Department of Pain, Palliative Care, and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, 2525 Chicago Avenue South, Suite 32-T5, Minneapolis, MN 55304, USA.
Department of Hematology and Oncology, Children's Hospitals and Clinics of Minnesota, 2525 Chicago Avenue South, Suite 32-T5, Minneapolis, MN 55304, USA.
Complement Ther Med. 2020 Mar;49:102333. doi: 10.1016/j.ctim.2020.102333. Epub 2020 Jan 30.
Sickle Cell Disease (SCD) is an inherited blood disorder that includes acute pain episodes and chronic pain that can dramatically impact quality of life and goal-achievement. Our staff had limited success in connecting families with the Pain, Palliative Care and Integrative Medicine Clinic (PPCIM) to receive specialized skills for pain management. We created a partnership between Hematology and PPCIM to provide SCD patients/families with needed resources.
DESIGN/SETTING: In 2016, key stakeholders collaborated to create a Sickle Cell Wellness Clinic (SCWC) clinic to provide families access to integrative medicine and wellness strategies. Design/structure, based on family focus group data and staff expertise, included a half-day, 7-discipline clinic housed in the PPCIM space. Patients with SCD, ages 8-20, learned strategies in an effort to improve health care utilization and increase overall quality of life.
MAIN OUTCOME MEASURES/RESULTS: Feedback from two successful pilot clinics in 2017 was incorporated into the formal roll-out of SCWC in 2018. SCWCs continued monthly for one year, serving a total of 20 families post-pilot. SCD patients increased follow-up appointment engagement in the PPCIM clinic following SCWC and reported high levels of satisfaction with their healthcare experience.
It is feasible to run a multidisciplinary clinic focused on pain management, coping skills, and healthy living with SCD. Providers benefited from the opportunity to collaborate with other disciplines. Patient and family feedback was positive, highlighted benefits of being introduced to new modalities, and reported advantages of meeting other patients/families in a new setting.
镰状细胞病（SCD）是一种遗传性血液疾病，包括急性疼痛发作和慢性疼痛，这会极大地影响生活质量和目标的实现。我们的工作人员在将家庭与疼痛、姑息治疗和综合医学诊所（PPCIM）联系起来以获得专门的疼痛管理技能方面收效甚微。我们在血液科和 PPCIM 之间建立了合作伙伴关系，为 SCD 患者/家庭提供所需的资源。
设计/背景：2016 年，主要利益攸关方合作创建了镰状细胞病综合健康诊所（SCWC），为家庭提供综合医学和健康策略。该诊所的设计/结构基于家庭焦点小组数据和工作人员的专业知识，包括一个半天、7 个学科的诊所，位于 PPCIM 空间内。8-20 岁的 SCD 患者学习了改善医疗保健利用和提高整体生活质量的策略。
主要结果/措施：2017 年两次成功的试点诊所的反馈意见被纳入 2018 年 SCWC 的正式推出。SCWC 每月继续进行一次，在试点后共为 20 个家庭提供服务。在 SCWC 之后，SCD 患者在 PPCIM 诊所的后续预约参与度增加，并对他们的医疗体验表示高度满意。
运行一个专注于疼痛管理、应对技能和健康生活的多学科诊所是可行的。提供者受益于与其他学科合作的机会。患者和家庭的反馈是积极的，强调了引入新方法的好处，并报告了在新环境中遇到其他患者/家庭的优势。
