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  • 1
    Online Resource
    Online Resource
    Decision making for hematopoietic stem cell transplantation in pediatric, adolescent, and young adult patients with a hemoglobinopathy—Shared or not?
    Wiley ; 2021
    In:  Pediatric Blood & Cancer Vol. 68, No. 9 ( 2021-09)
    Details
    In: Pediatric Blood & Cancer, Wiley, Vol. 68, No. 9 ( 2021-09)
    Abstract: Hematopoietic stem cell transplantation (HSCT) offers an established curative option for sickle cell disease (SCD) and thalassemia patients but is associated with significant risks. Decision making is a complex process and shared decision making (SDM) could be a fitting approach in case of such preference‐sensitive decisions. This study investigated what level of SDM is used in conversations with hemoglobinopathy patients and/or their caregivers considering HSCT as a curative treatment option. Methods Longitudinal, descriptive study using the Observing‐Patient‐Involvement‐in‐Decision‐Making scale (OPTION 5 ) scale to determine the level of SDM in conversations with 26 hemoglobinopathy patients and/or their caregivers. Results The total mean OPTION 5 score was 43%, which is a moderate SDM approach. There was no difference between conversations with thalassemia patients and SCD patients. Conversations needing an interpreter scored worse than nontranslated conversations. The best scoring OPTION 5 item was item 3: “informing about the various treatment options” (mean score 2.3 on scale 0–4). For OPTION 5 item 4: “eliciting patients’ preferences” a more skilled effort was measured for SCD patients compared to thalassemia patients. Conclusions The mean OPTION 5 score of “moderate” was achieved mainly by giving information on available options, which is primarily a one‐way communication. The SDM process can be improved by actively inviting patients to deliberate about options and including their elicited preferences in decision making.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    URL: Article
    DOI: 10.1002/pbc.v68.9
    DOI: 10.1002/pbc.29099
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2130978-4
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  • 2
    Online Resource
    Online Resource
    Table_2.docx
    Frontiers Media SA ; 2021
    In:  Frontiers in Pediatrics Vol. 9 ( 2021-8-18)
    Details
    In: Frontiers in Pediatrics, Frontiers Media SA, Vol. 9 ( 2021-8-18)
    Abstract: Hematopoietic stem cell transplantation decision-making for hemoglobinopathy patients is a complex process, and it remains difficult for health care professionals to decide whether and when a hematopoietic stem cell transplantation should be offered. Gaining insight into health care professionals' considerations is required to understand and optimize this decision-making process. A qualitative interview study using semi-structured interviews with eighteen health care professionals. Data were thematically analyzed. Two main themes emerged from the data: (1) Experiencing the influence of a frame of reference and (2) Feeling responsible for a guided decision-making . The frame of reference, meaning the health care professionals' knowledge and experiences regarding hematopoietic stem cell transplantation, influenced the guided decision-making process. Subsequently, three subthemes evolved from the second theme: (a) weighing up disease severity against possible complications, (b) making an effort to inform, and (c) supporting the best fitting decision for the individual patient. The health care professionals' frame of reference determined the hematopoietic stem cell transplantation decision-making process. This demands reflection on the health care professionals' own frame of reference and its influence on decision-making. Furthermore, reflection on the frame of reference is needed by exchange of knowledge and experiences between referring and referred-to healthcare professionals in an open and two-way direction. The transplantation teams have a responsibility of keeping the frame of reference of their referring colleagues up to date and referring health care professionals should share their feelings regarding hematopoietic stem cell transplantation. To guide patients, a shared decision-making approach is supportive, in which eliciting the patients' preferences is highly important. Health care professionals can refine the decision-making process by guiding patients in eliciting their preferences and including these in the decision.
    Type of Medium: Online Resource
    ISSN: 2296-2360
    URL: Article
    URL: Article
    URL: Article
    DOI: 10.3389/fped.2021.690309
    DOI: 10.3389/fped.2021.690309.s001
    DOI: 10.3389/fped.2021.690309.s002
    Language: Unknown
    Publisher: Frontiers Media SA
    Publication Date: 2021
    detail.hit.zdb_id: 2711999-3
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  • 3
    Online Resource
    Online Resource
    Decision making on HSCT in patients with hemoglobinopathies; an EBMT Pediatric Diseases Working Party and Inborn Errors Working Party scenario-based survey on physicians’ perspectives
    Springer Science and Business Media LLC ; 2023
    In:  Bone Marrow Transplantation Vol. 58, No. 5 ( 2023-05), p. 584-586
    Details
    In: Bone Marrow Transplantation, Springer Science and Business Media LLC, Vol. 58, No. 5 ( 2023-05), p. 584-586
    Type of Medium: Online Resource
    ISSN: 0268-3369 , 1476-5365
    URL: Article
    DOI: 10.1038/s41409-023-01926-4
    RVK:
    XA 10000
    RVK:
    XA 33180
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2004030-1
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  • 4
    Online Resource
    Online Resource
    Hoping for a normal life: Decision‐making on hematopoietic stem cell transplantation by patients with a hemoglobinopathy and their caregivers
    Wiley ; 2023
    In:  Pediatric Blood & Cancer
    Details
    In: Pediatric Blood & Cancer, Wiley
    Abstract: To provide insight into the perspectives of children and young adults with transfusion‐dependent thalassemia and sickle cell disease and their caregivers regarding the decision for hematopoietic stem cell transplantation (HSCT). Procedure A qualitative longitudinal multicenter study. Data collection consisted of 40 audio‐recorded conversations between physicians and families and 77 interviews with patients and/or caregivers related to 27 unique cases, collected at different time points throughout the decision‐making process. Results Conversations and interviews revealed “hoping for a normal life” as an overarching theme, consisting of four main topics: (i) “Building a frame of reference” refers to a process where patients or families try to obtain comprehensive information on HSCT and translate this to their situation to decide. (ii) “Balancing between loss and benefit” reports the process of considering the advantages and disadvantages of continuing with supportive care to treat their disease versus choosing HSCT. (iii) “Experiencing the impact of HSCT” describes the impactfull experience of the HSCT period by those who chose HSCT. (iv) “Balancing again” refers to reflecting on the decision made. Conclusions The hope for a normal life guided the decision‐making process, described as a constant balance between the impact of the disease and HSCT. A structured approach to explore patients’ and caregivers’ perspectives on HSCT decision‐making is needed, where specifically discussing the impact of the disease and hope for a normal life need to be integrated in the process.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Article
    DOI: 10.1002/pbc.30808
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2130978-4
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