Objective: 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.
Conclusions: 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.
Keywords: Families; Integrative Medicine; Interdisciplinary Care; Mental Health; Sickle Cell Disease; Youth.
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