{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T22:25:01Z","timestamp":1775082301349,"version":"3.50.1"},"reference-count":43,"publisher":"MDPI AG","issue":"6","license":[{"start":{"date-parts":[[2024,5,29]],"date-time":"2024-05-29T00:00:00Z","timestamp":1716940800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Life"],"abstract":"<jats:p>Haemophilia presents a significant challenge to the quality of life of affected individuals. Evaluating the health-related quality of life (HRQoL) of people with haemophilia (PwH) provides a valuable mean of assessing their perception of overall care outcomes, while also identifying influential factors across various age and condition severity demographics. This observational retrospective study determined the HRQoL of 100 adult PwH in Northern Greece through comprehensive analysis and interpretation of their HRQoL levels, particularly in domains concerning their physical, emotional, and mental well-being, obtained through the Haem-A-QoL index questionnaire. Disease severity and young age were significantly associated with the administration of prophylactic treatment (84.2% of patients with severe haemophilia and 65.2% of patients aged 18\u201330). The mean Haem-A-QoL score was 40.11 \u00b1 17.38, with the lowest HRQoL observed in the 46\u201360 age group (46.16), and the highest in the \u226561 age groups (35.16). Notably, the \u2018Sports\/Leisure\u2019 and \u2018Physical Health\u2019 domains exhibited the highest scores, in contrast to \u2018Family Planning\u2019 and \u2018Relationships\/Sexuality\u2019. Individuals with mild haemophilia recorded the lowest mean score (39.38), while those with a severe condition exhibited the highest (41.23). Age, disease severity, and physical activity emerged as primary determinants significantly affecting HRQoL outcomes.<\/jats:p>","DOI":"10.3390\/life14060697","type":"journal-article","created":{"date-parts":[[2024,5,29]],"date-time":"2024-05-29T03:38:30Z","timestamp":1716953910000},"page":"697","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["A Retrospective Observational Study of Quality of Life in a Northern Greece Population of People with Haemophilia"],"prefix":"10.3390","volume":"14","author":[{"given":"Eleni","family":"Moka","sequence":"first","affiliation":[{"name":"2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Zacharo","family":"Ntova","sequence":"additional","affiliation":[{"name":"2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8883-8208","authenticated-orcid":false,"given":"Eleni","family":"Gavriilaki","sequence":"additional","affiliation":[{"name":"2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-2919-5179","authenticated-orcid":false,"given":"Nikolaos","family":"Kotsiou","sequence":"additional","affiliation":[{"name":"2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sofia","family":"Chissan","sequence":"additional","affiliation":[{"name":"2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Theodosia","family":"Papadopoulou","sequence":"additional","affiliation":[{"name":"2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sofia","family":"Vakalopoulou","sequence":"additional","affiliation":[{"name":"2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2024,5,29]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1773","DOI":"10.1056\/NEJM200106073442307","article-title":"The hemophilias: From royal genes to gene therapy","volume":"344","author":"Mannucci","year":"2001","journal-title":"N. Engl. J. Med."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"560","DOI":"10.1055\/s-0037-1615621","article-title":"Definitions in hemophilia. Recommendation of the scientific subcommittee on factor VIII and factor IX of the scientific and standardization committee of the International Society on Thrombosis and Haemostasis","volume":"85","author":"White","year":"2001","journal-title":"Thromb. Haemost."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"2","DOI":"10.1111\/ejh.12369","article-title":"Outcome measures in haemophilia: A systematic review","volume":"76","author":"Boehlen","year":"2014","journal-title":"Eur. J. Haematol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"51","DOI":"10.15256\/joc.2011.1.2","article-title":"Haemophilia and joint disease: Pathophysiology, evaluation, and management","volume":"1","author":"Knobe","year":"2011","journal-title":"J. Comorbidity"},{"key":"ref_5","first-page":"44","article-title":"Joint disease in haemophilia: Pathophysiology, pain and imaging","volume":"21","author":"Holstein","year":"2018","journal-title":"Haemophilia"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1111\/j.1365-2516.2007.01505.x","article-title":"Quality of life and sports activities in patients with haemophilia","volume":"13","year":"2007","journal-title":"Haemophilia"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"187","DOI":"10.1016\/S0140-6736(15)01123-X","article-title":"The past and future of haemophilia: Diagnosis, treatments, and its complications","volume":"388","author":"Peyvandi","year":"2016","journal-title":"Lancet"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"28915","DOI":"10.3402\/qhw.v10.28915","article-title":"Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study","volume":"10","author":"Palareti","year":"2015","journal-title":"Int. J. Qual. Stud. Health Well Being"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"894","DOI":"10.1055\/s-0035-1552564","article-title":"Assessing activities, participation, and quality of life in hemophilia: Relevance, current limitations, and possible options","volume":"41","author":"David","year":"2015","journal-title":"Semin. Thromb. Hemost."},{"key":"ref_10","doi-asserted-by":"crossref","unstructured":"The WHOQOL Group (1993). Study protocol for the World Health Organisation project to develop a quality-of-life assessment instrument (WHOQOL). Qual. Life Res., 2, 153\u2013159.","DOI":"10.1007\/BF00435734"},{"key":"ref_11","first-page":"143","article-title":"Quality of life: Definition, conceptualization and implications\u2014A methodologist\u2019s view","volume":"6","author":"Bullinger","year":"1991","journal-title":"Theor. Surg."},{"key":"ref_12","first-page":"6","article-title":"Measurement of Quality of Life and the European model","volume":"24","author":"Yfantopoulos","year":"2007","journal-title":"Arch. Hell. Med."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"e101","DOI":"10.1111\/j.1365-2516.2011.02683.x","article-title":"Psychosocial aspects of haemophilia: A systematic review of methodologies and findings","volume":"18","author":"Cassis","year":"2012","journal-title":"Haemophilia"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1111\/j.1365-2516.2005.01077.x","article-title":"An exploration of health-related quality of life in adults with haemophilia: A qualitative perspective","volume":"11","author":"Beeton","year":"2005","journal-title":"Haemophilia"},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"e154","DOI":"10.1111\/j.1365-2516.2012.02771.x","article-title":"Why should we care about quality of life in persons with haemophilia?","volume":"18","author":"Aledort","year":"2012","journal-title":"Haemophilia"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1182\/asheducation-2013.1.52","article-title":"What is the role of prophylaxis in the improvement of health-related quality of life of patients with hemophilia?","volume":"2013","author":"Buchbinder","year":"2013","journal-title":"Hematol. Am. Soc. Hematol. Educ. Program"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1500","DOI":"10.1007\/s11096-021-01270-x","article-title":"Association between reported medication adherence and health-related quality of life in adult patients with haemophilia","volume":"43","author":"Bago","year":"2021","journal-title":"Int. J. Clin. Pharm."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"3450","DOI":"10.1016\/j.jtha.2023.08.032","article-title":"Health-related quality of life following valoctocogene roxaparvovec gene therapy for severe hemophilia A in the phase 3 trial GENEr8-1","volume":"21","author":"Dunn","year":"2023","journal-title":"J. Thromb. Haemost."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"535","DOI":"10.1056\/NEJMoa067659","article-title":"Prophylaxis versus episodic treatment to prevent joint disease in boys with severe haemophilia","volume":"357","author":"Abshire","year":"2007","journal-title":"N. Engl. J. Med."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"498","DOI":"10.1046\/j.1365-2516.1998.440498.x","article-title":"European Socioeconomic Study Group. Resource utilization in haemophiliacs treated in Europe: Results from the European study on socioeconomic aspects of haemophilia care","volume":"4","author":"Szucs","year":"1998","journal-title":"Haemophilia"},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1111\/j.1365-2516.2008.01709.x","article-title":"Quality of life in haemophilia","volume":"14","author":"Gringeri","year":"2008","journal-title":"Haemophilia"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"743","DOI":"10.1111\/hae.14989","article-title":"Anxiety and depression among adults with haemophilia A: Patient and physician reported symptoms from the real-world European CHESS II study","volume":"30","author":"Blenkiron","year":"2024","journal-title":"Haemophilia"},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"e344","DOI":"10.1111\/hae.13548","article-title":"Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults","volume":"24","author":"Pinto","year":"2018","journal-title":"Haemophilia"},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"557","DOI":"10.1111\/hae.14571","article-title":"Pain, depression and anxiety in people with haemophilia from three Nordic countries: Cross-sectional survey data from the MIND study","volume":"28","author":"Winding","year":"2022","journal-title":"Haemophilia"},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"A127","DOI":"10.1016\/S1098-3015(10)67535-3","article-title":"The COCHE Study Group. Assessment of health-related quality of life in patients with haemophilia with the newly developed haemophilia-specific instrument (Haem-A-QoL)","volume":"8","author":"Scalone","year":"2005","journal-title":"Value Health"},{"key":"ref_26","first-page":"115","article-title":"Validation of the haemophilia-specific quality of life questionnaire for adult patients with haemophilia (Haem-A-QoL)","volume":"20","author":"Gringeri","year":"2005","journal-title":"Haematologica"},{"key":"ref_27","unstructured":"Haemo-QoL Group (2019, February 01). Scoring Manual. Available online: http:\/\/www.haemoqol.de."},{"key":"ref_28","first-page":"e73","article-title":"Cross-cultural adaptation and linguistic validation of age group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents","volume":"19","author":"Campos","year":"2013","journal-title":"Haemophilia"},{"key":"ref_29","first-page":"165","article-title":"Prophylaxis in haemophilia should be life-long","volume":"10","author":"Makris","year":"2012","journal-title":"J. Blood Transfus."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"868","DOI":"10.1111\/j.1365-2516.2012.02863.x","article-title":"Prevalence of depression in adults with haemophilia","volume":"18","author":"Iannone","year":"2012","journal-title":"Haemophilia"},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"1577","DOI":"10.2147\/PPA.S212723","article-title":"Interrelationship between depression, anxiety, pain, and treatment adherence in haemophilia: Results from a US cross sectional survey","volume":"13","author":"Witkop","year":"2019","journal-title":"Patient Prefer. Adherence"},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"780","DOI":"10.1111\/j.1538-7836.2009.03318.x","article-title":"Health status and quality of life of elderly persons with severe haemophilia born before the advent of modern replacement therapy","volume":"7","author":"Siboni","year":"2009","journal-title":"J. Thromb. Haemost."},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"1811","DOI":"10.1182\/blood-2007-07-102202","article-title":"Social participation of patients with hemophilia in the Netherlands","volume":"111","author":"Plug","year":"2008","journal-title":"Blood"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"243","DOI":"10.2147\/PROM.S211339","article-title":"Haemophilia and sexual health: Results from the HERO and B-HERO-S studies","volume":"10","author":"Blamey","year":"2019","journal-title":"Patient Relat. Outcome Meas."},{"key":"ref_35","doi-asserted-by":"crossref","unstructured":"Varaklioti, A., Kontodimopoulos, N., Katsarou, O., and Niakas, D. (2014). Psychometric properties of the Greek Haem-A-QoL for measuring quality of life in Greek haemophilia patients. Biomed. Res. Int., 2014.","DOI":"10.1155\/2014\/968081"},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"815","DOI":"10.1177\/1076029617733041","article-title":"Health-Related Quality of Life and Association With Arthropathy in Greek Patients with Hemophilia","volume":"24","author":"Varaklioti","year":"2018","journal-title":"Clin. Appl. Thromb. Hemost."},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"44","DOI":"10.3109\/08880018.2010.489933","article-title":"Haemophilia-Specific Quality of Life Index (Haemo-QoL and Haem-A-QoL questionnaires) of children and adults: Result of a single center from Turkey","volume":"27","author":"Mercan","year":"2010","journal-title":"Pediatr. Hematol. Oncol."},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1016\/j.htct.2019.03.010","article-title":"Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haem-A-Qol questionnaires","volume":"41","author":"Trindade","year":"2019","journal-title":"Hematol. Transfus. Cell Ther."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"314","DOI":"10.5581\/1516-8484.20130108","article-title":"Health-related quality of life in hemophilia: Results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center","volume":"35","author":"Ferreira","year":"2013","journal-title":"Rev. Bras. Hematol. Hemoter."},{"key":"ref_40","doi-asserted-by":"crossref","unstructured":"Baek, H.J., Park, Y.S., Yoo, K.Y., Cha, J.H., Kim, Y.J., and Lee, K.S. (2020). Health-related quality of life of moderate and severe haemophilia patients: Results of the haemophilia-specific quality of life index in Korea. PLoS ONE, 15.","DOI":"10.1371\/journal.pone.0238686"},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"257","DOI":"10.4103\/jehp.jehp_249_19","article-title":"Health-related quality of life of hemophilics and its possible correlates: A perspective in health promotion and disability prevention","volume":"8","author":"Das","year":"2019","journal-title":"J. Educ. Health Promot."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"1073","DOI":"10.1177\/1076029618758954","article-title":"Health-Related Quality of Life and Psychological Aspects of Adults with Hemophilia in Iran. Clinical and applied thrombosis\/hemostasis","volume":"24","author":"Rambod","year":"2018","journal-title":"Clin. Appl. Thromb. Hemost."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"398","DOI":"10.1111\/hae.14270","article-title":"Health-related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors-A non-interventional study","volume":"27","author":"Oldenburg","year":"2021","journal-title":"Haemophilia"}],"container-title":["Life"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2075-1729\/14\/6\/697\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T14:49:55Z","timestamp":1760107795000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2075-1729\/14\/6\/697"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,5,29]]},"references-count":43,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2024,6]]}},"alternative-id":["life14060697"],"URL":"https:\/\/doi.org\/10.3390\/life14060697","relation":{},"ISSN":["2075-1729"],"issn-type":[{"value":"2075-1729","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,5,29]]}}}