FEATURE chronic hematologic conditions did not live to adulthood , but now they do . Educating adult providers about these childhood conditions is essential to successful transfer of care .”
In an effort to help health-care professionals ease patients ’ transition from pediatric to adult care , the American Society of Hematology ( ASH ) recently released a toolkit that contains general resources for supporting quality care for all hematologic conditions , as well as for patients with hemophilia and SCD .
The toolkit was developed to provide guidance and tools for both primary-care internal medicine and subspecialty practices that treat patients transitioning from pediatric to adult care . The ASH toolkit includes transition readiness assessments and clinical summary forms for three segments : ( 1 ) patients with any hematologic condition , with an addendum that includes links to additional condition-specific guidelines and resources ; ( 2 ) patients with hemophilia ; and ( 3 ) patients with SCD . ( See the SIDEBAR for more information about the toolkit and where to access it .)
“ Adult providers must understand this transition and be flexible with younger patients ,” Dr . Gupta said . “ Adult practitioners cannot expect to be able to treat an 18 or 19 year old like they would a 35 or 50 year old . For these patients , the transition continues to happen even once they are in the adult care setting .”
Patient Preparedness
Physicians are not the only ones that need assistance in preparing for this transition . Patients must also learn about the health-care system they are entering and be encouraged to act as their own advocates .
“ Knowledge is important . These patients can ’ t advocate for themselves if they don ’ t know what they are advocating for ,” Dr . Gupta said .
To help assess their readiness for the transition , Dr . Gupta said he starts asking patients more questions about their condition when they are a couple of years away from the 18-year-old transfer cut-off point .
“ I ask them what cancer they have , what they have been treated with , and what that puts them at risk for in the future ,” he explained . “ A large number of them cannot answer these questions , which is not surprising because their parents have been their primary caregivers . The first step for these patients to successfully transition is to have adequate knowledge about their history and the challenges they might face in the future .”
A joint algorithm released by the American Academy of Pediatrics , American Academy of Family Physicians , and the American College of Physicians suggested familiarizing patients with the idea of transition at around 12 to 13 years of age , which is considered an important development time . 5 These discussions should introduce patients to the adult health-care system , covering topics such as how to call for an appointment , showing up early for appointments , arranging transportation to appointments , and how to handle unexpected health emergencies .
“ You have to start the discussion early ,” Dr . Sobota said . “ For many teenage patients , it never occurs to them that they will have to leave pediatric care .”
For patients with SCD , the transition to adult care may also come with social stigmatization . Young adults with SCD are often labeled as “ drug-seekers ” when they request specific medications to help manage their pain , which can sometimes lead them to avoid seeking medical care . Dr . Sobota recalled watching a video from Johns Hopkins , titled “ CRISIS : Experiences of People with Sickle Cell Disease Seeking Health Care for Pain ,” in which an adult woman with SCD explained what she had to go through to get medical care . 6 “ She makes sure she is professionally dressed and that her hair looks good before going to the emergency room so that she won ’ t be thought of as a drug-seeker ,” she said .
Dr . Sobota tries to prepare her patients for the realities of having a condition that many physicians do not know much about . Patients have to be empowered to advocate for themselves , she said , adding that she recommends that patients have a medical summary with them whenever they seek care .
Gaining Independence
Transitioning from a pediatric patient to an adult living with a hematologic condition and being treated in the adult health-care system demands that patients be more proactive and feel confident enough to speak up and ask questions , Dr . Advani said .
“ There are resources for young adults available within the adult health-care system , but patients may have to ask about them specifically if they want information , for example , about fertility or sexual function ,” Dr . Advani said .
During this time , adult providers should be prepared for a patient ’ s family to remain active participants in the patient ’ s health care . Although she has seen some patients who lack social support in the adult clinic , Dr . Advani said there are often others whose parents are very involved , even if the patients are living on their own or married .
Dr . Gupta added that the transition to adult care is often as much about the patient ’ s family or caregivers as it is the patient .
“ It is hard for family members who have spent five , 10 , or 15 years taking care of a child and being in charge of the medical decision making to transition out of that role as the patient achieves greater independence ,” he said . “ The young patient will never be ready if the parent is still answering all the questions or taking responsibility for making appointments or getting medications .” — By Leah Lawrence ●
REFERENCES
1 . Brousseau DC , Owens OL , Mosso AL , et al . Acute care utilization and rehospitalization for sickle cell disease . JAMA . 2010 ; 303:1288-94 .
2 . Vichinsky EP , Neumayr LD , Gold JI , et al . Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia . JAMA . 2012 ; 303:1823-31 .
3 . Suh E , Daugherty CK , Wroblewski K , et al . General internists ’ preferences and knowledge about the care of adult survivors of childhood cancer . A crosssectional study . Ann Intern Med . 2014 ; 160:11-7 .
4 . DeBaun MR , Telfair J . Transition and sickle cell disease . Pediatrics . 2012 ; 130:926-935 .
5 . American Academy of Pediatrics . Clinical Report — Supporting the health care transition from adolescence to adulthood in medical home . Pediatrics . 2011 ; 128:182-200 .
6 . Johns Hopkins University , “ CRISIS : Experiences of People with Sickle Cell Disease Seeking Health Care for Pain .” Accessed July 26 , 2016 from https :// www . youtube . com / watch ? v = FuelQDBOxXI .
ASH Releases Pediatric to Adult Care Transition Toolkit
The American Society of Hematology ( ASH ) recently launched a toolkit designed to help health-care professionals transition young adults with hematologic conditions into the adult care system . The toolkit provides both an assessment and summary form that are designed to facilitate conversations between patients , parents , and physicians as the patient transitions to adult care .
All forms in the toolkit were developed as part of a broader initiative led by the American College of Physicians ( ACP ) and included several member organizations from the ACP Council of Subspecialties ( CSS ), including ASH . A broad ACP work group designed the general form templates and the Society worked to customize the forms for hematology . The tools were reviewed by both pediatric and adult hematologists and ASH ’ s Committees on Practice and Quality , as well as the Society ’ s Officers before being reviewed by the American College of Physician ’ s Steering Committee and the American Academy of Pediatrics . In the future , ASH hopes to expand on these tools and develop additional toolkits for other hematologic conditions .
Readiness Assessment Forms The toolkit includes general hematology , hemophilia , and sickle cell disease ( SCD ) transition readiness assessment forms for the patient to complete . The forms were designed to assess patients ’ readiness for transition by testing their knowledge and skills related to their condition and its management . For adolescents about to make the transition , this form can be used as a way to figure out what additional education needs the patient has before they can be successfully transitioned . For adult patients , the form can assess any remaining gaps in self-care knowledge and skills .
Clinical Summary Forms The toolkit also includes clinical summary forms for general hematology , hemophilia , and SCD that provide a medical record summary , including essential clinical information related to the hematologic condition . The forms should be completed , signed , and dated on the last page by the referring provider and patient / family , reviewed by the patient , and given to the new adult provider .
More information on the toolkit is available at hematology . org / transitions .
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