Monterosso Leanne, Taylor Karen, Platt Violet, Lobb Elizabeth, Musiello Toni, Bulsara Caroline, Stratton Kendall, Joske David, Krishnasamy Meinir
Centre for Nursing and Midwifery Research, School of Nursing and Midwifery, University of Notre Dame Australia, Fremantle, Western Australia, Australia.
St John of God Murdoch Hospital, Western Australia, Australia.
J Patient Exp. 2018 Mar;5(1):6-15. doi: 10.1177/2374373517715011. Epub 2017 Jul 26.
To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services.
An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis.
Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed.
Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience-providing the vital "link" that people described as missing from their survivorship care.
描述多发性骨髓瘤患者治疗后生存护理方面未得到满足的信息、心理、情感、社会、实际及身体需求与偏好，以为相关的、以人为本的生存服务发展提供参考。
一项探索性描述性研究，采用2个焦点小组，共14名参与者，诊断后6至49个月。
主题分析揭示了7个关键主题：信息需求、与医护人员的经历、应对副作用、与家人和朋友沟通、处理情绪、支持需求以及应对骨髓瘤的慢性病程。参与者描述了与他们需求相关的生存护理关键特征，并表示在主要治疗阶段完成后，他们希望采用更全面的以人为本的随访方法。
本研究中的参与者描述了在多个领域未得到满足的需求，这些需求随时间而变化。需要制定灵活的、以人为本的综合生存护理方法，以解决多发性骨髓瘤患者所经历的相当多的生活质量问题。由护士主导的护理可能提供一种可行的模式，以提供更好的患者体验——提供人们描述为其生存护理中缺失的关键“联系”。
