Determining the health‐related quality of life in individuals with haemophilia in developing economies: results from the Brazilian population

Salomon, Tassila; Chaves, Daniel Gonçalves; Brener, Stela; Martins, Paulo Roberto Juliano; Mambrini, Juliana V. M.; Peixoto, Sérgio Viana

doi:10.1111/hae.13130

Cited by 9 publications

(15 citation statements)

References 41 publications

(85 reference statements)

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“…Psychosocial factors related to haemophilia have a central role in the quality of life, work life and interpersonal relationships . Collection of local data provides important information and considers cultural aspects.…”

Section: Discussionmentioning

confidence: 99%

Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: Assessment of the psychosocial effects of haemophilia in patients and caregivers

Lorenzato

Santos²,

Fagundes³

et al. 2019

Haemophilia

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Introduction The international Haemophilia Experiences, Results and Opportunities (HERO) study assessed the psychosocial aspects of life for people with haemophilia (PWH) and their caregivers in several countries. Brazil was not included in this initiative. Aim and methods An observational, multicentre, cross‐sectional study was performed involving PWH (moderate‐to‐severe haemophilia) and their caregivers, from November 2014 to July 2015. The primary objective was to quantify the extent of the primary psychosocial factors affecting PWH in their everyday life. Descriptive statistics and comparisons between Brazilian and global respondents are presented. Results A total of 100 adult male PWH and 100 caregivers (responding on behalf of their oldest affected child aged <18 years) completed the survey. Sixty‐eight per cent of the PWH had haemophilia A without inhibitors. Chronic pain and hepatitis C were the most common conditions related to haemophilia. On the EQ‐5D assessment, 64% of PWH reported extreme/moderate pain. Treatment for depression or anxiety was reported by 18% of PWH and by 29% of caregivers. There was a lower employment rate for PWH in Brazil, compared to the countries included in the original HERO survey (51% vs 60%); 71% of PWH stated that haemophilia has a negative impact on their work. Over the previous 5 years, 58% of PWH and 68% of caregivers did not have difficulties in obtaining the concentrated factor for treatment. Conclusions Our study presents an overview of the psychosocial aspects of life with haemophilia in Brazil, providing a basis for health policy decisions and may further improve comprehensive care for PWH.

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Section: Discussionmentioning

confidence: 99%

Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: Assessment of the psychosocial effects of haemophilia in patients and caregivers

Lorenzato

Santos²,

Fagundes³

et al. 2019

Haemophilia

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“…In the recent decade, the overall QOL in individuals with hemophilia has drawn more attention. [ 18 19 20 ] While, participation of individuals with hemophilia in the sport, activities is considered a beneficial and helpful factor for improving QOL, reduced physical activities in hopes of reducing the risk of hemorrhage, is considered as a destructive agent in the quality of everyday life in individuals with hemophilia and their families. [ 21 22 ] On the other side of the coin, reduced bone density is a silent disease without any sign and symptom until a bone fracture occurs.…”

Section: Quality Of Life (Qol) In Hemophiliamentioning

confidence: 99%

Bone Density Status in Bleeding Disorders: Where Are We and What Needs to Be Done?

Mansouritorghabeh

Rezaieyazdi

2017

J Bone Metab

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Bleeding disorders, including hemophilia, can be seen in every ethnic population in the world. Among various bleeding disorders, reduced bone density has been addressed in hemophilia A. In recent years, there has been an increasing interest in addressing osteopenia and osteoporosis in hemophilia A. There is little or no study about the possible susceptibility of other individuals with bleeding disorders to reduced bone density. Questions have been raised about the role of blood coagulation factors in bone mineralization. This review provides new insight and ideas for further survey in the field of bleeding disorders and reduced bone density.

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“…Furthermore, the quality of life of patients with haemophilia can be affected by the uncertainty of the chronic disease, the lack of adherence to medical and pharmacological prescriptions and the incidence of haemorrhagic episodes 5. Prophylactic approaches have demonstrated to reduce in 53% the incidence of haemorrhagic complications of patients with haemophilia, and if these appear, early interventions can reduce their adverse effects on the patient’s general health and quality of life 5–7…”

Section: Introductionmentioning

confidence: 99%

Infected tooth extraction, bone grafting, immediate implant placement and immediate temporary crown insertion in a patient with severe type-B hemophilia

2019

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Haemorrhagic disorders combined with soft tissue inflammation and infection may lead to severe bleeding complications before, during or after dental treatment. In selected cases, a combined therapeutic approach involving clinical therapies and systemic and local medication could improve the treatment outcomes and the patient’s quality of life. This clinical case report, presents for the first time a successful combined approach, completed in a 38-year-old male patient with severe type-B haemophilia in which an infected tooth was extracted, an immediate implant was inserted, bone grafting was performed and early implant loading was successfully applied. In addition to the clinical therapy, medication was provided orally, systemically and locally, thus preventing the haemorrhagic complications and improving the patient’s quality of life.

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Determining the health‐related quality of life in individuals with haemophilia in developing economies: results from the Brazilian population

Cited by 9 publications

References 41 publications

Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: Assessment of the psychosocial effects of haemophilia in patients and caregivers

Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: Assessment of the psychosocial effects of haemophilia in patients and caregivers

Bone Density Status in Bleeding Disorders: Where Are We and What Needs to Be Done?

Infected tooth extraction, bone grafting, immediate implant placement and immediate temporary crown insertion in a patient with severe type-B hemophilia

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