Quality of Life in hematology: European Hematology Association theme of the year ... and years to come

Chomienne, Christine; Guenova, Margarita; Hagenbeek, Anton; Lacombe, Catherine; McCann, Shaun R.; Salek, Sam; Geißler, Jan; Beek, Ineke van der

doi:10.3324/haematol.2012.080796

Cited by 8 publications

(6 citation statements)

References 2 publications

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“…This finding is important to consider in the need for a patient‐centred care approach when treating people with VWD. There is a vital need for reporting patient‐related outcomes, as highlighted by the European Hematology Association, as an initiative for improving quality of life in patients with haematological disorders …”

Section: Discussionmentioning

confidence: 99%

An international survey to inform priorities for new guidelines on von Willebrand disease

et al. 2019

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Introduction: von Willebrand disease (VWD) is an inherited bleeding disorder caused by a quantitative or qualitative dysfunction of von Willebrand factor. Clinicians, patients and other stakeholders have many questions about the diagnosis and management of the disease. Aim: To identify topics of highest importance to stakeholders that could be addressed by guidelines to be developed by the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF) and the World Federation of Hemophilia (WFH). Methods: A survey to determine and prioritize topics to be addressed in the collaborative development of guidelines for VWD was distributed to international stakeholders including patients, caregivers and healthcare providers (HCPs). Representatives of the four organizations coordinated the distribution strategy. The survey focused on both diagnosis and management of VWD, soliciting 7-point Likert-scale responses and open-ended comments, in English, French and Spanish. We conducted descriptive analysis with comparison of results by stakeholder type, gender and countries' income classification for the rating questions and qualitative conventional content data analysis for the open-ended responses.Results: A total of 601 participants responded to the survey (49% patients/caregivers and 51% healthcare providers). The highest priority topics identified were diagnostic criteria/classification, bleeding assessment tools and treatment options for women and surgical patients. In contrast, screening for anaemia and differentiating plasmaderived therapy versus recombinant therapies received lower ratings. Conclusion:This survey highlighted areas of importance to a diverse representation of stakeholders in the diagnosis and management of VWD, providing a framework for future guideline development and implementation. K E Y W O R D Sbleeding disorders, guidelines, multidisciplinary, patient engagement, stakeholders, survey, von Willebrand disease | 107 KALOT eT AL.

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Section: Discussionmentioning

confidence: 99%

An international survey to inform priorities for new guidelines on von Willebrand disease

et al. 2019

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“…Of patients treated with 2 cycles of ABVD upfront, 80–85% have a negative interim PET/CT, and 15–20% have a positive scan defined as an uptake higher than in the liver. Escalation of therapy could salvage 60%–76% of these patients 20,21. A further follow-up is needed to evaluate if a high PFS is maintained in patients with negative interim PET/CT and whether radiation therapy could be omitted in patients treated with ABVD who had a bulky disease at diagnosis and a negative interim or end-of-therapy PET/CT.…”

Section: Use Of Interim Pet/ct For Tailoring Therapy In Advanced Hodgmentioning

confidence: 99%

Advanced Hodgkin Lymphoma: A New Era of Therapy

Dann¹

2014

Mediterr J Hematol Infect Dis

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Therapy of advanced Hodgkin lymphoma (HL) is a rapidly changing field due to a lot of currently emerging data. Treatment approaches are presently based on either the Kairos principle of giving aggressive therapy upfront and considering de-escalation of therapy if the interim PET/CT is negative or the Chronos principle of starting with ABVD followed by escalation of therapy for patients with positive interim PET/CT. The International Prognostic Score (IPS) is still valid for decision-making regarding the type of initial therapy, since patients with a high score do have an inferior progression free survival (PFS) with ABVD compared to those with a low score. Escalated BEACOPP administered upfront improves PFS; however, increase in the overall survival (OS) has not been confirmed yet, and this therapy is accompanied by elevated toxicity and fertility impairment. Completion of ongoing and currently initiated trials could elucidate multiple issues related to the management of HL patients.

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“…The 2-year PFS for PET-2-negative and -positive patients was 88% and 54%, respectively ( P =0.0009). 15 …”

Section: Introductionmentioning

confidence: 99%

Hodgkin Disease—An Ever-Evolving Therapy

Dann

2014

Rambam Maimonides Med J

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Therapy of Hodgkin lymphoma (HL) is a rapidly changing field due to plenty of currently emerging data. Treatment approaches are currently based on tailoring of therapy in order to achieve a maximal response with minimal toxicity. Since the median age of HL patients is 33 years and their prospective life expectancy of another half a century, a major emphasis needs to be put on dramatic reduction of later toxicity. The assessment of the treatment effect should be based not only on progression-free survival, but should include evaluation of cardiac toxicity, secondary neoplasms, and fertility in the long-term follow-up. The ancient principle “first do no harm” should be central in HL therapy. Completion of ongoing and currently initiated trials could elucidate multiple issues related to the management of HL patients.

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Quality of Life in hematology: European Hematology Association theme of the year ... and years to come

Cited by 8 publications

References 2 publications

An international survey to inform priorities for new guidelines on von Willebrand disease

An international survey to inform priorities for new guidelines on von Willebrand disease

Advanced Hodgkin Lymphoma: A New Era of Therapy

Hodgkin Disease—An Ever-Evolving Therapy

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