Understanding Patients' Experiences in Newly Diagnosed Adult B Cell Acute Lymphoblastic Leukemia: Qualitative Interviews to Develop a Patient-Centric Conceptual Model.

IF 3.2 Q2 ONCOLOGY
Oncology and Therapy Pub Date : 2025-06-01 Epub Date: 2025-04-13 DOI:10.1007/s40487-025-00336-4
Michael Chladek, Maria Virginia Meza, Jessie Wang, Maria Sae-Hau, Ana Buenfil, James Turnbull, Faraz Zaman, Nicolas Despiegel
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引用次数: 0

Abstract

Introduction: Treatment outcomes for older adults with B cell acute lymphoblastic leukemia (B cell ALL) are poor, partially because of poor tolerance to intense chemotherapy. Information on patient experience-an important consideration in drug development-is lacking. We investigated the signs, symptoms, and impacts of B cell ALL on older patients (or those with comorbidities that may reduce chemotherapy tolerance).

Methods: This observational study involved teleconference-based, qualitative, semi-structured interviews with patients newly diagnosed with B cell ALL, aged ≥ 55 years, or 30-54 years with ≥ 1 comorbidity. Participants described their B cell ALL experience, including signs, symptoms, and impacts, and how bothersome/disturbing these were from 0 (not at all) to 10 (greatly) at three timepoints (around diagnosis, at worst, and at interview). Salient signs/symptoms were those reported by ≥ 40%, with average disturbance ratings of ≥ 4. A conceptual model of key disease- and treatment-related signs, symptoms, and impacts was developed.

Results: Interviews with 20 participants (mean age 57.9 years; 80% diagnosed within 18 months) revealed 63 signs/symptoms and 37 impacts. All reported fatigue-related symptoms, and most reported gastrointestinal (n = 18, 90%), central/peripheral nervous system (n = 16, 80%), and pain-, respiratory-, blood-, and mouth-related (all n = 14, 70%) symptoms. Eight signs/symptoms were salient around diagnosis (fatigue, tiredness, weakness, exhaustion, shortness of breath, sweating, general pain, and diarrhea) and 16 were salient "at worst"; four remained salient at interview (all fatigue-related). All participants reported emotional impacts, and most reported physical and social impacts (both n = 16, 80%). The most frequent impact was inability to do previous hobbies/activities (n = 15, 75%), followed by decreased ability for activities of daily living and worry/fear/nervousness (both n = 12, 60%).

Conclusion: This study provides insight into patients' experience with newly diagnosed B cell ALL among older patients or those with clinically significant comorbidities. This enhances understanding of what matters most to patients and informs future treatment development and clinical care.

了解新诊断成人B细胞急性淋巴母细胞白血病患者的经历:质性访谈以发展以患者为中心的概念模型。
老年B细胞急性淋巴细胞白血病(B细胞ALL)的治疗结果很差,部分原因是对高强度化疗的耐受性差。缺乏关于患者经验的信息——这是药物开发中的一个重要考虑因素。我们研究了B细胞ALL对老年患者(或伴有可能降低化疗耐受性的合并症患者)的体征、症状和影响。方法:这项观察性研究采用基于电话会议的、定性的、半结构化的访谈方式,对年龄≥55岁或30-54岁且合并症≥1例的新诊断B细胞ALL患者进行访谈。参与者描述了他们的B细胞ALL经历,包括体征、症状和影响,以及在三个时间点(诊断前后、最坏时和面谈时)从0(完全没有)到10(非常严重)的烦恼/烦恼程度。显著体征/症状报告率≥40%,平均干扰评分≥4。开发了一个关键疾病和治疗相关体征、症状和影响的概念模型。结果:访谈20例参与者(平均年龄57.9岁;(80%在18个月内确诊)显示63个体征/症状和37个影响。所有患者均报告了疲劳相关症状,大多数患者报告了胃肠道(n = 18, 90%)、中枢/周围神经系统(n = 16, 80%)以及疼痛、呼吸、血液和口腔相关症状(n = 14, 70%)。8个体征/症状在诊断前后显著(疲劳、疲倦、虚弱、疲惫、呼吸短促、出汗、全身疼痛和腹泻),16个“最坏”时显著;其中四个在面试中仍然很突出(都与疲劳有关)。所有参与者都报告了情绪影响,大多数报告了身体和社会影响(n = 16,80%)。最常见的影响是无法做以前的爱好/活动(n = 15,75%),其次是日常生活活动能力下降和担心/恐惧/紧张(n = 12,60%)。结论:本研究提供了新诊断B细胞ALL的老年患者或有临床显著合并症患者的经验。这加强了对患者最重要的理解,并为未来的治疗开发和临床护理提供信息。
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来源期刊
CiteScore
3.40
自引率
0.00%
发文量
31
审稿时长
6 weeks
期刊介绍: Now indexed in PubMed Aims and Scope Oncology and Therapy is an international, peer reviewed, rapid-publication (peer review in 2 weeks, published 3–4 weeks from acceptance) journal dedicated to the publication of high-quality pre-clinical, clinical (all phases), observational, real-world, and health outcomes research around the discovery, development, and use of therapeutics and interventions (including devices) across all therapeutic areas. Studies relating to diagnostics and diagnosis, pharmacoeconomics, public health, epidemiology, quality of life, and patient care, management, and education are also encouraged. The journal is of interest to a broad audience of healthcare professionals and publishes original research, reviews, communications and letters. The journal is read by a global audience and receives submissions from all over the world. Oncology and Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of all scientifically and ethically sound research. Rapid Publication The journal’s rapid publication timelines aim for a peer review decision within 2 weeks of submission. If an article is accepted it will be published online 3-4 weeks from acceptance. These rapid timelines are achieved through the combination of a dedicated in-house editorial team, who closely manage article workflow, and an extensive Editorial and Advisory Board who assist with rapid peer review. This allows the journal to support the rapid dissemination of research, whilst still providing robust peer review. Combined with the journal’s open access model this allows for the rapid and efficient communication of the latest research and reviews, allowing the advancement of clinical therapies. Personal Service The journal’s dedicated in-house editorial team offer a personal “concierge service” meaning that authors will always have a personal point of contact able to update them on the status of their manuscript. The editorial team check all manuscripts to ensure that articles conform to the most recent COPE, GPP and ICMJE publishing guidelines. This supports the publication of ethically sound and transparent research. We also encourage pre-submission enquiries and are always happy to provide a confidential assessment of manuscripts. Digital features and plain language summaries Oncology and Therapy offers a range of additional features designed to increase the visibility, readership and educational value of the journal’s content. Each article is accompanied by key summary points, giving a time-efficient overview of the content to a wide readership. Articles may be accompanied by plain language summaries to assist readers who have some knowledge of, but not in-depth expertise in, the area to understand the scientific content and overall implications of the article. The journal also provides the option to include various types of digital features including animated abstracts, video abstracts, slide decks, audio slides, instructional videos, infographics, podcasts and animations. All additional features are peer reviewed to the same high standard as the article itself. If you consider that your paper would benefit from the inclusion of a digital feature, please let us know. Our editorial team are able to create high-quality slide decks and infographics in-house, and video abstracts through our partner Research Square, and would be happy to assist in any way we can. For further information about digital features, please contact the journal editor (see ‘Contact the Journal’ for email address), and see the ‘Guidelines for digital features and plain language summaries’ document under ‘Submission guidelines’. Preprints We encourage posting of preprints of primary research manuscripts on preprint servers, authors'' or institutional websites, and open communications between researchers whether on community preprint servers or preprint commenting platforms. Posting of preprints is not considered prior publication and will not jeopardize consideration in our journals. Please see here for further information on preprint sharing: https://www.springer.com/gp/authors-editors/journal-author/journal-author-helpdesk/submission/1302#c16721550 Peer Review Process Upon submission, manuscripts are assessed by the editorial team to ensure they fit within the aims and scope of the journal and are also checked for plagiarism. All suitable submissions are then subject to a comprehensive single-blind peer review. Reviewers are selected based on their relevant expertise and publication history in the subject area. The journal has an extensive pool of editorial and advisory board members who have been selected to assist with peer review based on the afore-mentioned criteria. At least two extensive reviews are required to make the editorial decision, with the exception of some article types such as Commentaries, Editorials and Letters which are generally reviewed by one member of the Editorial Board. Where reviewer recommendations are conflicted, the editorial board will be contacted for further advice and a presiding decision. Manuscripts are then either accepted, rejected or authors are required to make major or minor revisions (both reviewer comments and editorial comments may need to be addressed). Once a revised manuscript is re-submitted, it is assessed along with the responses to reviewer comments and if it has been adequately revised it will be accepted for publication. Accepted manuscripts are then copyedited and typeset by the production team before online publication. Appeals against decisions following peer review are considered on a case by case basis and should be sent to the journal editor. Copyright Oncology and Therapy''s content is published open access under the Creative Commons Attribution-Noncommercial License, which allows users to read, copy, distribute, and make derivative works for non-commercial purposes from the material, as long as the author of the original work is cited. The author assigns the exclusive right to any commercial use of the article to Springer. For more information about the Creative Commons Attribution-Noncommercial License, click here: http://creativecommons.org/licenses/by-nc/4.0 Publication Fees Upon acceptance of an article, authors will be required to pay the mandatory Rapid Service Fee of £3650/€4500/$5100. The journal will consider fee discounts for developing countries and this is decided on a case by case basis. Open Access All articles published by Oncology and Therapy are published open access Contact For more information about the journal, including pre-submission enquiries, please contact managing editor Lydia Alborn at lydia.alborn@springer.com.
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