thought about it at all.

39% of respondents “think they know” how to support a loved one who has been severely diagnosed. 22% do not know about the necessary ways of support and assistance. 8% answered that they would sort it out when faced with this situation, and another 31% that they would seek information about ways to support loved ones and relatives with a difficult diagnosis. 16% “do not know or are not sure” they know about cancer treatments, and 21% gave the same answer about blood cancer treatments.

65% of respondents believe that first of all, people with blood cancer need psychological support (the question allowed multiple answers). 61% of respondents named medical care as the most important. 28% believe that the first should be informational support, and another 23% – financial support.

In the event of illness, 86% of the people surveyed will use doctor’s advice as a source of information about the disease, and 71% will use the websites of specialized organizations and foundations. 58% intend to search for information on the Internet, and 15% will ask their friends and acquaintances.

At the same time, the respondents consider the attending physician to be the most reliable source of information. This option was chosen by 91% of respondents. In second place are the websites of specialized organizations and foundations (78% of respondents). 30% trust the Internet, 14% trust friends and acquaintances.

“Our last year’s study shows that the shortage of hematologists is 40%, in some regions there are none at all,” comments Andrey Abrosimov, medical expert of the Tinkoff Family Foundation. “Accordingly, there can statistically be more than 94 patients per doctor. Therefore, doctors have time to give only minimal information about the methods of treatment and the next steps of the patient. Due to the workload and lack of time, there is no talk of psychological support for patients, and even more so for their relatives.” He acknowledges that in such a situation, people are forced to look for answers on the Internet, and urges to use only trusted sources.

Respondents were also asked if they knew about peer consultants. These are those who have been treated and are in remission or have recovered. Such patients provide free informational, emotional and practical support to a person who finds himself in a previously unfamiliar situation. More than half – 55% of respondents – heard the term “peer consultants” for the first time. 11% shared that they have heard something about them, but do not know who they are. A third of the respondents (33%) know what these specialists do.

Head of the Leukemia Foundation Anush Hovsepyan recalls that September is World Blood Cancer Awareness Month. According to her, the foundation ends the month with the launch of an information portal for those who have encountered any type of blood cancer. “This is the first such portal for people with diseases of the blood system and blood cancer, and we believe that the resource will be able to help a person in any, even the most remote point of our country, cope with a difficult diagnosis,” says Ms. Hovsepyan.

According to the President of the Association of Cancer Patients “Hello!” Irina Borovova, it is precisely “competent” information that patients with oncology lack most of all. This is the answer of 80% of the participants in the studies conducted by the association. People who have been diagnosed, she notes, have a variety of questions: where and how to be treated, what will happen to social status? At the same time, “competent information” helps the patient enter remission and defeat the disease. It is important, according to Ms. Borovova, to inform the “general non-patient” population: “This shows healthy people that oncology is far from a death sentence, that it needs to be fought, and the effectiveness depends not only on the doctor, but also on the patient himself, his mood, adherence to treatment.

Natalya Kostarnova