#KUPAPYP is the first patient survey on knowledge, accessibility and experiences of people with IBD with modern therapies, created and carried out by the 'Lodz Inflammatory Diseases Association', an association of people with inflammatory bowel diseases. The questionnaire is available at www.zapalency.org.
When illness makes life impossible
Inflammatory bowel disease (IBD), like some other autoimmune diseases, is considered a disease of developed societies, representing a serious social problem. Based on PTG data, it is estimated that more than 50,000 people in Poland suffer from inflammatory bowel diseases, including 10,000-15,000 with Crohn's disease and 35,000-40,000 with Ulcerative Colitis. Most of them are young people, more than 70% of the patients are under 35 years of age, who are just entering life: they want to study, work, enter relationships, start families and participate in social life. Unfortunately, the disease and its accompanying symptoms, including pain, diarrhoea, fever, gastrointestinal bleeding, which lead to anaemia, malnutrition, cachexia and complications from various organs, often exclude them from many areas of life.
As yet, there is no cure or prevention for these diseases, which is why it is so important not to underestimate the symptoms, to make an appropriate diagnosis quickly and to introduce symptomatic treatment as soon as possible, appropriate to the stage and severity of the disease. For patients with IBD, the most important thing is to enter long-term remission and lead as normal a life as possible. In many cases, conventional treatment does not help and the only alternative is modern anti-inflammatory drugs from the monoclonal antibody group, or so-called biological treatment. Despite the efforts of those involved, access to modern treatment for patients with IBD is limited in Poland and falls far short of European standards.
Awareness of modern therapies among patients itself appears to be high. - Biological treatment is one of the main topics discussed by people with IBD on the internet, as well as at patient education meetings. Patients share information, experiences and symptoms related to biological treatment. Understandably, we are all looking for information about therapies that can allow us to function relatively normally - says Monika Leder-Jankowska, vice-president of the Association "Łódzcy Zapaleńcy", affected by Leśniowski-Crohn's disease. However, as practice shows, there is a lack of reliable knowledge about these therapies, and the experiences of those for whom modern treatment has been or is being applied are incomplete and, as such, cannot be an objective source of information for patients.
We take matters into our own hands
The idea of a survey on knowledge, availability and experience of patients with IBD, in terms of modern therapies (biological therapies), was born in the Association as a reaction to the ongoing discussion of patients on this topic, which shows that despite the relatively high awareness of the existence of forms of modern treatment, both knowledge of its nature and its availability in Poland are still insufficient. This makes it all the more unsurprising that patients are increasingly concerned about both the therapy itself - its course and effects, and its accessibility - the conditions of receiving it or the guarantee of continuity of treatment, which in many cases is questionable.
In view of the above, it is extremely important to note that the questions in the survey were developed by the patients who make up the Association "Łódzcy Zapaleńcy", with the help of the research company Open Pharma House and gastroenterologists who supported the project with their substantive knowledge. This allows us to believe that, through the survey, we will be able to diagnose the most important issues, closest to the patients' lives and most vital, while maintaining the highest substantive and methodological level.
We ask, we investigate, we change
The aim of the survey is to organise and clarify information on patients' knowledge, experiences and expectations regarding biological therapies. The final outcome will be the compilation of patients' responses in the form of a report, which will then form the substantive basis for further efforts of the IBD community to improve patients' access to modern treatment methods (biological therapies) in Poland.
A report on the survey will be given to each participant. In addition, the main conclusions of the survey will be posted on the Association's website The enthusiasts of Lodz, in the Association's newsletter, and through modern communication channels, including social media communication. The results of the survey will also be presented at patient education meetings and medical events: congresses, conferences, etc.
Survey in the form of an online questionnaire is aimed at people suffering from: Crohn's Disease and Ulcerative Colitis from all over Poland. The survey can be found at www.zapalency.org.
Honorary patronage The Polish Society of Gastroenterology took over the study. The Mayor of the City of Łódź, the Marshall of the Łódź Province, the Rector of the Medical University of Łódź and the Polish Society of Occupational Medicine.
Study partners: Appetite for Life Association, the Patient Rights and Health Education Institute Foundation, the Association of Social Initiatives and the Prof. J. Nofer Institute of Occupational Medicine in Łódź.
Creative partners: Reequest, Media4U and Heroes Brand Communication
source: press materials of the Association