Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study
Little is known about patient perspectives regarding consent for obtaining extra research-specific bone marrow (BM) samples during the diagnostic procedure for acute leukemia (AL). This study aimed to better understand patient experiences with consenting to provide these samples and identify potenti...
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| Format: | Article |
| Language: | English |
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MDPI AG
2025-03-01
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| Series: | Current Oncology |
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| Online Access: | https://www.mdpi.com/1718-7729/32/3/179 |
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| author | Stuart G. Nicholls Erika Camilleri Taryn Chesser Gary Davis Katya Godard Grace Fox Madeleine Jane Gordon Krystina B. Lewis Jocelyn Lepage Oksana Motalo Wendy Nuttall Craig Peleshok Caryn Y. Ito Pierre J. A. Villeneuve Mitchell Sabloff |
| author_facet | Stuart G. Nicholls Erika Camilleri Taryn Chesser Gary Davis Katya Godard Grace Fox Madeleine Jane Gordon Krystina B. Lewis Jocelyn Lepage Oksana Motalo Wendy Nuttall Craig Peleshok Caryn Y. Ito Pierre J. A. Villeneuve Mitchell Sabloff |
| author_sort | Stuart G. Nicholls |
| collection | DOAJ |
| description | Little is known about patient perspectives regarding consent for obtaining extra research-specific bone marrow (BM) samples during the diagnostic procedure for acute leukemia (AL). This study aimed to better understand patient experiences with consenting to provide these samples and identify potential areas for practice improvement. Semi-structured interviews were conducted with patients treated for AL, 4–6 years prior to the interviews, and healthcare professionals involved with obtaining patient consent and sample collection. A total of 17 patients (14 agreed to provide a sample and 3 did not have a sample in the biobank) and 5 healthcare professionals were interviewed, achieving data saturation. Patients supported increasing public knowledge about research and noted the importance of friends and family in providing emotional support and retaining information. Despite time pressure and anxiety, the decision to donate a research sample did not require much deliberation. Proximal factors informing decisions included impact on patient health and family and anticipated, procedure-associated pain; distal factors included altruism and trust in healthcare professionals. Key information included expected pain and management, the purpose of research samples, and sample security and privacy. Our findings suggest that BM research sample collection may be facilitated through optimizing the environment where information is provided and the type of information provided, including pain management options and the value of the samples for current and future research. |
| format | Article |
| id | doaj-art-95e3b57716f642ee839314f0d8ebf309 |
| institution | Kabale University |
| issn | 1198-0052 1718-7729 |
| language | English |
| publishDate | 2025-03-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Current Oncology |
| spelling | doaj-art-95e3b57716f642ee839314f0d8ebf3092025-08-20T03:43:30ZengMDPI AGCurrent Oncology1198-00521718-77292025-03-0132317910.3390/curroncol32030179Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative StudyStuart G. Nicholls0Erika Camilleri1Taryn Chesser2Gary Davis3Katya Godard4Grace Fox5Madeleine Jane Gordon6Krystina B. Lewis7Jocelyn Lepage8Oksana Motalo9Wendy Nuttall10Craig Peleshok11Caryn Y. Ito12Pierre J. A. Villeneuve13Mitchell Sabloff14Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, ON K1H 8L6, CanadaMedical School, University of Ottawa, Ottawa, ON K1H 8M5, CanadaThe Ottawa Hospital, Ottawa, ON K1H 8L6, CanadaIndependent Researcher, Ottawa, ON, CanadaOttawa Hospital Research Institute, Ottawa, ON K1H 8L6, CanadaMethodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, ON K1H 8L6, CanadaMedical School, University of Ottawa, Ottawa, ON K1H 8M5, CanadaSchool of Nursing, Faculty of Health Sciences, University of Ottawa, Ottawa, ON K1N 6N5, CanadaDepartment of Medicine, University of Ottawa, Ottawa, ON K1H 8L6, CanadaDepartment of Medicine, University of Ottawa, Ottawa, ON K1H 8L6, CanadaIndependent Researcher, Ottawa, ON, CanadaIndependent Researcher, Ottawa, ON, CanadaThe Sprott Centre for Stem Cell Research, Ottawa Hospital Research Institute, Ottawa, ON K1H 8L6, CanadaDivision of Hematology, Department of Medicine, Ottawa Hospital Research Institute, Ottawa, ON K1H 8L6, CanadaDivision of Hematology, Department of Medicine, Ottawa Hospital Research Institute, Ottawa, ON K1H 8L6, CanadaLittle is known about patient perspectives regarding consent for obtaining extra research-specific bone marrow (BM) samples during the diagnostic procedure for acute leukemia (AL). This study aimed to better understand patient experiences with consenting to provide these samples and identify potential areas for practice improvement. Semi-structured interviews were conducted with patients treated for AL, 4–6 years prior to the interviews, and healthcare professionals involved with obtaining patient consent and sample collection. A total of 17 patients (14 agreed to provide a sample and 3 did not have a sample in the biobank) and 5 healthcare professionals were interviewed, achieving data saturation. Patients supported increasing public knowledge about research and noted the importance of friends and family in providing emotional support and retaining information. Despite time pressure and anxiety, the decision to donate a research sample did not require much deliberation. Proximal factors informing decisions included impact on patient health and family and anticipated, procedure-associated pain; distal factors included altruism and trust in healthcare professionals. Key information included expected pain and management, the purpose of research samples, and sample security and privacy. Our findings suggest that BM research sample collection may be facilitated through optimizing the environment where information is provided and the type of information provided, including pain management options and the value of the samples for current and future research.https://www.mdpi.com/1718-7729/32/3/179bone marrowacute leukemiabiobankqualitativepatient experience |
| spellingShingle | Stuart G. Nicholls Erika Camilleri Taryn Chesser Gary Davis Katya Godard Grace Fox Madeleine Jane Gordon Krystina B. Lewis Jocelyn Lepage Oksana Motalo Wendy Nuttall Craig Peleshok Caryn Y. Ito Pierre J. A. Villeneuve Mitchell Sabloff Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study Current Oncology bone marrow acute leukemia biobank qualitative patient experience |
| title | Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study |
| title_full | Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study |
| title_fullStr | Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study |
| title_full_unstemmed | Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study |
| title_short | Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study |
| title_sort | patient and healthcare professional reflections on consenting for extra bone marrow samples to a biobank for research a qualitative study |
| topic | bone marrow acute leukemia biobank qualitative patient experience |
| url | https://www.mdpi.com/1718-7729/32/3/179 |
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