Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study

Zühal Demirci; Yasemin Yıldırım; Fisun Şenuzun Aykar; Fahri Şahin

doi:10.19161/etd.1658880

TR EN

Yetişkin hemofililerde profilaksi uyumunu etkileyen faktörler: Nitel bir çalışma

Abstract

Amaç: Hemofili, kas ve eklemlerde spontan ve travmatik kanamalarla karakterize, genetik geçişli bir hastalıktır. Hemofili hastalarının yaşam kalitesini koruyabilmeleri için tedaviye iyi uyum sağlamaları ve hastalık yönetimini etkin bir şekilde gerçekleştirmeleri gerekmektedir. Bu çalışmanın amacı, hemofili hastalarında profilaktik tedaviye uyumu etkileyen faktörleri, hastaların bakış açısından değerlendirmektir. Gereç ve Yöntem: Çalışmaya bir Hemofili Bakım Merkezi'nde takip edilen 21 birey katılmıştır. Katılımcıların çalışmaya dahil edilebilmesi için; bilgilendirilmiş onam vermeleri, 18 yaş ve üzerinde olmaları, hemofili A veya B tanısına sahip olmaları, en az iki yıldır profilaksi tedavisi alıyor olmaları ve Türkçe soruları anlayıp yanıtlayabilecek durumda olmaları gerekmekteydi. Veri toplama yöntemi olarak bireysel, yüz yüze derinlemesine görüşme tekniği kullanılmıştır. Görüşmeler ses kaydına alınmış ve kaydedilen veriler araştırmacı tarafından yazıya dökülmüştür. Veriler hem manuel olarak hem de nitel araştırma analizleri ve kavramsal haritalama için kullanılan NVivo yazılımı aracılığıyla analiz edilmiştir. Bulgular: Çalışmanın bulgularına göre, tedaviye uyumu azaltan faktörler arasında hastaneye ulaşmada yaşanan zorluklar, hastaların kendilerini iyi hissetmeleri ve sağlık çalışanlarının tutumları yer almaktadır. Öte yandan, tedaviye uyumu artıran faktörler ise günlük aktiviteleri sürdürebilmek, fiziksel fonksiyonları korumak ve kanama semptomlarıyla karşılaşmak olarak belirlenmiştir. Özellikle yetişkinlerde uyum çabalarına daha fazla önem verilmesi gerekmektedir. Ayrıca, sağlık çalışanları ile kurulan ilişkinin tedaviye uyum açısından kritik bir öneme sahip olduğu görülmüştür. Sonuç: Bu çalışma, şu önemli noktaları anlamamıza katkı sağlamaktadır: I.Hemofili tedavi merkezleriyle etkili iletişim, hastalık ve tedaviye yönelik inançlar, sosyal destek ve hasta beklentileri, tedaviye uyumu artırmada önemli faktörlerdir. II.Tedaviye uyumun değerlendirilmesinde bireysel farklılıklar büyük önem taşımaktadır. Çalışmamız , EAHAD Kongresinde poster sunumu olarak kabul edilmiştir ve abstract olarak -Volume23, IssueS2, Special Issue:10th Annual Congress of the European Association for Haemophilia and Allied Disorders, Paris, France February 2017 Pages e1-e8 (Late-Breaking Abstracts) ve “3.Hemofili Vakalarla Eğitim Sempozyumu, 17-19 Şubat 2017, Antalya da poster bildirisi olarak kabul edilmiş ve bildiri kitabında yayınlanmıştır.

Keywords

Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study

Abstract

Aim: Hemophilia is especially a hereditary disorder at risk of bleeding spontaneous and traumatic hemorrhages within the muscles and joints. Good adherence to treatment and disease management is essential for people with hemophilia to maintain a good quality of life. The aim of this study is to assess the factors influencing adherence to prophylactic treatment from the patients’ perspective. Materials and Methods: The study involved 21 participants who followed at a Hemophilia Care Centre. Participants were eligible for inclusion if they provided consent, were 18 years or older, had a diagnosis of hemophilia A or B, received prophylaxis for at least two years, and possessed the ability to understand and respond to the questions in Turkish. We used individual face-to-face in-depth interview to collect data. Interviews were taped recorded and data in the tape was transcribed by interviewer Data was analyzed both manually and with NVivo software for qualitative research analysis and concept mapping. Results: Results of this study, decreasing factors of adherence were difficulties accessing or getting to a hospital, feeling good, and health workers’ attitude. Increasing factors of adherence were preserving activities, physical function, experiencing bleeding symptoms. The adherence efforts should be especially to adults. Relationship with health worker is important for adherence treatment. Conclusions: This study allows us to understand (1). Effective communication with the hemophilia treatment center, beliefs about illness and treatment, social support, and patient expectations are crucial factors for improving adherence (2). Individual differences are vital in assessing treatment compliance. Note: Our study was accepted as a poster presentation at the EAHAD Congress and published as an abstract in - Volume 23, Issue 2, Special Issue: 10th Annual Congress of the European Association for Haemophilia and Allied Disorders, Paris, France, February 2017, Pages e1-e8 (Late-Breaking Abstracts) and also as a poster presentation at the 3rd Hemophilia Cases Education Symposium, February 17-19, 2017, Antalya, where it was published in the proceedings.

Keywords

References

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Details

Primary Language

English

Subjects

Haematology, Internal Diseases

Journal Section

Research Article

Authors

Zühal Demirci ^*
0000-0001-7509-8020
Türkiye

Yasemin Yıldırım
0000-0002-8970-3743
Türkiye

Fisun Şenuzun Aykar
0000-0002-3466-4943
Türkiye

Fahri Şahin
0000-0001-9315-8891
Türkiye

Publication Date

June 10, 2026

Submission Date

March 16, 2025

Acceptance Date

December 16, 2025

Published in Issue

Year 2026 Volume: 65 Number: 2

DOI

https://doi.org/10.19161/etd.1658880

IZ

https://izlik.org/JA27FK75JP

Cite

RIS / Bibtex

APA

Demirci, Z., Yıldırım, Y., Şenuzun Aykar, F., & Şahin, F. (2026). Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study. Ege Tıp Dergisi, 65(2), 227-236. https://doi.org/10.19161/etd.1658880

AMA

1.Demirci Z, Yıldırım Y, Şenuzun Aykar F, Şahin F. Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study. EJM. 2026;65(2):227-236. doi:10.19161/etd.1658880

Chicago

Demirci, Zühal, Yasemin Yıldırım, Fisun Şenuzun Aykar, and Fahri Şahin. 2026. “Influencing Factors of Adherence to Prophylaxis in Adults With Hemophilia: A Qualitative Study”. Ege Tıp Dergisi 65 (2): 227-36. https://doi.org/10.19161/etd.1658880.

EndNote

Demirci Z, Yıldırım Y, Şenuzun Aykar F, Şahin F (June 1, 2026) Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study. Ege Tıp Dergisi 65 2 227–236.

IEEE

[1]Z. Demirci, Y. Yıldırım, F. Şenuzun Aykar, and F. Şahin, “Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study”, EJM, vol. 65, no. 2, pp. 227–236, June 2026, doi: 10.19161/etd.1658880.

ISNAD

Demirci, Zühal - Yıldırım, Yasemin - Şenuzun Aykar, Fisun - Şahin, Fahri. “Influencing Factors of Adherence to Prophylaxis in Adults With Hemophilia: A Qualitative Study”. Ege Tıp Dergisi 65/2 (June 1, 2026): 227-236. https://doi.org/10.19161/etd.1658880.

JAMA

1.Demirci Z, Yıldırım Y, Şenuzun Aykar F, Şahin F. Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study. EJM. 2026;65:227–236.

MLA

Demirci, Zühal, et al. “Influencing Factors of Adherence to Prophylaxis in Adults With Hemophilia: A Qualitative Study”. Ege Tıp Dergisi, vol. 65, no. 2, June 2026, pp. 227-36, doi:10.19161/etd.1658880.

Vancouver

1.Zühal Demirci, Yasemin Yıldırım, Fisun Şenuzun Aykar, Fahri Şahin. Influencing factors of adherence to prophylaxis in adults with hemophilia: A qualitative study. EJM. 2026 Jun. 1;65(2):227-36. doi:10.19161/etd.1658880