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Patient information in stem cell transplantation from the perspective of health care professionals: A survey from the Nurses Group of the European Group for Blood and Marrow Transplantation

Bone Marrow Transplantation volume 47, pages 1131–1133 (2012)Cite this article

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Obtaining information is a fundamental right of recipients of haematopoietic stem cell transplantation (HSCT). Delivery of patient information can contribute to reducing patients’ worries, improve medication adherence, prevent treatment-related complications, enable patients to take a more active role in decision-making and enhance their self-management.1 Importantly, a recent study involving 3066 HSCT long-term survivors highlighted that lack of patient knowledge is a predictor for non-adherence to the recommended care after HSCT, which might lead to serious complications after treatment.2 Although health care professionals (HCPs) are obliged to inform and educate patients about their disease and treatment and what to expect during and after HSCT, there is little known about HCPs perceptions regarding the practice of information dissemination.

Table 1 Demographic characteristics of the sample
Full size table

In order to obtain knowledge on HCPs perceptions regarding the type and amount of information patients are given during the first year of HSCT, we invited registered nurses (RNs) and physicians attending the opening and joint session of the Annual Meeting of the European Group for Blood and Marrow Transplantation (EBMT) in Vienna 2010, to participate in a survey. Because no measure regarding patient information addressing HCPs is available, we administered the EORTC QLQ-INFO25, a 25 item cancer-specific questionnaire.3 HCPs were asked to respond to the questions as a typical patient of their centre being one year after HSCT would have done. The EORTC QLQ-INFO25 includes four subscales: information about disease, medical tests, treatment, other services and eight single items (Table 2). Except for four items, which have dichotomous response alternatives (yes/no), the response format of the questionnaire is a four-point Likert scale (1=not at all, 2=a little, 3=quite a bit, 4=very much). Item scores were linearly transformed to 0–100 scales. A higher score indicates a higher level of information received.

Table 2 Comparison of registered nurses (RNs) and physicians’ estimation of given information to patients during the first year of HSCT
Full size table

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Acknowledgements

This survey was supported by EBMT. We thank Kris Denhaerynk for statistical support.

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Authors and Affiliations

  1. Institute of Nursing Science, University of Basel, Basel, Switzerland

    M Kirsch

  2. Department of Haematology, University Hospital Basel, Basel, Switzerland

    M Kirsch

  3. Department of Haematology & Stem Cell Transplantation, Jules Bordet Institute, Brussels, Belgium

    P Crombez

  4. Department of Pediatric Haematology and Oncology, Gaslini Children Hospital, Genoa, Italy

    S Calza

  5. Department of Haematology, VU University Medical Center, Amsterdam, the Netherlands

    C Eeltink

  6. Red Cross University College, Stockholm, Sweden

    E Johansson

  7. Department of Medicine, Karolinska Institutet, Stockholm, Sweden

    E Johansson

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  1. M Kirsch
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Correspondence to E Johansson.

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Kirsch, M., Crombez, P., Calza, S. et al. Patient information in stem cell transplantation from the perspective of health care professionals: A survey from the Nurses Group of the European Group for Blood and Marrow Transplantation. Bone Marrow Transplant 47, 1131–1133 (2012). https://doi.org/10.1038/bmt.2011.223

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