Patients' needs in hematology: whose perspectives?

Salek, Sam; Ionova, Tatyana I.; Olíva, Esther Natalie

doi:10.3324/haematol.2013.090399

Cited by 7 publications

(13 citation statements)

References 13 publications

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“…This study represents a large collaborative effort between the haematology organizations involved in the VWD guideline de- finding that is consistent with evidence from other studies in haematology. 27 Additionally, discussions among the VWD community continue regarding the most appropriate diagnostic algorithms including access to genetic testing which is part of the topic of diagnostic journey in this survey. As general practitioners are typically the first point of entry into the healthcare system, these results Regarding 'laboratory cut-offs for VWD-type 1', HCPs rated this topic higher than patients/caregivers.…”

Section: Discussionmentioning

confidence: 99%

“…This finding is consistent with other studies which emphasize the dilemmas physicians face when making a VWD diagnosis and their desire to have well-defined diagnostic thresholds. 28 Patients, however, are perhaps more concerned about the burden of their disease as highlighted by Salek et al, 27 than the lack of a well-defined threshold in the diagnosis of VWD. Our results underscore differences in the awareness among different stakeholders regarding the lack of standardized diagnostic threshold for VWD.…”

Section: Discussionmentioning

confidence: 99%

“…27 Additionally, discussions among the VWD community continue regarding the most appropriate diagnostic algorithms including access to genetic testing which is part of the topic of diagnostic journey in this survey. In fact, The difference also highlights the negative impact on the quality of life and outcomes of patients whose diagnosis is delayed, as opposed to the professional frustration of a HCP unable to reach a conclusive diagnosis for their patient.…”

Section: Qualitative Analysismentioning

confidence: 99%

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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%

Section: Discussionmentioning

confidence: 99%

Section: Qualitative Analysismentioning

confidence: 99%

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

et al. 2019

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“…Efforts have been made by the European Hematology Association Scientific Working Group and the American Society of Hematology to develop a conceptual framework for Patient Reported Outcome Measures (PROMs) integration in clinical haematology care [1,2]. The framework builds on the assumption that the patient-doctor relationship is crucial in providing holistic, patient-centred care and alleviating the symptom burden caused by the disease or treatment.…”

Section: Introductionmentioning

confidence: 99%

“…The framework builds on the assumption that the patient-doctor relationship is crucial in providing holistic, patient-centred care and alleviating the symptom burden caused by the disease or treatment. PROMs can help identify symptom burden and inform the decision-making process, leading to initiation of supportive care [1][2][3].…”

Section: Introductionmentioning

confidence: 99%

Haematologists’ experiences implementing patient reported outcome measures (PROMs) in an outpatient clinic: a qualitative study for applied practice

Hansen

Kjerholt

Christensen

et al. 2019

J Patient Rep Outcomes

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Background: The patient-doctor relationship is crucial to provide person-centred care, allowing the alleviation of symptom burden caused by disease or treatment. Implementing Patient Reported Outcome Measures (PROMs) is suggested to inform the decision-making process and lead to initiation of care. Yet there are knowledge gaps regarding how meaningful it is to incorporate PROMs in clinical settings. The aim of this study was to investigate haematologists' experiences when PROMs were implemented in an outpatient setting.Methods: Fourteen participant observations, 13 individual interviews and three in-depth interviews were conducted with haematologists, guided by the qualitative methodology Interpretive Description. Analysis was inspired by Habermas' critical theoretical framework.Results: The haematologists included were characterised by dichotomous experiences with PROMs, either resistant to or supporting their implementation. None were observed to elaborate on PROMs during consultations: instead, primary attention was spent discussing the hematological agenda dictated by the system. Conclusion:The use of PROMs for individualized care was linked with extensive uncertainties and PROMs were not requested by the haematologists. To improve individualized care, other approaches may be more suitable. If PROMs are to be incorporated into future clinical practice, they should be tested tothe specific patient group and involve relevant users.

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