Esquivel N S, Tzeng J P, Treiman K, Husick C H, Sheridan J, Ortiz-Ravick L, Sae-Hau M, Brown L, DeMairo K, Bell N, Disare K, Weiss E S
RTI International, Research Triangle Park, Durham, NC, USA.
The Leukemia & Lymphoma Society, Rye Brook, NY, USA.
J Cancer Educ. 2025 Feb;40(1):124-131. doi: 10.1007/s13187-024-02480-3. Epub 2024 Aug 16.
Myeloma is the third most common blood cancer and one of the most complex and expensive cancers to treat. Black Americans face health disparities related to myeloma incidence, age at diagnosis, access to novel treatments, and mortality. To help reduce health disparities among Black Americans through education and outreach, the Leukemia & Lymphoma Society has implemented its Myeloma Link initiative. In 2022, a formative, qualitative evaluation was conducted across the 15 U.S. cities that implemented Myeloma Link to better understand the information and communication needs and preferences of three groups: patients, community members, and primary care providers (PCPs). Data collection included interviews with eight patients, two focus groups with a total of ten community members, and interviews with six PCPs. Patients expressed wanting information about treatment experiences, including clinical trials, and emotional and peer support services, particularly from other Black American patients. Community members were largely unfamiliar with myeloma and desired outreach via trusted community organizations about disease signs and symptoms. Both groups discussed the importance of self-advocacy within the current healthcare system and wanted actionable messaging, rather than messaging leading with disparities statistics. PCPs described systemic capacity and time challenges in the context of needing to address more frequently encountered health conditions; nonetheless, PCPs welcomed information and brief trainings about myeloma diagnosis and treatment options, referrals to specialists, and how to improve care, prognosis, and caregiver support. Findings underscore the importance of outreach initiatives such as Myeloma Link to help meet these needs and reduce health disparities.
骨髓瘤是第三大常见的血液癌症，也是最难治疗且治疗费用最高的癌症之一。美国黑人在骨髓瘤发病率、诊断年龄、获得新型治疗方法的机会以及死亡率方面面临健康差异。为了通过教育和宣传来帮助减少美国黑人之间的健康差异，白血病与淋巴瘤协会实施了其骨髓瘤联系倡议。2022年，对实施骨髓瘤联系倡议的美国15个城市进行了一次形成性的定性评估，以更好地了解患者、社区成员和初级保健提供者这三个群体的信息和沟通需求及偏好。数据收集包括对8名患者的访谈、两个共10名社区成员参加的焦点小组讨论以及对6名初级保健提供者的访谈。患者表示希望获得有关治疗经历的信息，包括临床试验，以及情感和同伴支持服务，特别是来自其他美国黑人患者的支持。社区成员大多不熟悉骨髓瘤，希望通过受信任的社区组织获得关于疾病体征和症状的宣传。两组都讨论了在当前医疗系统中自我倡导的重要性，并希望获得可采取行动的信息，而不是以差异统计数据开头的信息。初级保健提供者描述了在需要处理更常见健康状况的背景下的系统能力和时间挑战；尽管如此，初级保健提供者欢迎有关骨髓瘤诊断和治疗选择、转介给专科医生以及如何改善护理、预后和照顾者支持的信息和简短培训。研究结果强调了骨髓瘤联系倡议等宣传举措对于满足这些需求和减少健康差异的重要性。
