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Evaluation of the sexual health in people living with hemophilia.
Germini F, Chai-Adisaksopha C, Pete D, Curtis R, Frick N, Nichol MB, Noone D, O'Mahony B, Page D, Stonebraker JS, Thabane L, Crowther MA, Skinner MW, Iorio A. Germini F, et al. Among authors: frick n. Haemophilia. 2021 Nov;27(6):993-1001. doi: 10.1111/hae.14410. Epub 2021 Sep 19. Haemophilia. 2021. PMID: 34538001
BACKGROUND: Knowledge about sexual health, difficulty with sexual activity and intimacy (sexual difficulty), in people with hemophilia is little understood. OBJECTIVES: The objectives were to determine the prevalence of sexual difficulty in people living with hemophilia …
BACKGROUND: Knowledge about sexual health, difficulty with sexual activity and intimacy (sexual difficulty), in people with hemophilia …
Non-severe haemophilia: Is it benign? - Insights from the PROBE study.
Chai-Adisaksopha C, Noone D, Curtis R, Frick N, Nichol MB, Germini F, O'Mahony B, Page D, Stonebraker JS, Skinner MW, Iorio A. Chai-Adisaksopha C, et al. Among authors: frick n. Haemophilia. 2021 Jan;27 Suppl 1:17-24. doi: 10.1111/hae.14105. Epub 2020 Sep 1. Haemophilia. 2021. PMID: 32870546
INTRODUCTION: There are limited data on the impact of haemophilia on health status and health-related quality of life (HRQL) in people with non-severe (mild and moderate) haemophilia. ...CONCLUSION: People affected by mild or moderate haemophilia report a sig …
INTRODUCTION: There are limited data on the impact of haemophilia on health status and health-related quality of life (HRQL) in peopl …
Impact of mild to severe hemophilia on engagement in recreational activities by US men, women, and children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study.
Baumann K, Hernandez G, Witkop M, Peltier S, Dunn S, Cutter S, Frick N, Haugstad K, Guelcher C, Frey MJ, Rotellini D, Clark DB, Iyer NN, Cooper DL. Baumann K, et al. Among authors: frick n. Eur J Haematol. 2017 Apr;98 Suppl 86:25-34. doi: 10.1111/ejh.12852. Eur J Haematol. 2017. PMID: 28319336 Clinical Trial.
The psychosocial impact of hemophilia on activities was recently investigated in the Hemophilia Experiences, Results and Opportunities (HERO) study (675 people with hemophilia and 561 caregivers of children with hemophilia in 10 countries). The impact …
The psychosocial impact of hemophilia on activities was recently investigated in the Hemophilia Experiences, Results and Oppor …
Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders.
Valentino LA, Baker JR, Butler R, Escobar M, Frick N, Karp S, Koulianos K, Lattimore S, Nugent D, Pugliese JN, Recht M, Reding MT, Rice M, Thibodeaux CB, Skinner M. Valentino LA, et al. Among authors: frick n. J Blood Med. 2021 Oct 21;12:897-911. doi: 10.2147/JBM.S325031. eCollection 2021. J Blood Med. 2021. PMID: 34707421 Free PMC article.
Rare, chronic diseases such as hemophilia and other congenital coagulation disorders require coordinated delivery of services for optimal outcomes. Hemophilia Treatment Centers (HTCs) are specialized, multidisciplinary health-care centers providing team-based care t …
Rare, chronic diseases such as hemophilia and other congenital coagulation disorders require coordinated delivery of services for opt …
Impact of hemophilia B on quality of life in affected men, women, and caregivers-Assessment of patient-reported outcomes in the B-HERO-S study.
Buckner TW, Witkop M, Guelcher C, Sidonio R, Kessler CM, Clark DB, Owens W, Frick N, Iyer NN, Cooper DL. Buckner TW, et al. Among authors: frick n. Eur J Haematol. 2018 Jun;100(6):592-602. doi: 10.1111/ejh.13055. Epub 2018 Apr 11. Eur J Haematol. 2018. PMID: 29505680
INTRODUCTION: Health-related quality of life (HRQoL) is impaired in patients with hemophilia; however, the impact in mild/moderate hemophilia B and affected women is not well characterized. ...RESULTS: In total, 299 adult patients and 150 caregivers participated. Ad …
INTRODUCTION: Health-related quality of life (HRQoL) is impaired in patients with hemophilia; however, the impact in mild/moderate …
Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study.
Buckner TW, Witkop M, Guelcher C, Frey MJ, Hunter S, Peltier S, Recht M, Walsh C, Kessler CM, Owens W, Clark DB, Frick N, Rice M, Iyer NN, Holot N, Cooper DL, Sidonio R Jr. Buckner TW, et al. Among authors: frick n. Eur J Haematol. 2017 Apr;98 Suppl 86:5-17. doi: 10.1111/ejh.12854. Eur J Haematol. 2017. PMID: 28319338 Clinical Trial.
The original Hemophilia Experiences, Results and Opportunities (HERO) qualitative study evaluated the needs of people with hemophilia A or B in multiple countries; however, a majority of participants had the more common moderate-severe hemophilia A. The B-HER …
The original Hemophilia Experiences, Results and Opportunities (HERO) qualitative study evaluated the needs of people with hemophi …
Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study.
Cutter S, Molter D, Dunn S, Hunter S, Peltier S, Haugstad K, Frick N, Holot N, Cooper DL. Cutter S, et al. Among authors: frick n. Eur J Haematol. 2017 Apr;98 Suppl 86:18-24. doi: 10.1111/ejh.12851. Eur J Haematol. 2017. PMID: 28319337 Clinical Trial.
The findings revealed that hemophilia had an impact for adults with moderate/severe hemophilia and caregivers of children with hemophilia. ...The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study evaluated the …
The findings revealed that hemophilia had an impact for adults with moderate/severe hemophilia and caregivers of children with …
Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire.
Chai-Adisaksopha C, Skinner MW, Curtis R, Frick N, Nichol MB, Noone D, O'Mahony B, Page D, Stonebraker J, Thabane L, Crowther M, Iorio A. Chai-Adisaksopha C, et al. Among authors: frick n. BMJ Open. 2018 Aug 8;8(8):e021900. doi: 10.1136/bmjopen-2018-021900. BMJ Open. 2018. PMID: 30093520 Free PMC article.
Participants were enrolled if they were more than 10 years old and people with haemophilia A or B or people without a bleeding disorder. Participants were invited through non-governmental patient organisations in 21 countries between 01/27/2016 and 02/23/2017. ...CONCLUSIO …
Participants were enrolled if they were more than 10 years old and people with haemophilia A or B or people without a bleeding disord …
Test-retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domains.
Chai-Adisaksopha C, Skinner MW, Curtis R, Frick N, Nichol MB, Noone D, O'Mahony B, Page D, Stonebraker J, Thabane L, Crowther MA, Iorio A. Chai-Adisaksopha C, et al. Among authors: frick n. Haemophilia. 2019 Jan;25(1):75-83. doi: 10.1111/hae.13649. Epub 2018 Dec 6. Haemophilia. 2019. PMID: 30520534
METHODS: The PROBE questionnaire covers four domains and is comprised of 29 questions. People with haemophilia (PWH) and participants without bleeding disorder were invited to participate in this study. ...On the questions common to PWH and participants without bleeding di …
METHODS: The PROBE questionnaire covers four domains and is comprised of 29 questions. People with haemophilia (PWH) and participants …
12 results