Objavljena studija HAEMOPHILIA – Quality of Life of Persons with Haemophilia in Croatia

Kao 46. knjiga Biblioteke STUDIJE Instituta društvenih znanosti Ivo Pilar objavljena je u suizdavaštvu s Društvom hemofiličara Hrvatske i Hrvatske akademija znanosti i umjetnosti, Razredom za medicinske znanosti knjiga Marka Marinića, Stanka Rihtara i Silve Zupančić Šalek HAEMOPHILIA – Quality of Life of Persons with Haemophilia in Croatia

The general insight into the specificities of haemophilia has begun to increase in recent times, and this book aims to make a contribution to this trend. Our goal is to raise the level of knowledge about the specificities of the disease, and the characteristics of the quality of life of persons with haemophilia presented from their own perspective. – From the Foreword

Marko Marinić, Stanko Rihtar, Silva Zupančić Šalek
HAEMOPHILIA. Quality of Life of Persons with Haemophilia in Croatia
Bibliotheca Studies. – Book 46
Institute of Social Sciences Ivo Pilar – Croatian Haemophilia Society – Croatian Academy of Sciences and Arts
Zagreb, 2023. – 212 pp.
ISBN 978-953-8404-31-3 (Institute Pilar)
ISBN 978-953-347-529-5 (HAZU)

Contents

– Cover | Impressum | Contents

Foreword
1. BASIC CHARACTERISTICS OF HAEMOPHILIA
2. SPECIFICITIES OF HAEMOPHILIA
3. TREATMENT OF HAEMOPHILIA
4. COMPLICATIONS IN HAEMOPHILIA
5. RESEARCH METHOD
6. RESULTS
7. TABLE OVERVIEW OF RESULTS
8. SUMMARY OF MAIN FINDINGS
9. SAŽETAK GLAVNIH NALAZA .
Bibliography
About the Authors

From the Foreword

By incidence, or the proportion of people suffering from a disease in the general population, haemophilia belongs into the group of rare diseases. As a rule, our knowledge about such diseases is limited, causing problems primarily to the patients and their families, their immediate and wider community, and finally doctors and the health system as a whole. Fortunately, the general insight into the specificities of haemophilia has begun to increase in recent times, and this book aims to make a contribution to this trend. Our goal is to raise the level of knowledge about the specificities of the disease, and the characteristics of the quality of life of persons with haemophilia presented from their own perspective.

The book is thematically divided into two parts. In the first, introductory part, medical aspects of haemophilia are described: the history, epidemiology, pathophysiology, typology, clinical picture, diagnostics and therapeutic options.

The second part provides a detailed portrait of the lives of adults with haemophilia in Croatia. The data on which it is based were collected as part of the project HEMOQoL – Quality of Life of Adults with Haemophilia in Croatia – Medical and Psycho-social Aspects, which was carried out by means of a survey among members of the Croatian Haemophilia Society. As can be anticipated from the Project title, the study included objective and subjective indicators of the quality of life, i.e. the sociodemographic, health-related and (socio)psychological status of patients.