Lisa Dwyer Orr, Dee Lin, Bingcao Wu, Thomas W LeBlanc, Beth Faiman, Jenny Ahlstrom, Margaret Yung, Kathleen L Deering, Victoria Kulbokas, Joshua L Feldman, Erika Kline, Noa Biran
{"title":"多发性骨髓瘤治疗决策中患者、护理伙伴和医生的声音。","authors":"Lisa Dwyer Orr, Dee Lin, Bingcao Wu, Thomas W LeBlanc, Beth Faiman, Jenny Ahlstrom, Margaret Yung, Kathleen L Deering, Victoria Kulbokas, Joshua L Feldman, Erika Kline, Noa Biran","doi":"10.2147/PPA.S474722","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>Treatment decision-making for multiple myeloma (MM) is complex. Individuals involved in decision-making may value treatment attributes differently based on their role as a patient, care partner, or physician. This study describes those attributes, and what is most important by role.</p><p><strong>Methods: </strong>We conducted a cross-sectional online survey with consenting adult patients with MM, MM care partners, and physicians treating MM. Respondents were recruited from US panels (Inspire and M3 Global Research) between September and December 2022. Survey items were informed by a targeted literature review, qualitative interviews, and a steering committee comprising clinical experts, a patient advocate, patient, and care partner. Descriptive statistics were generated and reported in aggregate.</p><p><strong>Results: </strong>Email invitations were sent to 8071 Inspire members interested in or posting about MM. Of these, 4427 viewed the invitation, 941 responded, and 156 patients and care partners completed the survey (17% of respondents). For physicians, 5588 were invited via Email by M3 Global Research, with 761 viewing the invitation, 214 accessing the survey link, and 137 completing the survey (64% of respondents). Duration of response, side effects, and patients' quality-of-life (QoL) were the top three treatment attributes selected across the three cohorts; alignment of these attributes was consistent among patients regardless of disease severity. Separately, patients rated QoL and the amount of caregiving needed during/after treatment as the most important factors for future treatment decisions. If more effective MM treatments were offered, care partners were more willing to assume greater family burden (77%) compared to patients (49%), and patients were more accepting of potential serious side effects (50%) than were care partners (34%).</p><p><strong>Conclusion: </strong>Patients with MM, care partners, and physicians consider and value various treatment decision-making factors. Recognizing and addressing these differences is critical to meeting patients' preferences, needs, and optimizing patient outcomes.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"18 ","pages":"2147-2158"},"PeriodicalIF":2.0000,"publicationDate":"2024-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11498144/pdf/","citationCount":"0","resultStr":"{\"title\":\"Patient, Care Partner, and Physician Voices in Treatment Decision-Making for Multiple Myeloma.\",\"authors\":\"Lisa Dwyer Orr, Dee Lin, Bingcao Wu, Thomas W LeBlanc, Beth Faiman, Jenny Ahlstrom, Margaret Yung, Kathleen L Deering, Victoria Kulbokas, Joshua L Feldman, Erika Kline, Noa Biran\",\"doi\":\"10.2147/PPA.S474722\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong>Treatment decision-making for multiple myeloma (MM) is complex. Individuals involved in decision-making may value treatment attributes differently based on their role as a patient, care partner, or physician. This study describes those attributes, and what is most important by role.</p><p><strong>Methods: </strong>We conducted a cross-sectional online survey with consenting adult patients with MM, MM care partners, and physicians treating MM. Respondents were recruited from US panels (Inspire and M3 Global Research) between September and December 2022. Survey items were informed by a targeted literature review, qualitative interviews, and a steering committee comprising clinical experts, a patient advocate, patient, and care partner. Descriptive statistics were generated and reported in aggregate.</p><p><strong>Results: </strong>Email invitations were sent to 8071 Inspire members interested in or posting about MM. Of these, 4427 viewed the invitation, 941 responded, and 156 patients and care partners completed the survey (17% of respondents). For physicians, 5588 were invited via Email by M3 Global Research, with 761 viewing the invitation, 214 accessing the survey link, and 137 completing the survey (64% of respondents). Duration of response, side effects, and patients' quality-of-life (QoL) were the top three treatment attributes selected across the three cohorts; alignment of these attributes was consistent among patients regardless of disease severity. Separately, patients rated QoL and the amount of caregiving needed during/after treatment as the most important factors for future treatment decisions. If more effective MM treatments were offered, care partners were more willing to assume greater family burden (77%) compared to patients (49%), and patients were more accepting of potential serious side effects (50%) than were care partners (34%).</p><p><strong>Conclusion: </strong>Patients with MM, care partners, and physicians consider and value various treatment decision-making factors. Recognizing and addressing these differences is critical to meeting patients' preferences, needs, and optimizing patient outcomes.</p>\",\"PeriodicalId\":19972,\"journal\":{\"name\":\"Patient preference and adherence\",\"volume\":\"18 \",\"pages\":\"2147-2158\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2024-10-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11498144/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Patient preference and adherence\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.2147/PPA.S474722\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q2\",\"JCRName\":\"MEDICINE, GENERAL & INTERNAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Patient preference and adherence","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.2147/PPA.S474722","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
引用次数: 0
摘要
导言:多发性骨髓瘤(MM)的治疗决策非常复杂。参与决策的个人可能会根据其作为患者、护理伙伴或医生的角色而对治疗属性有不同的评价。本研究描述了这些属性,以及不同角色最看重的属性:我们对征得同意的成年 MM 患者、MM 护理伙伴和治疗 MM 的医生进行了横断面在线调查。受访者于 2022 年 9 月至 12 月间从美国调查小组(Inspire 和 M3 Global Research)招募。调查项目参考了有针对性的文献综述、定性访谈以及由临床专家、患者权益倡导者、患者和护理伙伴组成的指导委员会的意见。我们生成了描述性统计数据并进行了汇总报告:向 8071 名对 MM 感兴趣或发布 MM 相关信息的 Inspire 会员发送了电子邮件邀请。其中 4427 人查看了邀请函,941 人做出了回复,156 名患者和护理伙伴完成了调查(占回复者的 17%)。在医生方面,M3 Global Research 通过电子邮件邀请了 5588 名医生,其中 761 人查看了邀请函,214 人访问了调查链接,137 人完成了调查(占受访者的 64%)。反应持续时间、副作用和患者生活质量(QoL)是三组患者选择的前三项治疗属性;无论疾病严重程度如何,患者对这些属性的评价都是一致的。另外,患者将生活质量和治疗期间/治疗后所需的护理量评为未来治疗决策的最重要因素。如果能提供更有效的 MM 治疗,护理伙伴(77%)比患者(49%)更愿意承担更大的家庭负担,患者(50%)比护理伙伴(34%)更能接受潜在的严重副作用:结论:MM 患者、护理伙伴和医生会考虑并重视各种治疗决策因素。认识并解决这些差异对于满足患者的偏好和需求以及优化患者预后至关重要。
Patient, Care Partner, and Physician Voices in Treatment Decision-Making for Multiple Myeloma.
Introduction: Treatment decision-making for multiple myeloma (MM) is complex. Individuals involved in decision-making may value treatment attributes differently based on their role as a patient, care partner, or physician. This study describes those attributes, and what is most important by role.
Methods: We conducted a cross-sectional online survey with consenting adult patients with MM, MM care partners, and physicians treating MM. Respondents were recruited from US panels (Inspire and M3 Global Research) between September and December 2022. Survey items were informed by a targeted literature review, qualitative interviews, and a steering committee comprising clinical experts, a patient advocate, patient, and care partner. Descriptive statistics were generated and reported in aggregate.
Results: Email invitations were sent to 8071 Inspire members interested in or posting about MM. Of these, 4427 viewed the invitation, 941 responded, and 156 patients and care partners completed the survey (17% of respondents). For physicians, 5588 were invited via Email by M3 Global Research, with 761 viewing the invitation, 214 accessing the survey link, and 137 completing the survey (64% of respondents). Duration of response, side effects, and patients' quality-of-life (QoL) were the top three treatment attributes selected across the three cohorts; alignment of these attributes was consistent among patients regardless of disease severity. Separately, patients rated QoL and the amount of caregiving needed during/after treatment as the most important factors for future treatment decisions. If more effective MM treatments were offered, care partners were more willing to assume greater family burden (77%) compared to patients (49%), and patients were more accepting of potential serious side effects (50%) than were care partners (34%).
Conclusion: Patients with MM, care partners, and physicians consider and value various treatment decision-making factors. Recognizing and addressing these differences is critical to meeting patients' preferences, needs, and optimizing patient outcomes.
期刊介绍:
Patient Preference and Adherence is an international, peer reviewed, open access journal that focuses on the growing importance of patient preference and adherence throughout the therapeutic continuum. The journal is characterized by the rapid reporting of reviews, original research, modeling and clinical studies across all therapeutic areas. Patient satisfaction, acceptability, quality of life, compliance, persistence and their role in developing new therapeutic modalities and compounds to optimize clinical outcomes for existing disease states are major areas of interest for the journal.
As of 1st April 2019, Patient Preference and Adherence will no longer consider meta-analyses for publication.