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Because remitting–relapsing pathways are unpredictable, they can generate anxiety and distress, and patients’ information needs may differ and shift over time. This qualitative study investigated patients’ information preferences in a UK cohort, using in-depth interviews and thematic content analysis, to inform patient-facing resources and support effective shared decision-making.",{"@graph":69,"@context":122},[70,84,105],{"@type":71,"itemListElement":72},"BreadcrumbList",[73,77,79,82],{"item":74,"name":75,"@type":76,"position":8},"https://docshare.wps.com","Home","ListItem",{"item":78,"name":9,"@type":76,"position":14},"https://docshare.wps.com/document/",{"item":80,"name":40,"@type":76,"position":81},"https://docshare.wps.com/document/research-report/",3,{"item":83,"name":65,"@type":76,"position":19},"https://docshare.wps.com/document/information-preferences-of-patients-with-chronic-blood-cancer-a-qualitative-investigation-research-article/332345/",{"url":83,"name":65,"@type":85,"image":86,"author":91,"headline":65,"publisher":94,"fileFormat":97,"inLanguage":63,"description":67,"dateModified":98,"datePublished":99,"encodingFormat":97,"isAccessibleForFree":100,"interactionStatistic":101},"DigitalDocument",{"url":87,"@type":88,"width":89,"height":90},"https://docshare.wps.com/thumbnails/information-preferences-of-patients-with-chronic-blood-cancer-a-qualitative-investigation-research-article/332345.png","ImageObject",300,407,{"name":92,"@type":93},"Ezra","Person",{"url":74,"name":95,"@type":96},"DocShare","Organization","application/pdf","2026-11-05","2026-09-21",true,{"@type":102,"interactionType":103,"userInteractionCount":29},"InteractionCounter",{"@type":104},"ViewAction",{"@type":106,"mainEntity":107},"FAQPage",[108,114,118],{"name":109,"@type":110,"acceptedAnswer":111},"What is the clinical context of “Watch & Wait” in chronic blood cancers?","Question",{"text":112,"@type":113},"Patients are monitored at regular intervals and treatment starts only when progression occurs, which may happen never or multiple times over months or years.","Answer",{"name":115,"@type":110,"acceptedAnswer":116},"How was information preference explored in this study?",{"text":117,"@type":113},"The study used a qualitative design with purposive sampling and in-depth interviews, followed by qualitative description and thematic content analysis of the interview transcripts.",{"name":119,"@type":110,"acceptedAnswer":120},"What did the main findings suggest about patients’ information preferences?",{"text":121,"@type":113},"Patients showed varied and dynamic information preferences, with needs differing by person and changing over time, including differences in content, depth, presentation, sources, prognosis concerns, and knowledge preferences.","https://schema.org",{"og:url":83,"og:type":124,"og:title":65,"og:site_name":95,"og:description":67},"article",{"robots":126,"canonical":83},"index,follow",{"doc_id":128,"site_id":62},332345,1790463304,{"code":4,"msg":5,"data":131},{"doc_id":128,"user_id":132,"nickname":92,"user_avatar":133,"doc_module":4,"category_id":39,"category_name":40,"doc_title":65,"doc_description":67,"doc_content":134,"file_id":135,"file_url":136,"file_type":137,"file_size":138,"view_count":29,"is_deleted":4,"is_public":8,"is_downloadable":8,"audit_status":8,"page_count":139,"language":140,"language_code":63,"site_id":62,"html_lang":63,"table_of_contents":141,"faqs":142,"seo_title":143,"seo_description":67,"update_tm":144,"read_time":145,"preview_page_count":4},1099514068035,"https://ap-avatar.wpscdn.com/davatar_276721f389ce27ea32af1340a28f341c","PLOS ONE  \nOPEN ACCESS  \nCitation: Howell DA, McCaughan D, Smith A, Patmore R, Roman E (2024) Information preferences of patients with chronic blood cancer:  \nA qualitative investigation. PLoS ONE 19(8): e0293772 . [https://doi.org/10.1371/journal](https://doi.org/10.1371/journal). pone.0293772  \nEditor: Ramona Bongelli, University of Macerata: Universita degli Studi di Macerata, ITALY  \nReceived: October 26, 2023  \nAccepted: July 13, 2024  \nPublished: August 20, 2024  \nCopyright: © 2024 Howell et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.  \nData Availability Statement: This is a qualitative study and the data is in the form of entire transcripts, in which patients describe their experiences in great detail. As a result, data cannot be shared publicly because this would risk participant identification. Furthermore, we did not seek consent from patients for their data to be shared, nor did we request ethical approval for this.  \nFunding: [ER, DH, AS: Cancer Research UK  \n(CRUK, 29685, [https://cancerresearchuk.org/](https://cancerresearchuk.org/)); National Institute for Health and Care Research  \nRESEARCH ARTICLE  \nInformation preferences of patients with chronic blood cancer: A qualitative investigation  \nDebra A. Howell1 *, Dorothy McCaughan1, Alexandra Smith1, Russell Patmore2, Eve Roman1  \n1 Department of Health Sciences, Epidemiology & Cancer Statistics Group, University of York, York, United Kingdom, 2 Queens Centre for Oncology and Haematology, Castle Hill Hospital, Cottingham, United Kingdom  \n* [debra.howell@york.ac.uk](debra.howell@york.ac.uk)  \nAbstract  \nBackground  \nHaematological malignancies (blood cancers) often follow chronic trajectories that can span many months or years. Management of these diseases typically involves periods of ‘Watch & Wait’, whereby patients are monitored by the hospital and only treated at progression, if or when this occurs, which might be never or on multiple occasions. Such remitting-relapsing pathways are unpredictable and can cause anxiety and distress. This study aimed to generate evidence about information preferences, with a view to underpinning future patient-facing resources; potentially mitigating psycho-social difficulties and promoting effective shared decision-making.  \nMethods  \nA qualitative study was conducted, set within a UK population-based cohort of patients with haematological malignancies. Sampling was purposive, based on age (initially around the median age of diagnosis) and disease subtype (chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma and myeloma); and in-depth interviews took place with 35 patients (10 with relatives) . Analysis drew on qualitative description and thematic content analysis and included critical reading and annotation of transcripts, identification of common and rare phenomena, generation of codes and coding of material, and theme development.  \nResults  \nPatients discussed their preferences and experiences at length and rich data were generated from diagnosis onwards, across diagnostic subtypes. The overarching theme identified was ‘Variations in preferences’ with needs seen to differ from person to person; as well as changing over time for individuals. Five sub-themes were identified: 1) To know or not to know? 2) Needs are dynamic; 3) The polarising issue of prognosis; 4) Preferred sources; and 5) Differences in content, depth and presentation.  \n(NIHR) Programme Grant for Applied Research (PGfAR RP-PG-0613-2002, [https://nihr.ac.uk/](https://nihr.ac.uk/));  \nBlood Cancer UK (BCUK, 15037, [https://](https://)[ ](https://)[bloodcancer.org.uk/](bloodcancer.org.uk/))] . The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.  \nCompeting interests: The au","cbCainBQhvvw9KdS","https://ap.wps.com/l/cbCainBQhvvw9KdS","pdf",590404,14,"English","# Abstract\n## Background\n## Methods\n## Results\n## Conclusions\n# Background\n## Chronic trajectories and Watch & Wait\n## Clinical decision-making and outcomes\n## Rationale for studying information needs","[{\"question\":\"What is the clinical context of “Watch \\u0026 Wait” in chronic blood cancers?\",\"answer\":\"Patients are monitored at regular intervals and treatment starts only when progression occurs, which may happen never or multiple times over months or years.\"},{\"question\":\"How was information preference explored in this study?\",\"answer\":\"The study used a qualitative design with purposive sampling and in-depth interviews, followed by qualitative description and thematic content analysis of the interview transcripts.\"},{\"question\":\"What did the main findings suggest about patients’ information preferences?\",\"answer\":\"Patients showed varied and dynamic information preferences, with needs differing by person and changing over time, including differences in content, depth, presentation, sources, prognosis concerns, and knowledge preferences.\"}]","Information preferences of patients with chronic blood cancer - A qualitative investigation - Research article | PDF",1789997791,35]