Quality of Life, Perception of Disease and Coping Strategies in Patients with Hemophilia in Spain and El Salvador: A Comparative Study

Cuesta‐Barriuso, Rubén; Torres-Ortuño, Ana; Nieto-Munuera, Joaquín; López‐Pina, José Antonio

doi:10.2147/ppa.s326434

Cited by 4 publications

(5 citation statements)

References 37 publications

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“…However, noteworthy aspects emerged by investigating the correlation between the scores of the other psychometric tests administered. Confirming what already emerged in previous studies, the state of health appears to have an inverse correlation with two global indices of the SCL-90-R. 4 , 5 , 28 – 30 This information describes the tendency to suffer psychologically more, as the decline in quality of life, in terms of limitations deriving from the physical disease, increases. Furthermore, confirming previous studies, the HRQoL appears to have an inverse correlation with most psychological symptoms, such as anxiety, phobic anxiety, depression, obsessions and compulsions, interpersonal hypersensitivity, and somatic complaints.…”

Section: Discussionsupporting

confidence: 85%

“…For instance, Cuesta-Barriuso et al found significant differences between a group of PWH with HIV/HCV and the group without co-infections in HRQoL perceptions, concluding that the emotional representation of the disease plays an influential role. 28 Consistent with this assumption, other authors explained this association with the assumption that the HRQoL would be influenced by the level of acceptance of the infection and the ability to adapt to illness. 38,41,42,43 Our study underlines another aspect referred to as the HRQoL.…”

Section: Resultsmentioning

confidence: 79%

“…Furthermore, confirming previous studies, the HRQoL appears to have an inverse correlation with most psychological symptoms, such as anxiety, phobic anxiety, depression, obsessions and compulsions, interpersonal hypersensitivity, and somatic complaints. [3][4][5][28][29][30]35 Moreover, even the scores of paranoid ideation and psychoticism appear to have an inverse relationship with the HRQoL, highlighting the additional load of hostility, suspiciousness, withdrawal, and social isolation on the state of health. However, due to our study's small sample size, it is impossible to define the causal role of the symptoms on the deterioration of the HRQoL.…”

Section: Resultsmentioning

confidence: 99%

“…26 Consistent with what has already been widely described in the literature, the diagnosis of hemophilia is envisaged as an obstacle in the life of these people who perceive a limitation of their activities in favor of the protection of their body. 5,6,[27][28][29] For instance, some authors argue that participation in activities, such as sports or crowded social events, is influenced by the fear of incurring injuries and bleeding. 30 Moreover, it has highlighted the role of behavioral precautions, the uncertainty of actions, and the fear of unexpected bleeding on depression, frustration, isolation, and embarrassment.…”

Section: Resultsmentioning

confidence: 99%

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Health Related Quality of Life and Psychopathological Symptoms in People With Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study

Schiavoni

Pruneti

Guidotti

et al. 2023

Mediterr J Hematol Infect Dis

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Background: The health-related quality of life (HRQoL) of people with hemophilia (PWH) is an important issue, especially considering people suffering from chronic diseases beyond hemophilia. The principal aim of this study was to investigate the presence and relevance of psychological symptoms, both internalizing and externalizing, lifestyle, and HRQoL in a group of Italian PWH with chronic bloodborne co-infections and comorbidities. Furthermore, the research describes the association between psychological aspects and the impact of disease-related characteristics (type of hemophilia, presence of co-infections, and comorbidities) on them. Methods: Seventy patients (mean age 46.77±11.3), 64 with severe hemophilia A (Factor VIII: C < 1 IU/dL) and 6 with severe hemophilia B (Factor IX <1 IU/dL), were consecutively recruited from seven Hemophilia Centers in Italy of Italian Association of Hemophilia Centers (AICE). In order to assess psychological symptoms, HRQoL, and lifestyle, three psychological questionnaires were administered (the SCL-90-R, SF-36, and PSQ, respectively). Results: A general decline in the quality of life and an increase in the tendency to adopt a lifestyle characterized by hyperactivity emerged. Inverse correlations were found between HRQoL and psychological distress. Although the SCL-90-R did not reveal symptoms above the clinical cut-off, co-infections significantly increased anxiety, depression, somatizations, paranoia, and social withdrawal. Lastly, HRQoL is impaired by co-infections as well as comorbidities. Conclusion: Our preliminary results must be confirmed to deepen the findings between mental health and hemophilia.

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Section: Discussionsupporting

confidence: 85%

Section: Resultsmentioning

confidence: 79%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Health Related Quality of Life and Psychopathological Symptoms in People With Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study

Schiavoni

Pruneti

Guidotti

et al. 2023

Mediterr J Hematol Infect Dis

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“…However, psychosocial treatment is deficient and poorly implemented, even in countries where pharmacological treatment is novel. 64 The severity phenotype of the pathology affects the quality of life of patients with hemophilia A and B, showing a poorer quality of life in patients with severe hemophilia, compared to those with mild or moderate phenotypes. 65 Patients with hemophilia who report pain have limitations in their mobility and autonomy, with increased anxiety, poorer quality of life and frustration due to restrictions in the performance of activities of daily living.…”

Section: Dovepressmentioning

confidence: 99%

Hemophilic Arthropathy: Barriers to Early Diagnosis and Management

Cuesta‐Barriuso¹,

Donoso-Úbeda²,

Meroño-Gallut³

et al. 2022

JBM

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Hemophilia is a congenital coagulopathy characterized by a deficiency of one of the clotting factors. It is characterized by the development of hematomas and hemarthrosis, either spontaneously or after minor trauma. The recurrence of hemarthroses leads to progressive and degenerative joint damage from childhood (hemophilic arthropathy). This arthropathy is characterized by disabling physical effects that limit the functionality and quality of life of these patients. Medical progress achieved over the last decade in the drug treatment of hemophilia has improved the medium and long-term prospects of patients with more effective and long-lasting drugs. The universal use of safer, more effective and prolonged prophylactic treatments may promote the prevention of bleeding, and also therefore, of the development of hemarthrosis and joint damage. A number of imaging instruments have been developed for the assessment of hemarthrosis and hemophilic arthropathy, using ultrasound, magnetic resonance imaging and simple radiology. Different physical examination scores and questionnaires allow the assessment of joint health, self-perceived activity and functionality of patients with hemophilia. The approach to these patients should be interdisciplinary. Assessment of the processes that affect pain in these patients and the development of pain education models should be implemented. Expert advice and information to patients with hemophilia should be based on individual functional prevention diagnoses, advice on available therapies and sports practice, as well as health recommendations.

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Humanistic burden of haemophilia A without inhibitors: A cross‐sectional analysis of the HemoLIFE study

Álvarez‐Román,

Nuñez Vazquez,

Benitez Hidalgo

et al. 2024

Haemophilia

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AimTo evaluate the impact of haemophilia A without inhibitors on humanistic outcomes in patients and caregivers. Herein, we report a cross‐sectional analysis of the baseline data of persons with haemophilia (PWH) participating in the prospective study HEMOLIFE.MethodsThese data are part of a prospective, observational, and multicentre study currently being conducted in 20 hospitals in Spain by haematologists. We included subjects 12 years or older diagnosed with haemophilia. The evaluations included the Maladjustment Scale, Haemophilia–Specific Quality of Life Questionnaire for Adults (HaemoQol)/HaemoQol Short Form (Children), haemophilia‐specific version of the Work Productivity and Impairment Questionnaire plus the Classroom Impairment Questionnaire (WPAI+CIQ:HS), Haemophilia Activity List (HAL)/Paediatric Haemophilia Activities List (pedHAL), visual analogue scale (VAS) for evaluating pain, Coping Pain Questionnaire–Reduced (CAD‐R), and Hospital Anxiety and Depression Scale (HADS).ResultsA total of 81 PWH were recruited at 18 centres; 66 PWH were ≥18 years (i.e., adults), and PWH 15 were <18 years (i.e., paediatric patients). Out of the 79 evaluable subjects, 16 (20%) showed an impact of haemophilia on daily life, and the areas most affected were “leisure time” (58% showed maladjustment) and “work/studies” (47% showed maladjustment). Patients reported a higher impact of haemophilia on quality of life (mean [SD] of the transformed score) in the dimensions of “sport” (49.4 [28.6]), “physical health” (40.5 [25.8]) and “future” (37.7 [28.9]). In adults, according to HAL scores, greater impairment of function was observed in “lying/sitting/kneeling/standing,” “function of legs” and “leisure activities and sports,” with mean normalized scores of 64.7, 65.1 and 69.0, respectively. Productivity was mostly impacted by presenteeism. The pain was infrequent and moderate. According to the HADS scores, nine (11.5%) patients had clinical anxiety and depression.ConclusionPWH without inhibitors exhibited impairments in adjustment, quality of life and functionality, especially related to leisure and sports activities, and exhibit relevant levels of anxiety and depression.

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Quality of Life, Perception of Disease and Coping Strategies in Patients with Hemophilia in Spain and El Salvador: A Comparative Study

Cited by 4 publications

References 37 publications

Health Related Quality of Life and Psychopathological Symptoms in People With Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study

Health Related Quality of Life and Psychopathological Symptoms in People With Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study

Hemophilic Arthropathy: Barriers to Early Diagnosis and Management

Humanistic burden of haemophilia A without inhibitors: A cross‐sectional analysis of the HemoLIFE study

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