Section 6 | High-Quality Care Achieving optimal health outcomes for people living with SCD depends on delivering comprehensive, coordinated care features of a medical home model. RCCs report that when care is coordinated, they can improve access and quality that, in turn, improve outcomes. All RCCs completed activities in care coordination. Also, for children and young adults, continuous care includes ensuring successful care transition between pediatric and adult care providers.
We’re fortunate that the hospital has decided to support care of adult patients. I was hired to have that focus — clinically helping the adult nonmalignant hematology patients. The hospital recognized this need because they have been caring for these patients and seeing that when they reach adult age, [there is] no other medical home available that had the expertise to become the primary medical home to care for patients with sickle cell disease. MD, Pediatric Hematology/ Oncology
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
Comprehensive, Coordinated, and Continuous Care Comprehensive Care: Addressing Psychosocial Needs Comprehensive care for this population includes attention to both physical and psychosocial needs. While much clinical knowledge has been gained about SCD, there is a paucity of psychosocial information, such as the impact of the condition on a person’s mental health and daily functioning, documentation on years of life lost, other areas of morbidity, and the social stigma of SCD. This Report has provided information on treating physical issues related to SCD. But providers relayed the need for greater attention to psychosocial issues and social realities for patients. For example, one site pointed out the challenge of planning care transition for young adults who may not have housing, or discussing the importance of eating a balanced meal, taking HU, managing a complicated condition, or not seeing follow-through with children whose home life may not be stable. Sites used both traditional methods of care and service and innovative programming to address these needs, including patient-centered strategies like self-hypnosis, biofeedback, yoga, and mindfulness; some implemented new protocols, including having children with SCD seen by a pediatric We are also psychologist early in care; others learning about mental dedicated social workers, SCD and behavioral health health advocates, and pediatric issues. This is something families neuropsychologists to address are openly and loudly talking about. existing and emerging needs. Depression and other concerns Using regular mental health across the spectrum, from suicide to assessments (PHQ-9, a substance abuse and running away measurement for depression, from home. We are running behind and GAD-7, a measurement and trying to catch up to address for anxiety disorders), some these family issues. sites discovered that patients who have pain issues often have President and CEO, emotional issues and distress that CBO may be exacerbating their pain. To address this, they focused on pain and
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