{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T17:36:19Z","timestamp":1793295379895,"version":"4.5.0"},"reference-count":64,"publisher":"BMJ","issue":"3","license":[{"start":{"date-parts":[[2022,3,29]],"date-time":"2022-03-29T00:00:00Z","timestamp":1648512000000},"content-version":"unspecified","delay-in-days":28,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100015570","name":"Blood Cancer UK","doi-asserted-by":"publisher","award":["15037"],"award-info":[{"award-number":["15037"]}],"id":[{"id":"10.13039\/501100015570","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100007602","name":"NIHR Programme Grant for Applied Research","doi-asserted-by":"crossref","award":["RP-PG-0613-2002"],"award-info":[{"award-number":["RP-PG-0613-2002"]}],"id":[{"id":"10.13039\/501100007602","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000289","name":"Cancer Research UK","doi-asserted-by":"publisher","award":["29685"],"award-info":[{"award-number":["29685"]}],"id":[{"id":"10.13039\/501100000289","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2022,2,25]]},"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>Haematological malignancies are the fifth most common cancer in the UK, with chronic subtypes comprising around a third of all new diagnoses. These complex diseases have some similarities with other cancers, but often require different management. Surgical resection is not possible, and while some are curable with intensive chemotherapy, most indolent subtypes are managed with non-aggressive intermittent or continuous treatment, often over many years. Little is known about the views of patients with chronic haematological cancers regarding treatment decision making (TDM), a deficit our study aimed to address.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting and design<\/jats:title>\n                    <jats:p>\n                      Set within the Haematological Malignancy Research Network (HMRN:\n                      <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"www.hmrn.org\">www.hmrn.org<\/jats:ext-link>\n                      ), an ongoing population-based cohort that provides infrastructure to support evidence-based research, HMRN data were augmented by qualitative information from in-depth interviews. Data were analysed for thematic content, combining inductive and deductive approaches. Interpretation involved seeking meaning, salience and connections within data.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Thirty-five patients with four chronic subtypes: chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma. Ten relatives were present and contributed to varying extents.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five themes were discerned: (1) Preference for clinician recommendations; (2) Factors implicated in patient involvement in TDM; (3) Perceptions of proactive\/non-proactive approaches to TDM; (4) Experiences of TDM at various points in the disease trajectory; (5) Support from others. Our principal finding relates to a strong preference among interviewees for treatment recommendations from haematologists, based on trust in their expertise and perceptions of empathetic patient\u2013clinician relationships.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Interviewees wanted to be involved in TDM to varying extents, contingent on complex, inter-related factors, that are dynamic and subject to change according to differing clinical and personal contexts. Patients may benefit from clinicians assessing their shifting preferences for involvement on multiple occasions. Strong preferences for acceptance of recommendations was associated with cancer complexity, trust in clinician expertise and positive perceptions of patient\u2013clinician relationships.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2021-050816","type":"journal-article","created":{"date-parts":[[2022,3,29]],"date-time":"2022-03-29T12:06:36Z","timestamp":1648555596000},"page":"e050816","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":22,"title":["Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers"],"prefix":"10.1136","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5388-2455","authenticated-orcid":false,"given":"Dorothy","family":"McCaughan","sequence":"first","affiliation":[{"name":"Health Sciences, University of York, York, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7603-3704","authenticated-orcid":false,"given":"Eve","family":"Roman","sequence":"additional","affiliation":[{"name":"Health Sciences, University of York, York, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1111-966X","authenticated-orcid":false,"given":"Alexandra","family":"Smith","sequence":"additional","affiliation":[{"name":"Health Sciences, University of York, York, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Russell","family":"Patmore","sequence":"additional","affiliation":[{"name":"Queens Centre for Oncology, Castle Hill Hospital, Cottingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7521-7402","authenticated-orcid":false,"given":"Debra","family":"Howell","sequence":"additional","affiliation":[{"name":"Health Sciences, University of York, York, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2022,3,29]]},"reference":[{"key":"2025121220321649000_12.3.e050816.1","unstructured":"Office for National Statistics . Cancer registration statistics, England, 2017. Available: https:\/\/www.ons.gov.uk\/peoplepopulationandcommunity\/healthandsocialcare\/conditionsanddiseases\/bulletins\/cancerregistrationstatisticsengland\/2017 [Accessed 15 Jan 2021]."},{"key":"2025121220321649000_12.3.e050816.2","unstructured":"Public health England national statistics cancer registration statistics, England: final release, 2018. Gov.UK, 2020. Available: https:\/\/www.gov.uk\/government\/publications\/cancer-registration-statistics-england-2018-final-release\/cancer-registration-statistics-england-final-release-2018 [Accessed 15 Jan 2021]."},{"key":"2025121220321649000_12.3.e050816.3","unstructured":"Blood Cancer UK , 2018. Available: https:\/\/bloodcancer.org.uk\/news\/latest-statistics [Accessed 15 Jan 2021]."},{"key":"2025121220321649000_12.3.e050816.4","unstructured":"National Institute for clinical Excellence (NICE) interactive Flowcharts, 2020. Available: https:\/\/pathways.nice.org.uk\/pathways\/ [Accessed 15 Jan 2021]."},{"key":"2025121220321649000_12.3.e050816.5","unstructured":"British Society for Haematology . Guidelines, 2020. Available: https:\/\/b-s-h.org.uk\/guidelines\/ [Accessed 15 Jan 2021]."},{"key":"2025121220321649000_12.3.e050816.6","doi-asserted-by":"publisher","DOI":"10.1038\/bjc.2011.450"},{"key":"2025121220321649000_12.3.e050816.7","doi-asserted-by":"publisher","DOI":"10.1093\/ije\/dyy044"},{"key":"2025121220321649000_12.3.e050816.8","doi-asserted-by":"publisher","DOI":"10.1186\/s13045-017-0453-8"},{"key":"2025121220321649000_12.3.e050816.9","first-page":"93","article-title":"Chimeric antigen-receptor T-cell therapy for hematological malignancies and solid tumors: clinical data to date, current limitations and perspectives","volume":"65","author":"Gauthier","year":"2017","journal-title":"Curr Res Transl Med"},{"key":"2025121220321649000_12.3.e050816.10","doi-asserted-by":"crossref","unstructured":"Institute of Medicine (US) Committee on Quality of Health Care in America . Crossing the quality chasm: a new health system for the 21st century. Washington (dC): Natl ACAD press (US), 2001. Available: https:\/\/doi.org\/10.17226\/10027","DOI":"10.17226\/10027"},{"key":"2025121220321649000_12.3.e050816.11","unstructured":"Coulter A , Collins A . Making Shared Decision Making a Reality: No decision about me, without me. Report from The King\u2019s Fund. London: The King\u2019s Fund, 2011. https:\/\/www.kingsfund.org.uk\/sites\/default\/files\/Making-shared-decision-making-a-reality-paper-Angela-Coulter-Alf-Collins-July-2011_0.pdf"},{"key":"2025121220321649000_12.3.e050816.12","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1109283"},{"key":"2025121220321649000_12.3.e050816.13","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-012-2077-6"},{"key":"2025121220321649000_12.3.e050816.14","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.j4891"},{"key":"2025121220321649000_12.3.e050816.15","doi-asserted-by":"crossref","first-page":"1602","DOI":"10.1016\/j.pec.2019.04.028","article-title":"Review of the patient-centered communication landscape in multiple myeloma and other hematologic malignancies","volume":"102","author":"LeBlanc","year":"2019","journal-title":"Patient Educ Couns"},{"key":"2025121220321649000_12.3.e050816.16","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e6572"},{"key":"2025121220321649000_12.3.e050816.17","doi-asserted-by":"crossref","first-page":"1239","DOI":"10.1001\/jamainternmed.2017.1923","article-title":"Shared decision Making-The importance of diagnosing preferences","volume":"177","author":"Elwyn","year":"2017","journal-title":"JAMA Intern Med"},{"key":"2025121220321649000_12.3.e050816.18","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1002\/pon.4923","article-title":"Shared decision making in oncology: a model based on patients', health care professionals', and researchers' views","volume":"28","author":"Bomhof-Roordink","year":"2019","journal-title":"Psychooncology"},{"key":"2025121220321649000_12.3.e050816.19","doi-asserted-by":"crossref","first-page":"297","DOI":"10.1002\/pon.1891","article-title":"Information giving and receiving in hematological malignancy consultations","volume":"21","author":"Alexander","year":"2012","journal-title":"Psychooncology"},{"key":"2025121220321649000_12.3.e050816.20","first-page":"34","article-title":"Patient, physician and contextual factors are influential in the treatment decision making of older adults newly diagnosed with symptomatic myeloma","volume":"2","author":"Tariman","year":"2014","journal-title":"Cancer Treat Commun"},{"key":"2025121220321649000_12.3.e050816.21","doi-asserted-by":"crossref","first-page":"85","DOI":"10.1002\/hon.2138","article-title":"Perceived need for information among patients with a haematological malignancy: associations with information satisfaction and treatment decision-making preferences","volume":"33","author":"Rood","year":"2015","journal-title":"Hematol Oncol"},{"key":"2025121220321649000_12.3.e050816.22","doi-asserted-by":"crossref","first-page":"2040","DOI":"10.1002\/pon.4414","article-title":"Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not \"one-size-fits-all\"","volume":"26","author":"Rood","year":"2017","journal-title":"Psychooncology"},{"key":"2025121220321649000_12.3.e050816.23","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"2025121220321649000_12.3.e050816.24","doi-asserted-by":"publisher","DOI":"10.1002\/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G"},{"key":"2025121220321649000_12.3.e050816.25","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-9-52"},{"key":"2025121220321649000_12.3.e050816.26","first-page":"1772","article-title":"Sampling in qualitative research: insights from an overview of the methods literature","volume":"20","author":"Gentles","year":"2015","journal-title":"The Qualitative Report"},{"key":"2025121220321649000_12.3.e050816.27","doi-asserted-by":"crossref","first-page":"1753-1760","DOI":"10.1177\/1049732315617444","article-title":"Sample size in qualitative interview studies: guided by information power","volume":"26","author":"Malterud","year":"2016","journal-title":"Qual Health Res"},{"key":"2025121220321649000_12.3.e050816.28","doi-asserted-by":"publisher","DOI":"10.1007\/s11135-017-0574-8"},{"key":"2025121220321649000_12.3.e050816.29","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1177\/0844562119898554","article-title":"The Great Saturation Debate: What the \"S Word\" Means and Doesn't Mean in Qualitative Research Reporting","volume":"52","author":"Thorne","year":"2020","journal-title":"Can J Nurs Res"},{"key":"2025121220321649000_12.3.e050816.30","doi-asserted-by":"publisher","DOI":"10.1177\/1049732308314930"},{"key":"2025121220321649000_12.3.e050816.31","first-page":"233339361774228","article-title":"Employing a qualitative description approach in health care research","volume":"4","author":"Bradshaw","year":"2017","journal-title":"Glob Qual Nurs Res"},{"key":"2025121220321649000_12.3.e050816.32","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1177\/160940690300200201","article-title":"\u2018Clear as Mud\u2019: Toward Greater Clarity in Generic Qualitative Research","volume":"2","author":"Caelli","year":"2003","journal-title":"Int J Qual Methods"},{"key":"2025121220321649000_12.3.e050816.33","doi-asserted-by":"crossref","unstructured":"Pope C , Mays N , eds. Qualitative Research in Health Care. 3. Oxford: BMJ Blackwell Publishing, 2006.","DOI":"10.1002\/9780470750841"},{"key":"2025121220321649000_12.3.e050816.34","doi-asserted-by":"publisher","DOI":"10.1002\/nur.20362"},{"key":"2025121220321649000_12.3.e050816.35","doi-asserted-by":"crossref","unstructured":"Green J , Thorogood N . Qualitative methods for health research: introducing qualitative methods series. 4. London: Sage, 2018.","DOI":"10.4135\/9781036234386"},{"key":"2025121220321649000_12.3.e050816.36","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.320.7226.8"},{"key":"2025121220321649000_12.3.e050816.37","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.322.7294.1115"},{"key":"2025121220321649000_12.3.e050816.38","doi-asserted-by":"crossref","DOI":"10.1186\/s12913-019-4649-1","article-title":"Development of a program theory for shared decision-making: a realist synthesis","volume":"20","author":"Waldron","year":"2020","journal-title":"BMC Health Serv Res"},{"key":"2025121220321649000_12.3.e050816.39","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2006.05.002"},{"key":"2025121220321649000_12.3.e050816.40","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2013.10.031"},{"key":"2025121220321649000_12.3.e050816.41","doi-asserted-by":"crossref","first-page":"2195","DOI":"10.1016\/j.pec.2018.08.007","article-title":"Keeping the patient in the center: common challenges in the practice of shared decision making","volume":"101","author":"Fisher","year":"2018","journal-title":"Patient Educ Couns"},{"key":"2025121220321649000_12.3.e050816.42","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2015.05.004"},{"key":"2025121220321649000_12.3.e050816.43","doi-asserted-by":"crossref","first-page":"2465","DOI":"10.1111\/hex.12216","article-title":"Physicians' perceptions of shared decision-making behaviours: a qualitative study demonstrating the continued chasm between aspirations and clinical practice","volume":"18","author":"Zeuner","year":"2015","journal-title":"Health Expect"},{"key":"2025121220321649000_12.3.e050816.44","doi-asserted-by":"crossref","first-page":"175","DOI":"10.1093\/tbm\/ibx034","article-title":"Improving shared decision-making in chronic lymphocytic leukemia through multidisciplinary education","volume":"8","author":"Rocque","year":"2018","journal-title":"Transl Behav Med"},{"key":"2025121220321649000_12.3.e050816.45","doi-asserted-by":"crossref","first-page":"14","DOI":"10.1016\/j.pec.2016.07.010","article-title":"\u2018That\u2019s the doctor\u2019s job\u2019: Overcoming patient reluctance to be involved in medical decision making","volume":"100","author":"Blumenthal-Barby","year":"2017","journal-title":"Patient Educ Couns"},{"key":"2025121220321649000_12.3.e050816.46","unstructured":"National Institute for Clinical Excellence (NICE) . Haematological cancers: improving outcomes NICE guideline [NG47]. Available: https:\/\/www.nice.org.uk\/guidance\/ng47\/evidence\/improving-outcomes-in-haematological-cancers-the-manual-pdf-2487893581 [Accessed 15 Jan 2021]."},{"key":"2025121220321649000_12.3.e050816.47","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2016-001289"},{"key":"2025121220321649000_12.3.e050816.48","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2017-016360"},{"key":"2025121220321649000_12.3.e050816.49","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1177\/1049732320962759","article-title":"The balance of patient involvement: patients' and health professionals' perspectives on decision-making in the treatment of advanced prostate cancer","volume":"31","author":"L\u00f8we","year":"2021","journal-title":"Qual Health Res"},{"key":"2025121220321649000_12.3.e050816.50","doi-asserted-by":"crossref","first-page":"S15","DOI":"10.1038\/sj.bjc.6601080","article-title":"Patient information and shared decision-making in cancer care","volume":"89 Suppl 1","author":"Coulter","year":"2003","journal-title":"Br J Cancer"},{"key":"2025121220321649000_12.3.e050816.51","unstructured":"Legare F , Stacey D , TEAM IP . IP-SDM model, 2010. Available: https:\/\/decisionaid.ohri.ca\/docs\/develop\/IP-SDM-Model.pdf [Accessed 15 Jan 2021]."},{"key":"2025121220321649000_12.3.e050816.52","article-title":"Understanding the information needs of people with haematological cancers. A meta-ethnography of quantitative and qualitative research","volume":"26","author":"Atherton","year":"2017","journal-title":"Eur J Cancer Care"},{"key":"2025121220321649000_12.3.e050816.53","doi-asserted-by":"crossref","first-page":"5492","DOI":"10.1182\/bloodadvances.2020003044","article-title":"Decisional involvement and information preferences of patients with hematologic malignancies","volume":"4","author":"Loh","year":"2020","journal-title":"Blood Adv"},{"key":"2025121220321649000_12.3.e050816.54","doi-asserted-by":"crossref","first-page":"1719","DOI":"10.1002\/pon.4714","article-title":"Perspectives of patients with haematological cancer on how clinicians meet their information needs: \u201cManaging\u201d information versus \u201cgiving\u201d it","volume":"27","author":"Atherton","year":"2018","journal-title":"Psychooncology"},{"key":"2025121220321649000_12.3.e050816.55","doi-asserted-by":"crossref","first-page":"573","DOI":"10.1016\/j.pec.2013.08.023","article-title":"Physician communication styles in initial consultations for hematological cancer","volume":"93","author":"Chhabra","year":"2013","journal-title":"Patient Educ Couns"},{"key":"2025121220321649000_12.3.e050816.56","doi-asserted-by":"crossref","first-page":"2063","DOI":"10.1002\/pon.4309","article-title":"Patient experiences of acute myeloid leukemia: a qualitative study about diagnosis, illness understanding, and treatment decision-making","volume":"26","author":"LeBlanc","year":"2017","journal-title":"Psychooncology"},{"key":"2025121220321649000_12.3.e050816.57","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2012.11.007"},{"key":"2025121220321649000_12.3.e050816.58","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-010-0958-y"},{"key":"2025121220321649000_12.3.e050816.59","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1016\/j.ejon.2018.05.002","article-title":"Myeloma patients' experiences of haematopoietic stem cell transplant: a qualitative thematic synthesis","volume":"35","author":"Walpole","year":"2018","journal-title":"Eur J Oncol Nurs"},{"key":"2025121220321649000_12.3.e050816.60","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1016\/j.bbmt.2019.09.037","article-title":"Patient-Reported neuropsychiatric outcomes of long-term survivors after chimeric antigen receptor T cell therapy","volume":"26","author":"Ruark","year":"2020","journal-title":"Biol Blood Marrow Transplant"},{"key":"2025121220321649000_12.3.e050816.61","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-014-2123-5"},{"key":"2025121220321649000_12.3.e050816.62","doi-asserted-by":"crossref","first-page":"423","DOI":"10.1111\/ejh.12941","article-title":"Distress and unmet needs during treatment and quality of life in early cancer survivorship: a longitudinal study of haematological cancer patients","volume":"99","author":"Oberoi","year":"2017","journal-title":"Eur J Haematol"},{"key":"2025121220321649000_12.3.e050816.63","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2011.05.014"},{"key":"2025121220321649000_12.3.e050816.64","first-page":"1","article-title":"The changing face of qualitative inquiry. invited IIQM conference Keynote address 2019","volume":"19","author":"Morse","year":"2020","journal-title":"J Qual Methods"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2021-050816","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,13]],"date-time":"2025-12-13T04:32:28Z","timestamp":1765600348000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2021-050816"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,3]]},"references-count":64,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2022,3,29]]},"published-print":{"date-parts":[[2022,3]]}},"alternative-id":["10.1136\/bmjopen-2021-050816"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2021-050816","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,3]]}}}