Patient/caregiver perceived benefits and barriers to elective orthopedic surgery (EOS) in patients with congenital hemophilia with inhibitors

DeKoven, Mitch; Wiśniewski, T.; Petrilla, Allison; Holot, Natalia; Lee, W C; Cooper, David L.

doi:10.3111/13696998.2011.647176

Cited by 4 publications

(4 citation statements)

References 21 publications

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“…The questionnaires most frequently used in the selected studies were as follows: EuroQol‐5 Dimension (EQ‐5D) questionnaire and SF‐36 . However, measurements of QoL were performed using also Impact on Family Scale (IOF), HA‐QoL, SF‐12v2, Male Sexual Health Questionnaire (MSHQ), and 11‐point Likert Scale .…”

Section: Resultsmentioning

confidence: 99%

The socioeconomic burden of patients affected by hemophilia with inhibitors

D’Angiolella

Cortesi

Rocino

et al. 2018

European J of Haematology

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Hemophilia is associated with a high financial burden on individuals, healthcare systems, and society. The development of inhibitors significantly increases the socioeconomic burden of the diseases. This study aimed to review and describe the burden of hemophilia with inhibitors, providing a reference scenario to assess the impact of new products in the real word. Two systematic literature reviews were performed to collect data on (i) health economics and (ii) health‐related quality of life evidences in hemophilic patients with inhibitors. The costs associated with patients with hemophilia and inhibitors are more than 3 times greater than the costs incurred in those without inhibitors, with an annual cost per patient that can be higher than €1 000 000. The costs of bypassing agents account for the large majority of the total healthcare direct costs for hemophilia treatment. The quality of life is more compromised in patients with hemophilia and inhibitors compared to those without inhibitors, in particular the physical domains, whereas mental domains were comparable to that of the general population. The development of an inhibitor has a high impact on costs and quality of life. New treatments have the potential to change positively the management and socioeconomic burden of hemophilia with inhibitors.

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Section: Resultsmentioning

confidence: 99%

The socioeconomic burden of patients affected by hemophilia with inhibitors

D’Angiolella

Cortesi

Rocino

et al. 2018

European J of Haematology

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“…18 Overall, factors which influence medical decision making in hemophilia care include proven and perceived risks, particularly infection and inhibitor development; proven and perceived benefits, particularly reduction in bleeding and improvement in mobility; prior patient experience; family history; patient preference regarding clotting factor mixing and administration; physician recommendation; treatment availability; and insurance coverage. [19][20][21][22][23][24][25] Scalone and colleagues evaluated patients', pharmacists' and physicians' preferences in choosing a treatment regimen for patients with inhibitors. 26 This study highlighted different preferences among providers and patients and importance of acknowledging patient views to optimize treatment outcomes.…”

Section: Implementation Of Shared Decision Makingmentioning

confidence: 99%

The role of patient and healthcare professionals in the era of new hemophilia treatments in developed and developing countries

Nossair

Thornburg

2018

Therapeutic Advances in Hematology

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Medical decisions in hemophilia care are primarily related to the type of factor replacement and treatment regimen. With the growing number of treatment options for patients with hemophilia, decision making is more complex and requires careful consideration of benefits, risks, and patient goals. Shared decision making and decision-aid tools facilitate patient and healthcare provider communication. In this review, the overall role of shared decision making in medicine is outlined, with special emphasis on models for practical implementation. Examples of shared decision making in hemophilia are outlined, and application to new therapeutics is discussed through a case-based approach.

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“…It is now accepted that surgery in patients with haemophilia and inhibitors can now be performed safely using bypassing agents . Despite the considerable experience and number of publications in this field, it is still that case that patients with inhibitors are denied elective surgery such as arthroplasty which could improve their quality of life . In part, this is because some treatment centres still harbour reservations about the potential for bleeding but it is also recognized that the initial high cost may be a considerable barrier.…”

Section: Recommendations Of the ‘Kreuth Iv’ Meetingmentioning

confidence: 99%

Kreuth IV: European consensus proposals for treatment of haemophilia with coagulation factor concentrates

et al. 2017

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Introduction This report summarizes recommendations relating to haemophilia therapy arising from discussions among experts from 36 European countries during the ‘Kreuth IV’ meeting in May 2016. Aim The objective of the meeting was for experts in the field of haemophilia from across Europe to draft resolutions regarding current issues relating to the treatment of haemophilia. Results Hospitals providing clinical care for people with haemophilia and related disorders are strongly recommended to seek formal designation as either European Haemophilia Treatment Centres (EHTC) or European Haemophilia Comprehensive Care Centres (EHCCC). There should be agreed national protocols or guidelines on management of the ageing patient with haemophilia. The minimum consumption of factor VIII and IX concentrate in any country should be 4 IU and 0.5 IU per capita of general population respectively. Treatment for hepatitis C with direct‐acting antiviral agents should be provided to all people with haemophilia on a priority basis. Genotype analysis should be offered to all patients with severe haemophilia. Genetic counselling, when given, should encompass the recommendation that genetic relatives of the affected person be advised to seek genetic counselling. People with inhibitors should have access to bypassing agents, immune tolerance and elective surgery. National or regional tenders for factor concentrates are encouraged. Outcome data including health related quality of life should be collected. Treatment with extended half‐life factors should be individualized and protection against bleeding should be improved by increasing trough levels. Steps should be taken to understand and minimize the risk of inhibitor development. Conclusion It is hoped that these recommendations will help to foster equity of haemophilia care throughout Europe.

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Patient/caregiver perceived benefits and barriers to elective orthopedic surgery (EOS) in patients with congenital hemophilia with inhibitors

Abstract: QoL improved for most inhibitor patients who reported having EOS. For those considering surgery, there is optimism about the potential benefits, but realistic concerns associated with bleed control and post-op complications.

Cited by 4 publications

References 21 publications

The socioeconomic burden of patients affected by hemophilia with inhibitors

The socioeconomic burden of patients affected by hemophilia with inhibitors

The role of patient and healthcare professionals in the era of new hemophilia treatments in developed and developing countries

Kreuth IV: European consensus proposals for treatment of haemophilia with coagulation factor concentrates

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