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  • 2010-2014  (3)
  • 1
    Online Resource
    Online Resource
    American Society of Hematology ; 2014
    In:  Blood Vol. 124, No. 21 ( 2014-12-06), p. 2168-2168
    In: Blood, American Society of Hematology, Vol. 124, No. 21 ( 2014-12-06), p. 2168-2168
    Abstract: The number of hemoglobinopathy patients in North America continues to increase, due to high rates of immigration from countries with high prevalence and improved survival. Recent research has led to evidence-based improvements in acute and chronic care of patients with sickle cell disease and thalassemia. Studies have noted gaps in clinicians’ knowledge about management of hemoglobinopathies, with the result that common presentations, such as sickle vaso-occlusive episodes, are often mismanaged. Hematologists completing training in North America require the knowledge and expertise to manage these medically complex patients. To ascertain the extent of hemoglobinopathy teaching and exposure in Canadian Adult and Pediatric Hematology Training Programs, and to assess the perceived importance of hemoglobinopathy knowledge, we administered an online survey to all Training Program Directors (TPDs), and to all residents who were currently enrolled or who had completed training in the previous year. Surveys were available in English and French. The response rate for TPDs was 92% (22/24). Ninety five percent of PDs felt that hemoglobinopathy learning is “important” or “very important” for hematology trainees in their region. Four programs have a mandatory hemoglobinopathy rotation, 14 programs have mandatory hemoglobinopathy clinic participation, and 17 programs have mandatory hemoglobinopathy lab exposure. Laboratory time ranges widely, from “0-2 hours” to “greater than 20 hours”. All programs covered laboratory aspects of hemoglobinopathy, outpatient care of sickle cell disease and inpatient care of sickle cell disease, and all but one program covered outpatient care of thalassemias. In 1/2 to 2/3 of adult training programs, these topics were covered at only a basic level. All pediatric programs covered outpatient and inpatient care of sickle cell disease “in-depth”, with 90% and 40% of programs covering outpatient thalassemia care and laboratory diagnostics “in-depth”, respectively. All 22 programs had academic half-days with teaching devoted to hemoglobinopathy. Seventy-seven percent of programs had faculty member(s) with an interest in hemoglobinopathy. The response rate for residents was 45% (70/156). The majority of respondents were senior residents, with 88% currently in post-graduate year five, or above. Among residents in adult hematology programs, 61% had completed a rotation or elective with a focus on hemoglobinopathy versus 25% in the pediatric programs. Total numbers of hemoglobinopathy patients seen ranged from “0” to “more than 50”, and laboratory exposure varied from “none” to “in-depth”. Most residents with clinical hemoglobinopathy experience had seen patients with both sickle cell disease and thalassemia major or intermedia. Of residents who responded, 83% felt that hemoglobinopathy knowledge was “important” or “very important” to their future practice. All TPDs and 90% of residents felt that online hemoglobinopathy learning modules could be beneficial for resident learning. There appears to be wide variability in depth and breadth of clinical and laboratory hemoglobinopathy learning in Hematology training programs across Canada. TPDs and residents place high importance on hemoglobinopathy learning, but some centres have small patient numbers, or lack faculty with interest in hemoglobinoapthies. Online learning modules could provide added learning opportunities for residents. Disclosures No relevant conflicts of interest to declare.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2014
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
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  • 2
    Online Resource
    Online Resource
    Elsevier BV ; 2012
    In:  The Lancet Vol. 380, No. 9850 ( 2012-10), p. 1305-1306
    In: The Lancet, Elsevier BV, Vol. 380, No. 9850 ( 2012-10), p. 1305-1306
    Type of Medium: Online Resource
    ISSN: 0140-6736
    RVK:
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2012
    detail.hit.zdb_id: 2067452-1
    detail.hit.zdb_id: 3306-6
    detail.hit.zdb_id: 1476593-7
    SSG: 5,21
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  • 3
    Online Resource
    Online Resource
    American Society of Hematology ; 2014
    In:  Blood Vol. 124, No. 21 ( 2014-12-06), p. 4851-4851
    In: Blood, American Society of Hematology, Vol. 124, No. 21 ( 2014-12-06), p. 4851-4851
    Abstract: Transition from pediatric to adult care is a well-recognized challenge for adolescents and young adults (AYA) with sickle cell disease (SCD) and thalassemia. Transition of care for AYAs is a multi-layered process, involving the patient, their family, and healthcare providers, with an end goal of ensuring that transition is as smooth as possible for all parties involved. In 2013, McMaster University launched a comprehensive care clinic for patients with SCD and thalassemia where a pediatric hematologist and an adult hematologist work side-by-side, along with a shared team of allied health care providers. One goal of this clinic is to facilitate fluid transition, by maintaining continuity in the patient’s medical care and providing a familiar environment for AYA patients. The aim of this study was to assess baseline level of understanding about transition from pediatric patients and their parents, expectations for transition, and recommendations for a smooth transition. In addition, opinions and experiences from young adult patients who had experienced transition of care under a variety of models were collected in order to identify key elements of how to optimally facilitate transition of care. After an informed consent process, 17 participants were interviewed regarding their, or their child’s, transition of care. Interviews were conducted with 5 pediatric patients, 5 parents, and 7 young adults. One-on-one semi-structured interviews were conducted with questions ranging from types of medical visits, knowledge of transition, experiences with transition, and recommendations. Saturation was reached and data was analyzed using an inductive-iterative approach. Eight SCD patients and 4 thalassemia major patients participated in the study. Themes that emerged included: apprehension from pediatric patients about leaving a supportive care environment; desire for a patient orientation with both their pediatric and adult specialists prior to transition; desire for a peer support group from pediatric patients, young adult patients and families; and need for a well established transition education piece for patients and families. Young adult patient experiences were diverse, as most had experienced SCD or thalassemia care at different hospitals. Patients who had transitioned in the McMaster clinic were pleased with the opportunity to participate in clinic visits attended jointly by their pediatric and adult hematologists prior to transition of care. Patients were appreciative of the continuous involvement of other clinic staff. The baseline responses obtained from this study can guide policies in a combined pediatric-adult model Hemoglobinopathy Clinic. Completing transition of care “under one roof” has potential to provide a uniquely supportive environment for AYA patients. An overlap in clinic staff for pediatric and adult patients can facilitate a strong patient rapport with a consistent set of healthcare providers, and can help to ensure consistency of care and collaboration between providers as patients transition through the AYA stages of life. Steps can be put in place to ensure that transition is as undisruptive as possible and to eliminate patients feeling uncertain about their care process. Disclosures No relevant conflicts of interest to declare.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2014
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
    Location Call Number Limitation Availability
    BibTip Others were also interested in ...
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