Identified unmet needs and proposed solutions in mild‐to‐moderate haemophilia: A summary of opinions from a roundtable of haemophilia experts

Walsh, Christopher E.; Boggio, Lisa; Brown-Jones, Lanette; Miller, Ronald H.; Hawk, Sarah; Savage, Brittany; Hansen, Kerry; Molter, Don; Baumann, Kim; Dunn, Spencer; Skinner, Mark W.; Haugstad, Kimberly; Johnson, Stormy; Davenport, Tammy; Bradbury, Margaret; Witkop, Michelle; Saad, Hossam; Cooper, David L.

doi:10.1111/hae.14168

Cited by 12 publications

(36 citation statements)

References 22 publications

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“…Additional information on these ideas and others can be found in this supplement. 35 Many patients with mild-to-moderate haemophilia in both studies reported haemophilia-related pain and functional impairment.…”

Section: Discussionmentioning

confidence: 96%

Impact of haemophilia on patients with mild‐to‐moderate disease: Results from the P‐FiQ and B‐HERO‐S studies

et al. 2021

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Multiple studies have been conducted to determine the psychosocial and physical impact of haemophilia on patients and their caregivers. 1-9 Many of these studies focused only on men or severe haemophilia 1,3,4,6-9 ; however, epidemiologic studies suggest that joint bleeding occurs in patients with mild-to-moderate haemophilia, 10-12 including women and girls. 13-15 Importantly, some bleeds result in impairments in joint function and significantly influence quality of life. 16-18

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Section: Discussionmentioning

confidence: 96%

Impact of haemophilia on patients with mild‐to‐moderate disease: Results from the P‐FiQ and B‐HERO‐S studies

et al. 2021

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“…Potential solutions to these challenges were improved diagnostic guidelines, enhanced educational materials for patients, additional studies and scientific publications, and revised transition guidelines. 22 The conclusions of each of these articles reinforce the need for further research on mild-to-moderate haemophilia in both men and women and underscore the necessity for additional resources for this patient population.…”

Section: Women With Haemophiliamentioning

confidence: 85%

Current challenges for men and women with mild‐to‐moderate haemophilia

Rajpurkar

Forsyth²,

Manco‐Johnson

2021

Haemophilia

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Current treatments in the field of haemophilia are changing the phenotype of many patients with severe haemophilia to that of mild haemophilia. Although this has the potential to improve the quality of life of these patients, 1 many unmet needs remain in patients with mild-to-moderate haemophilia. Bleeding phenotypes in patients with mild-to-moderate haemophilia A, especially those with high-moderate haemophilia (factor VIII [FVIII] levels >2%), are variable; many patients only experience bleeding after trauma. 2 Therefore, these individuals may lack the ability to recognize a bleed and to self-infuse factor treatments, leading to musculoskeletal complications, including poor joint outcomes. Importantly, patients with mild-to-moderate haemophilia A or haemophilia B are often not included in or a focus of clinical trials 3 ; thus, there is a need for large, prospective studies to assess which patients could benefit from innovative treatments and to identify outcomes for this patient population. 2 | UNI QUE AT TRIBUTE S OF PATIENTS WITH MILD-TO-MODER ATE HAEMOPHILIA Patients with mild-to-moderate haemophilia possess several unique attributes, including a challenging diagnosis, variability in bleeding symptoms and treatment needs, and disease complications. Diagnosis of mild-to-moderate haemophilia A is often difficult, owing to significant variability in FVIII levels and bleeding symptoms. 4 Notably, the diagnosis may be missed or delayed as a consequence of normal screening test results. 3,5 Therefore, many patients with mild-to-moderate haemophilia are diagnosed at an older age than those with severe haemophilia; diagnosis usually occurs after a trauma or surgery. 4,5 In patients with moderate and severe haemophilia A, FVIII levels are generally concordant when measured by one-stage or chromogenic clotting factor assays. However, in approximately 30% of patients with mild haemophilia A, discrepancy in the one-stage and chromogenic assays may be seen. 6 This

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“…Financial problems and several medical appointments are concerns for people with CBDs. 24 Specifically, people with CBDs have many medi-cal appointments that complicate accommodating a regular dental appointment with their dentists. For example, it has been reported that the prevalence of the joint bleeding are 33% and 47% in children and 42% and 60% in adult with hemophilia A and B, respectively.…”

Section: Discussionmentioning

confidence: 99%

People with congenital bleeding disorders perspectives on why dentists refused to treat them: An exploratory qualitative study using a card sorting technique

Abed

Alsahafi

2022

Special Care in Dentistry

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This qualitative study aimed to assess people with congenital bleeding disorders (CBDs) perspectives on why their dentists refused to treat them. Methods: Using validated and reliable questions, people with CBDs were asked about their attitude toward dental visit and teeth brushing, perceived thought about dentists' knowledge and skill in treating them, perceived dental anxiety, and perceived barriers toward receiving dental services. Free text responses were added to report reasons of why people with CBDs could not brush their teeth sometimes and why the dentists refused to treat them. An open card sorting method was used to analyze participants free text reports. Results: A total of 30 participants were recruited for the purpose of this qualitative study (70% adults and 30% children). Hemophilia A affected the majority of both groups. The majority of participants (n = 20, 67%) reported that they have been refused to be treated by their dentists (71% of adults versus 56% of children, as reported by their parents, p-value = 0.398). Adult participants reported that they have been refused to be treated by dentists due to fear of dentists from uncontrolled gingival bleeding, their dentists' beliefs that no dental treatment required for them, their thoughts that their dentists will refuse to treat them and difficulty of accommodating the dental visit with other medical appointments. Parents of children reported other reasons such as parents did not ask for dental treatments, difficulty of dental treatment to dentists, young age of patient, and poor accessibility to dental services due to long waiting list. Fear of adult participants from uncontrolled gingival bleeding (n = 4, 57%) and poor compliance of children toward teeth brushing (n = 2, 29%) were the reasons behind why they could not brush their teeth sometimes. Conclusions: Among several reported reasons, fear of dentists from uncontrolled gingival bleeding was the most reported reason of why dentists refused to treat adults with CBDs. While other reasons were reported by parents of children with CBDs such as parents did not ask for dental treatment to their children,

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Identified unmet needs and proposed solutions in mild‐to‐moderate haemophilia: A summary of opinions from a roundtable of haemophilia experts

Cited by 12 publications

References 22 publications

Impact of haemophilia on patients with mild‐to‐moderate disease: Results from the P‐FiQ and B‐HERO‐S studies

Impact of haemophilia on patients with mild‐to‐moderate disease: Results from the P‐FiQ and B‐HERO‐S studies

Current challenges for men and women with mild‐to‐moderate haemophilia

People with congenital bleeding disorders perspectives on why dentists refused to treat them: An exploratory qualitative study using a card sorting technique

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