Turkey's Most In-Depth Hemophilia Study Completed

Results of Turkey's most comprehensive research on hemophilia announced. The results of Turkey's most comprehensive research into understanding and meeting the needs of individuals with hemophilia have been shared with the public. The research was conducted by IPSOS within the scope of the "By Their Side from Yesterday to Tomorrow" project, initiated by Novo Nordisk—which has been conducting hemophilia research for 32 years globally and 20 years in Turkey—to create a hemophilia-focused roadmap. Novo Nordisk, which has been conducting hemophilia research for 32 years globally and 20 years in Turkey, launched the "By Their Side from Yesterday to Tomorrow" project to develop a roadmap for understanding and meeting the needs of individuals with hemophilia. As the first step of the project, research firm IPSOS conducted in-depth interviews and focus group discussions.

The research, which is the first step of the "By Their Side from Yesterday to Tomorrow" project, is the most in-depth qualitative research conducted in Turkey on hemophilia that focuses on the needs of individuals with hemophilia.

Prof. Dr. Ahmet Muzaffer Demir, Prof. Dr. Bülent Antmen, Prof. Dr. Bülent Zülfikar, Prof. Dr. Cem Ar, Prof. Dr. Fahri Şahin and Prof. Dr. Kaan Kavaklı oversaw the study, which aimed to conduct needs analysis for each age group. The goal was to develop solution proposals tailored to the needs of each age group. The "By Their Side from Yesterday to Tomorrow" project stands out as an important step in keeping hemophilia patients engaged in everyday life. Experts emphasize that better treatment and management can improve the quality of life for hemophilia patients, and note that through preventive therapy, patients do not need to restrict their lives and social activities. Individuals with hemophilia are encouraged to participate in numerous activities—from sports to arts—to remain active in society. Hemophilia patients can continue their lives with much higher quality as long as they do not neglect their treatment. Today, all patients are covered by social insurance and most receive preventive therapy. Experts observe that the frequency of joint problems has significantly decreased in hemophilia patients under 15 years of age, and note with satisfaction that young hemophilia patients are able to continue school and education comfortably and engage in society. Experts who observe that many hemophilia patients are employed and have started families state: "We believe this project will also contribute to the process."

Core needs by age group identified and solution proposals presented

Within the scope of the research aimed at establishing sustainable and forward-looking planning among stakeholders in the hemophilia community, 6 in-depth interviews and 10 focus group discussions were conducted. Focus group discussions were conducted in groups of four people. Individuals aged 12-18 were interviewed along with their parents to obtain deeper and more detailed insights.

As a result of the research, core problems for ages 0-1 were identified as: diagnostic delays and difficulties, the pediatric hematologist's diagnosis of the disease and explaining hemophilia to the family, problems in understanding and managing the disease during the period from the family's initial shock to the acceptance phase, and medication administration problems in finding vascular access for the infant. In response, recommendations were developed including: expanding Hemophilia Centers, identifying hemophilia-friendly family physicians, and hemophilia life coaches.

• Core problems for ages 1-5 were identified as: overprotective attitudes of the family and shifting family dynamics. Recommendations included: family support in managing the reorganized family structure and hemophilia life coaches.
• Core problems for ages 6-12 were identified as: understanding hemophilia and explaining it to the child, and potential problems in school and peer environments. For this group, solutions included: hemophilia life coaches, remote learning options on days when school cannot be attended, under the heading "I Am a Person with Hemophilia."
• Core problems for ages 12-18 were identified as: adolescent issues, taking control of their own treatment, and becoming more active during pandemic periods. For this group, hemophilia life coaches and an activation application were proposed as solutions.
• For ages 19-24, core problems identified were: school and career choice issues and opportunities within disabled employment. Hemophilia life coaches were recommended here as career advisors.
• For ages 25-35 and 35+, core problems were identified as: career success and retention, permanent joint damage, pain, coping with unexpected bleeding episodes, and emergency difficulties.