Quality of life in a population with haemophilia: A cross-sectional study from a single haemophilia treatment center

Castaño, Alexandra Fuenmayor; Restrepo, Mauricio; Salinas-Durán, Fabio

doi:10.1016/j.rcreue.2017.04.002

Cited by 3 publications

(3 citation statements)

References 27 publications

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“…Joint bleeding leads to arthropathy, haemorrhagic shock, neurocognitive defects, and even death [ 11 ]. Haemophilia is a chronic disease that, without adequate treatment, generates disability, which impacts the quality of life of patients who suffer from it [ 19 ]. Approximately 70–80% of bleeding episodes affect the joints and cause hemarthrosis and haemophilic arthropathy [ 12 ].…”

Section: Haemophilia Amentioning

confidence: 99%

Haemophilia A: A Review of Clinical Manifestations, Treatment, Mutations, and the Development of Inhibitors

et al. 2023

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The purpose of this narrative review was to provide an overview that allows readers to improve their understanding of hemophilia A, which is considered a genetic disease with a high impact on the quality of life of people who suffer from it is considered one of the diseases with the highest cost for health systems (In Colombia it is part of the five diseases with the greatest economic impact). After this exhaustive review, we can see that the treatment of hemophilia is on the way to precision medicine, which involves genetic variables specific to each race and ethnicity, pharmacokinetics (PK), as well as environmental factors and lifestyle. Knowing the impact of each of these variables and their relationship with the efficacy of treatment (prophylaxis: regular infusion of the missing clotting factor VIII in order to prevent spontaneous bleeding) will allow for individualizing the medical behavior in a cost-effective way. For this is required to build more strong scientific evidence with statistical power that allows us to infer.

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Section: Haemophilia Amentioning

confidence: 99%

Haemophilia A: A Review of Clinical Manifestations, Treatment, Mutations, and the Development of Inhibitors

et al. 2023

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“…Adult patients with haemophilia have poorer social, physical, and emotional function and performance than their healthy peers 7 . Wiley et al 8 .…”

Section: Introductionmentioning

confidence: 99%

“…6 Adult patients with haemophilia have poorer social, physical, and emotional function and performance than their healthy peers. 7 Wiley et al 8 described the difficulties of patients and their families regarding time management and logistical challenges associated with medication.…”

Section: Introductionmentioning

confidence: 99%

Occupational therapy in the management of haemophilia patients: A scoping review

Seoane‐Martín,

Cuesta‐Barriuso,

Rodríguez‐Martínez

2023

Haemophilia

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BackgroundHaemophilia is a haematological disease, although most haemorrhages occur in the locomotor system. Patients are physically disabled from an early age and have a poorer perception of quality of life. In the day‐to‐day lives of patients and their families, psychosocial well‐being, the disease's physical, personal, and social impact, as well as work‐related problems are the most complicated aspects of the disease that need to be addressed.ObjectiveTo identify the role of occupational therapy in managing patients with haemophilia and to analyse the therapeutic potential of occupational therapy in treating these patients.MethodsA scoping review was conducted to identify the role of occupational therapy in managing patients with haemophilia and to analyse the therapeutic potential of occupational therapy in treating these patients. The review was registered in the international registry PROSPERO (Id: CRD42022319637). The databases consulted were SCOPUS, PubMed, PsycINFO, Web of Science and Science Direct, including all studies published until 14 August 2023.ResultsNo single study was found that specifically developed an occupational therapy intervention for patients with haemophilia. Measurement instruments have been identified, specific for patients with haemophilia and generic, that can be useful for the functional evaluation of these patients in the occupational therapy approach. Different studies showed the importance of multidisciplinary treatment, including occupational therapy.ConclusionsThe use of occupational therapy could be effective in improving autonomy and quality of life in haemophilia patients. Therefore, it is of paramount importance to conduct research studies within the field of occupational therapy.

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Exercise capacity in people with haemophilia: A systematic review

et al. 2022

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Introduction Exercise capacity has been established as a protective factor against joint impairment in people with haemophilia (PWH). However, little is known about how exercise capacity is affected in PWH. Aim To analyse exercise capacity, as assessed by standardised laboratory or field tests in PWH. Methods A systematic review was conducted to identify manuscripts investigating physical capacity in PWH. An electronic search of PubMed/MEDLINE, Embase, Web of Science, CENTRAL and CINAHL was conducted from inception to 13 April, 2022. Two independent reviewers performed data extraction and assessed study quality using the critical appraisal tools of the Joanna Briggs Institute. Results Nineteen studies with 825 patients were included. Most studies used the six‐min walk test (6MWT) or peak/maximal oxygen consumption (VO2max). In children, the distance walked ranged from 274 ± 36.02 to 680 ± 100 m. In adults, the distance walked ranged from 457.5 ± 96.9 to 650.9 ± 180.3 m. VO2max ranged from 37 ± 8 to 47.42 ± 8.29 ml kg–1 min–1. Most studies reported lower values of exercise capacity compared to standardised values. Overall, the quality of the studies was moderate. Conclusion Most of the studies showed that PWH have lower exercise capacity compared to reference values of 6MWT or VO2max. Based on these results, it is necessary to emphasise in both the promotion and the prescription of physical exercise in PWH.

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Quality of life in a population with haemophilia: A cross-sectional study from a single haemophilia treatment center

Cited by 3 publications

References 27 publications

Haemophilia A: A Review of Clinical Manifestations, Treatment, Mutations, and the Development of Inhibitors

Haemophilia A: A Review of Clinical Manifestations, Treatment, Mutations, and the Development of Inhibitors

Occupational therapy in the management of haemophilia patients: A scoping review

Exercise capacity in people with haemophilia: A systematic review

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