利用遠程醫療擴大鐮狀細胞病的護理.pdf

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1、Removing barriers to care:Telehealth and Sickle Cell DiseaseDaniel Landau,MDMUSC department of TelehealthA common and commonly misunderstood conditionMutation develops from a substitution of valine glutamic acid in the beta globin chain What is the function of red blood cells?How long do they typica

2、lly survive?The“sickled”cell has half the life span of a non sickled red blood cell(hemolysis)Sickled cells clump together and block blood flow to tissue and organs Variations of the disease Sickle C disease Sickle Thalassemia Sickle Trait MoreHow to separate out different types100,000+in the US20 m

3、illion+worldwide1/13 African American births have trait1/365 African American births have disease In the US,the African American population is the most commonly affected but sickle cell disease can be seen across many different ethnicitiesLife span is 20 years shorter than the general population Eve

4、ry organ system is impacted by this disease Neurologic Ocular Heart Lungs Spleen Blood vessels Kidneys Muscles Joints10%+of children with sickle cell disease have stroke Life time implications Missed days of school,work,lower self esteemHeart failure and pulmonary hypertension are common complicatio

5、ns Ultimately are common reasons for mortalitySpleens undergo necrosis increasing risk of infections Director of Legislation to the House Ways and Means Committee/South Carolina House of Representatives Double majored in Political Science and History at Furman University in Greenville,SC and would g

6、o on to serve as Director of the director of legislation for the South Carolina House Ways and Means Committee.Rena played a pivotal role in raising awareness and advocating for better health care resources,support services and public understanding of SCD at the state level,leading to significant im

7、provements in research,patient care and legislation.Pediatric to adult transition Frequent emergency room use Lengthy hospitalizations Complicated medications Fractured care models Expectation of survival Access to carePatients sometimes get lostChange in insuranceDifferent type of careSevere pain d

8、oesnt always occur during office hours!Many centers do not have the ability to offer regular fluids or pain medicationsWe have little control in how long a crisis will occur,we can only offer supportive careResearchers found that the average life expectancy for publicly insured individuals with SCD

9、was 52.6 years,with male life expectancy at birth(49.3 years)being significantly lower than that of females at birth(55 years).Many patients live outside of areas with access to specialistsMany health care providers are unfamiliar with the complications of treatment and diseaseHigher use of emergenc

10、y rooms,longer hospital stays,limited access to clinical trials So many of the problems we have discussed are exacerbated by access concerns Hydroxyurea The most important medication for sickle cell disease Crizanlizumab Voxelotor L-glutamine Gene editing therapy$2,000,000 per person!Every option ha

11、s toxicities,and few patients are adequately treatedMany therapies are also misunderstood 50 random charts were sampled Analysis included Age Birth gender Use of Hydroxyurea Completion of telehealth appointment Previous relationship with hematologist within 1 year Results:Age:48(25-68)Gender:25 M/25

12、 F Hydroxyurea use:32%Connection to telehealth:76%Greater than 40:84%Younger than 40:61%Previous relationship with a hematologist:18%Few patients have been adequately treatedWithout proper therapy,the risk of complications risesWithout proper therapy,hospital utilization rises Expanding care via tel

13、ehealth can address major barriers In a random review of 25 patients Average distance to MUSC was 27.8 miles(1.2-96.5 miles)56%lives 20 miles away 68%would need to travel more than 30 minutes to access care with hematology Data from other papers suggests most patients wont travel more than 20 minutes for non emergency care Offering an easier way to establish care could help avoid the distance barrier Offering telehealth visits to larger populations Utilizing telehealth to improve transition from pediatric to adult care Addressing inpatient care/ER utilization