scholarly journals Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease

2017 ◽  
Vol 42 (9) ◽  
pp. 1016-1027 ◽  
Author(s):  
Jerlym S. Porter ◽  
Kimberly M. Wesley ◽  
Mimi S. Zhao ◽  
Rebecca J. Rupff ◽  
Jane S. Hankins
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Care Transition ◽  
Cell Disease ◽  
Adult Care

Outcome of Transitioning Pediatric Patients with Sickle Cell Disease to Adult Programs.

Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 3743-3743 ◽  
Author(s):  
Samir K. Ballas ◽  
Carlton Dampier
Keyword(s):  
Chronic Pain ◽  
Young Adults ◽  
Pain Management ◽  
Sickle Cell Disease ◽  
Medical Care ◽  
Sickle Cell ◽  
Adolescents And Young Adults ◽  
Cell Disease ◽  
Adult Care ◽  
Female Ratio

The transition of medical care of patients with sickle cell disease (SCD) from pediatric to adult providers represents a milestone in their lives. Major concerns among adolescents and young adults about transition include taking responsibility for self, making own decisions, cost of medical care, fear of suboptimal pain management, and reluctance to leave known providers. In this study we present our experience in the process of transition to adult care and its outcome over the last ten years. Adolescents and young adults were given information about the nature of medical care provided by adult internists and hematologists. The sickle cell programs available in the city were described. Moreover, site visits to the hospitals where adult care was to be provided were arranged. During these visits, adolescents and young adults had the chance to meet the hematologist and other potential providers and ask questions, visit the emergency room, the clinic, and the sickle day unit if applicable. Patients were empowered to choose the program to which they wished to be transitioned. During the last 10 years, 90 adolescents and young adults (See Table) with SCD (Sickle Cell Anemia [SS], Hemoglobin SC Disease, and Sickle Thalassemia [ST]) were transitioned to the adult sickle cell program of Thomas Jefferson University. Age of transition varied between 18 and 25 years. Eighteen patients (20%) died. Age at death was 24.9 ± 2.95 years and the male/female ratio was 10:8. Complications of sickle cell disease after transition included leg ulcers, stroke, avascular necrosis, anxiety, depression, and priapism. Nineteen patients (10 males, 9 females) were employed. Twenty-nine (32%) patients developed chronic pain syndrome and its sequelae. Many patients failed to achieve their childhood goals. The data show that a significant number of patients die within 10 years after transition. The quality of life of survivors is suboptimal and drifts into issues of chronic pain management in the adult environment. Identifying these issues may provide predictors that identify children at risk to have undesirable outcomes after transition. Aggressive management and refining the process of transition should improve the outcome after transition. Distribution of the Transitioned Patients SS SC ST Total Male 31 8 4 43 Female 34 8 5 47 Total 65 16 9 90

scholarly journals Impact of a paediatric-adult care transition programme on the health status of patients with sickle cell disease: study protocol for a randomised controlled trial (the DREPADO trial)

2019 ◽  
Author(s):  
Delphine Hoegy ◽  
Nathalie Bleyzac ◽  
Alexandra Gauthier-Vasserot ◽  
Giovanna Cannas ◽  
Angélique Denis ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Coping Skills ◽  
Morbidity And Mortality ◽  
Care Transition ◽  
Cell Disease ◽  
Adult Care ◽  
Biopsychosocial Approach ◽  
Adult Transition ◽  
And Coping

Abstract Background: Thanks to the advancements in medical care, a majority of sickle cell disease patients worldwide live beyond 18 years of age, and therefore patients initially followed in paediatric departments are then transferred to adult departments. This paediatric-adult care transition is a period with an increased risk of discontinuity of care and so morbidity and mortality. During this period, the patient will have to manage new interlocutors and places of care, and personal issues related to the period of adolescence. To take into consideration all these aspects, an interesting approach is to refer to the patient as a whole system as presented in biopsychosocial approach. The aim of this trial is to evaluate the impact of the proposed biopsychosocial paediatric-adult transition programme. Methods: The DREPADO study is a multicentre randomised control trial comparing a control group ( Arm A ) versus an interventional group with paediatric-adult transition programme based on a biopsychosocial approach ( Arm B ). To be included, patients should suffer of SS, SC or Sβ-form of sickle cell disease and aged between 16 and 17 years. The randomisation in a 1:1 ratio assigns the Arm A or B . The primary outcome is the number of hospital admissions and emergency in the index hospital for complications, in the 2-years after the first consultation in the adult department of care. Secondary outcomes consider the quality of life, but also included coping skills such as self-efficacy feeling and disease knowledge. To provide patient and parent knowledge and coping skills, the transition program is composed of 3 axis : educational, psychological and social, conducted in individual and group.Discussion: By providing self-care knowledge and coping skills related to SCD and therapeutics, helping patient's empowerment related to pain management and emotions and facilitating the relationship to oneself, others and care in the Arm B of DREPADO study, we believe that the morbidity and mortality of patients with SCD may be reduced after the proposed paediatric-adult transition programme. Trial registration: ClinicalTrials.gov, ID: NCT03786549; registered on 17 th December 2018; https://clinicaltrials.gov/.

Comparing Patterns for Transitioning the Care of Young Adults with Sickle Cell Disease Versus Hemophilia: The Toronto Experience

Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 2072-2072 ◽  
Author(s):  
Ewurabena Simpson ◽  
Richard Ward ◽  
Melanie Kirby ◽  
Isaac Odame
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Sickle Cell Disease ◽  
Medical Care ◽  
Disease Severity ◽  
Sickle Cell ◽  
Cell Disease ◽  
Adult Care ◽  
Effective Transfer

Abstract Abstract 2072 Background: The Hospital for Sick Children (HSC) in Toronto, Canada cares for more than 700 children with sickle cell disease (SCD), which is the largest Canadian population of children with SCD. Since 2009, the SCD Program at HSC has partnered with adult hematologists within the Red Blood Cell Disorders program at Toronto General Hospital (TGH) to develop a coordinated strategy for transitioning the care of young adults with SCD. Hemophilia is a chronic hematological condition which, like SCD, has a spectrum of disease severity that requires multidisciplinary follow up. At HSC, we care for nearly 200 patients with hemophilia A and B and have a long-established partnership with adult hematologists, which has led to an effective transfer of patients with hemophilia into adult care. In Ontario, adult health providers are remunerated according to a fee-for-service billing schedule. In contrast, pediatric subspecialists are mainly salaried under an alternate funding plan. Until 2010, adult hematologists who provided medical care for individuals with hemophilia received a significantly higher pay scale than those who cared for individuals with SCD. This was changed in July 2010 so that adult hematologists receive commensurate remuneration for services rendered for both hemophilia- and SCD-related medical care. Objectives: 1. To compare the patterns for transitioning patients of varying disease severity within the pediatric and adult SCD and hemophilia programs in Toronto, Ontario. 2. To identify barriers and enablers that have influenced the transition of young adults with SCD within a universal health care system. Methods: Data for active, transitioned and inactive patients in the HSC and TGH clinical programs are maintained in a database at HSC. These patient numbers were gathered according to sickle cell genotype. Similar data were available for hemophilia patients who were transitioned from HSC to adult care. Chi-square analyses were used to compare the proportions of patients in the sickle cell and hemophilia programs that were transitioned between 2009 and 2011. Results: Conclusion: The HSC-TGH- partnership has significantly reduced the number of youth with SCD who continue to be followed at HSC or are lost to follow up. However, a significant number of young adults within the HSC SCD program still need to be transitioned to adult care. For the sustainable expansion of this transitional care strategy, health policymakers must collaborate with tertiary and community level health care providers to develop a coordinated and distributed strategy for the effective delivery of comprehensive health care services for young adults with SCD. Disclosures: No relevant conflicts of interest to declare.

scholarly journals Understanding barriers to transition from pediatric to adult care among young adults with sickle cell disease to develop a transition mentor program.

2020 ◽  
Author(s):  
Adrienne S. Viola ◽  
Kristine Levonyan-Radloff ◽  
Richard Drachtman ◽  
Jerlym Porter ◽  
Beth Savage ◽  
...  
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Mentor Program ◽  
Cell Disease ◽  
Adult Care

scholarly journals Transitioning from Pediatric to Adult Care: The Role of an Education Curriculum for Adolescents and Young Adults with Sickle Cell Disease

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2994-2994
Author(s):  
E. Leila Jerome Clay ◽  
Carrie Gann ◽  
Kyle Jordan ◽  
Ashley Howard ◽  
Dawn Gates ◽  
...  
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Medical Curriculum ◽  
Adolescent And Young Adult ◽  
Education Curriculum ◽  
Cell Disease ◽  
Adult Care ◽  
Post Test ◽  
Transition Education

Abstract Introduction: Sickle Cell Disease (SCD) is the most common inherited blood disorder, affecting over 100,000 people in the United States. The latest medical managements have yielded better outcomes in mortality and morbidity among people with SCD. Despite these advancements, emerging young adults have complications transitioning from pediatric care to adult care and remain with the highest mortality rate in the population. Got Transition is a federally funded national resource center that aims to support youth and young adults moving from pediatric to adult care by implementing the Six Core Elements of Transition. At our institution, we established a transition program aimed at improving clinical care, medical management, and improvement in the transition from pediatric to adult medical care. Our goal was to develop a standardized, age appropriate sickle cell education curriculum to implement at clinic visits for our patients aged 13 and older. Hypothesis: We hypothesize that with a structured transition curriculum, we would be able to improve patient knowledge in medical aspect of the disease, academic resources and a better understanding of their complex psychosocial needs. Methods: We developed a transition program called Adolescent and Young Adult Sickle Cell Uplift and Learn Program for Transition (AYA SCULPT) that would focus on patients starting at 13 years old with a multidisciplinary approach of care. We adopted the Got Transition model implementing the Six Core Elements of Transition. Our team not only wanted to address educational topics related to their medical care, but also psychosocial and academic topics. A transition education curriculum was created spanning three age groups on the three major topics and further broken up into three smaller sections for clinic use to accommodate for time restraints (Table 1). A pilot of the medical curriculum was started August 2019 addressing medical topics relating to better understanding of sickle cell disease. We then introduced our psychosocial curriculum in January 2021. A member of our comprehensive sickle cell team provides the four-question pre-test to the patient at the beginning of their regularly scheduled clinic appointment. At the end of the appointment the nurse or provider will grade the pre-test and provide verbal education as well as printed material on the topics for the day. Scoring and topics are tracked in the patient's note as well as in a transition education database. At the patient's next visit, the same test is administered as a post-test in order to determine knowledge acquired and retention of the materials. Post-test scores are also recorded in the patient note and transition education database. Once the patient finishes a module, we move to the next topic at the next regularly scheduled visit. Depending on the patient's genotype and medication management, post-tests can be given between two to six months after the pre-test. Results: Scores from pre-test were compared to those of post-test for patients that had the opportunity to complete the medical curriculum quizzes. One hundred and fifty six patients range from age 13-21 were included in this pilot study. Of patients aged 19-21, 69% have taken at least one pre-test and post-test for the medical education (63 total pre- and post-tests). Forty-three (78%) patients aged 16-18 have taken at least one pre-test and post-test (75 total pre- and post-tests). Thirty-three (67%) patients aged 13-15 have taken at least one pre-test and post-test (53 total pre- and post-tests). Results were categorized as score increased, score unchanged (pre-test score was not 100%), maintained 100% (unable to increase in score), and score decreased. In every age group, the category with the most results was "score increased." Shown in Table 2. Conclusion: Further extrapolation suggests that the medical curriculum provided in clinic improves the sickle cell knowledge in this adolescent and young adult population. Though all age groups improved, the biggest improvement was noted in knowledge with our 13-15 year olds. These results suggest that early transition education can be impactful even if started at the early phases of adolescence. Studies are still ongoing with our medical curriculum and early psychosocial data is beginning to support our previous findings. As part of transition health care, focusing on disease education can provide better knowledge and hopefully improve patient outcomes. Figure 1 Figure 1. Disclosures Clay: Novartis: Honoraria; GBT: Membership on an entity's Board of Directors or advisory committees.

Mortality in Sickle Cell Patient Transitioning from Pediatric to Adult Program: 10 Years Grady Comprehensive Sickle Cell Center Experience.

Blood ◽  
2008 ◽  
Vol 112 (11) ◽  
pp. 1426-1426 ◽  
Author(s):  
Si mbo O Aduloju ◽  
Sheila Palmer ◽  
James R. Eckman
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Mortality Rate ◽  
Sudden Death ◽  
Iron Overload ◽  
Organ Failure ◽  
Cause Of Death ◽  
Sickle Cell ◽  
Cell Disease ◽  
Adult Care

Abstract Over the last three decades there has been improvement in survival in children with sickle cell disease. Overall survival from birth to age 18 of 86% and 95% has been reported in children with sickle cell anemia (HbSS) and sickle hemoglobin C (Hb SC) disease respectively. These encouraging results are secondary to initiation of preventive measures like newborn screening, penicillin prophylaxis, immunization and stroke prevention and other supportive therapies. Ballas (Blood2004;104 supl:Abstr 3743) reported high death rate for young adults with the disease. To determine the death rates and cause of death in our population, we did a retrospective review of our patients who had recently transitioned into adult care. Mortality rate and circumstances of death in a 10 year period of transition from pediatric to adult program in Georgia Comprehensive Sickle Cell Center at Grady Memorial Hospital between 1996 and 2006 were determined. Total number of deaths was obtained from the clinical database. Death, autopsy and medical records were reviewed to determine the cause and circumstances of death. Between 1996 and 2006, 387 young adults with sickle cell disease (HbSS, HbSC, HbS beta thalassemia) transitioned to the adult program at age 18. Twenty two (5.8%) patients died during their first 10 years of transition. Mean age at death was 23.4 (range 21.6–26) and male to female ratio was 1.2 to 1. Ten patients (45%) died due to chronic organ failure all due to chronic iron overload (end stage liver disease in 8 and congestive heart failure in 2). Eight patients (36%) died due to complications of acute vaso-occlusive crisis (sudden death in 4, acute chest/multi-organ failure in 4) while 4 patients (18%) died of non-sickle related causes. Three of four who died of sudden death has documented pulmonary hypertension. Our mortality rate is lower than those reported by Ballas with the most common cause of death being complications of iron overload in chronically transfused patients. Specific interventions targeted at improving management of iron overload need to be developed for the increasing numbers of patients on chronic transfusion transitioning into adult care.

scholarly journals Social and Psychological Factors Associated With Health Care Transition for Young Adults Living With Sickle Cell Disease

2019 ◽  
Vol 32 (1) ◽  
pp. 21-29
Author(s):  
Dora Clayton-Jones ◽  
Nadine Matthie ◽  
Marsha Treadwell ◽  
Joshua J. Field ◽  
Amy Mager ◽  
...  
Keyword(s):  
Health Care ◽  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Psychological Factors ◽  
Mortality Rates ◽  
Care Transition ◽  
Cell Disease ◽  
Factors Associated ◽  
Health Care Transition

Introduction: Due to advances in disease management, mortality rates in children with sickle cell disease (SCD) have decreased. However, mortality rates for young adults (YA) increased, and understanding of social and psychological factors is critical. The aim of this study was to explore factors associated with health care transition experiences for YA with SCD. Method: This was a qualitative descriptive study. A 45-minute semistructured interview was conducted with 13 YA ( M = 21.5 years, SD = 1.73). Results: Results suggest that social and psychological factors and self-management experiences influence health care transition. Eight themes emerged: “need for accessible support”; “early assistance with goal setting”; “incongruence among expectations, experiences, and preparation”; “spiritual distress”; “stigma”; “need for collaboration”; “appreciation for caring providers”; and “feeling isolated.” Discussion: Consideration of cultural contexts will guide nurses in supporting health care transition. Designing culturally relevant interventions that address unique needs for YA living with SCD is warranted.

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