&lt;p&gt;Correlations between patient-reported outcomes and self-reported characteristics in adults with hemophilia B and caregivers of children with hemophilia B: analysis of the B-HERO-S study&lt;/p&gt;

Buckner, Tyler W.; Sidonio, Robert F.; Witkop, Michelle; Guelcher, Christine; Cutter, Susan; Iyer, N.C.; Cooper, David L.

doi:10.2147/prom.s219166

Cited by 5 publications

(10 citation statements)

References 31 publications

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“…34 When it comes to how hemophilia affects relationships, a research found that PWH reports negative experiences when telling friends about hemophilia and being bullied by peers due to hemophilia. 35 This was proven with reduced overall health and physical function and increased pain scores results from the study. Furthermore, 37% of young adults with hemophilia (YA-PWH) has impacted their ability to build intimate relationships with a partner or future partner and 36% of YA-PWH experienced negative outcomes upon telling their friends about having hemophilia.…”

Section: Psychosocial Impact On Hemophilia Patientsmentioning

confidence: 71%

“…Another reason could be due to the relationship issues of YA-PWH with their friends or partners. 35,36 More than 50% of adult respondents reported of mild or worse depression. Adults with hemophilia reported with 41% of moderate to severe depression/anxiety.…”

Section: Psychosocial Impact On Hemophilia Patientsmentioning

confidence: 99%

“…Adults with hemophilia reported with 41% of moderate to severe depression/anxiety. 35 There are significant percentages of PWH having mental health issues which should be addressed appropriately during treatments by providing counseling and therapy sessions.…”

Section: Psychosocial Impact On Hemophilia Patientsmentioning

confidence: 99%

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The key complications of hemophilia and recent advancements in their management: an update

et al. 2021

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Hemophilia A is an X-linked recessive disorder which is due to factor VIII deficiency. It is a life-threatening coagulation disorder leading to complications including hemophilic-arthropathy, development of inhibitors, transfusion-related infections and profound psychosocial impact on the life of the patients. The aim of this study is to analyze the challenges in complications and the latest advancements in managing those complications. A thorough and systemic literature review was done to fulfill the objective of this study. The emergence of hemophilic arthropathy due to repeated symptoms of hemarthrosis is the most frequent complication found in haemophiliacs. Another critical complication, mainly seen in resource-poor settings is the development of lethal and severe bleeding episodes including episodes of intracranial hemorrhage. The development of inhibitors is another major challenge which often adds profoundly to the financial burden faced by hemophilia patients. Another major challenge is acquiring various transfusion-transmitted infections which was particularly more common few decades back. Studies also have revealed that there are myriads of significant psychosocial effects affecting the quality of life of hemophiliacs. Emerging treatments such as gene therapy, non-clotting factor concentrate products and extended half-life therapy can usher a new era in the management and the quality of life in hemophilia patients.

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Section: Psychosocial Impact On Hemophilia Patientsmentioning

confidence: 71%

Section: Psychosocial Impact On Hemophilia Patientsmentioning

confidence: 99%

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The key complications of hemophilia and recent advancements in their management: an update

et al. 2021

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“…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%

“…Most research agrees with the idea that specific factors in the medical history can determine a decline in specific components of HRQoL, such as physical activity, physical health, and social and interpersonal functioning. [2][3][4][5] Other studies underlined the role of factors such as work status and perceived physical pain.6,7 Nevertheless, many problems are still associated with older adults affected by age-related comorbidities (diabetes, cardiovascular and respiratory diseases, renal insufficiency, cancer, etc.) that require specialized medical and psychological interventions.…”

Section: Introductionmentioning

confidence: 99%

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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The emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia community

et al. 2023

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Introduction: Mothers of children with haemophilia (CWH) experience guilt related to this genetic condition. Several factors contributing to maternal guilt have been identified, but the scope and extent of guilt have not previously been quantified. Aim: This study provides insight into the experience of mothers of CWH and how they perceive and manage guilt. It then identifies the most common and helpful coping mechanisms. Methods: Between May and October 2021, we distributed an anonymous electronic survey to mothers of CWH. The Parent Experience of Child Illness measured maternal guilt, the PROMIS Parent Proxy for Life Satisfaction measured perception of their child's life satisfaction and additional questions explored specific guilt factors and coping strategies.Results: Eighty-seven mothers responded to the survey. Forty percent of mothers experienced increased guilt. The most common reasons for guilt included putting their child through pain during infusions and passing on the affected X chromosome.Perceived life satisfaction, increased age and genetic counselling were associated with less guilt. The most common coping strategies involved utilizing social support, self-education and connecting with other mothers in the community. Conclusion:Some mothers experienced increased feelings of guilt, illustrating the need for providers to tactfully provide anticipatory guidance and counselling. Tangible manifestations of haemophilia were more likely to trigger feelings of guilt than familial factors. Community immersion was beneficial, as other mothers in the community served as a source of social and educational support. Most mothers did not report guilt, illustrating the adaptability and resilience of the haemophilia community.

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<p>Correlations between patient-reported outcomes and self-reported characteristics in adults with hemophilia B and caregivers of children with hemophilia B: analysis of the B-HERO-S study</p>

Cited by 5 publications

References 31 publications

The key complications of hemophilia and recent advancements in their management: an update

The key complications of hemophilia and recent advancements in their management: an update

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

The emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia community

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