Improving Sickle Cell Transitions of Care Through Health Information Technology

Frost, Jennifer R.; Cherry, Rebecca K.; Oyeku, Suzette O.; Faro, Elissa Z.; Crosby, Lori E.; Britto, Maria T.; Tuchman, Lisa; Horn, Ivor B.; Homer, Charles J.; Jain, Anjali

doi:10.1016/j.amepre.2016.02.004

Cited by 24 publications

(20 citation statements)

References 25 publications

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“…A recent study developed in the United States reaffirmed the importance of family members being present in patient care, during all stages of life relative to sickle cell disease, from childhood, youth to the transition to adulthood. In addition, he pointed out that these people have also used virtual technologies to search for data on the symptoms of this disease, among other information, which worries health professionals because they consider inaccurate data shared on the internet (24) .…”

Section: Discussionmentioning

confidence: 99%

Importance of health guidance for family members of children with sickle cell disease

et al. 2018

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Objective: To know the main health guidance needs of family members of children with sickle cell disease. Method: Qualitative research, developed in a pediatric reference hospital of Ceará State, between April and May 2017, through the participation of 12 family members of children with sickle cell disease. The data were collected through semi-structured interviewees and analyzed according to the Bardin’s Thematic Categorical Analysis. Results: The relatives had divergent opinions about what this pathology would be and expressed the expectation of being broadly guided, from general information (signs and symptoms) to more complex ones about the disease, including major complications and ways of preventing them. Final considerations: The health fragility due to the punctual and/or meager guidance provided to family members reflects the importance of increasing knowledge and clarifying doubts of these relatives about the disease, which makes it urgent to develop health education strategies by multiprofessional teams.

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Section: Discussionmentioning

confidence: 99%

Importance of health guidance for family members of children with sickle cell disease

et al. 2018

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“…For aging survivors, delivery of care is complicated by the need to transition not only from treatment to survivorship and/or primary care but also from pediatric to adult providers. The importance of an effective transition of care has been recognized and is under active investigation in other pediatric chronic conditions, such as sickle cell and congenital heart disease . Within general pediatrics, some have suggested that beginning the process early, engaging the child in medical decision making, and maintaining health insurance are important factors in this transition .…”

Section: Screening Guidelines and Delivery Of Carementioning

confidence: 99%

Factors influencing risk‐based care of the childhood cancer survivor in the 21st century

Dixon

Bjornard

Alberts

et al. 2018

CA A Cancer J Clinicians

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The population of adult survivors of childhood cancer continues to grow as survival rates improve. Although it is well established that these survivors experience various complications and comorbidities related to their malignancy and treatment, this risk is modified by many factors that are not directly linked to their cancer history. Research evaluating the influence of patient-specific demographic and genetic factors, premorbid and comorbid conditions, health behaviors, and aging has identified additional risk factors that influence cancer treatment-related toxicity and possible targets for intervention in this population. Furthermore, although current long-term follow-up guidelines comprehensively address specific therapyrelated risks and provide screening recommendations, the risk profile of the population continues to evolve with ongoing modification of treatment strategies and the emergence of novel therapeutics. To address the multifactorial modifiers of cancer treatment-related health risk and evolving treatment approaches, a patient-centered and risk-adapted approach to care that often requires a multidisciplinary team approach, including medical and behavioral providers, is necessary for this population. CA Cancer J Clin 2018;68:133-152.

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“…To that end, this paper sets out to understand the knowledge creation practices in the care of sickle cell disorder, which remains one of the most neglected genetic disorder having severe implications for maternal, newborn and child health in native communities globally (McGann et al, 2016;Singh et al, 2019;Ware, 2013). Health care systems, which provide care for sickle cell disorder in developed economies, have emphasized the role of information and communication technology (ICT) based practices for an effective transition between different care services within the hospital premise (Frost et al, 2016). However, in emerging economies, this disorder continues to prevail among the marginal communities where institutional provisions of care remain constrained due to socio-economic, cultural and clinical factors (High-Level Committee Report, 2014).…”

Section: Introductionmentioning

confidence: 99%

Knowledge creation practices at organizational boundaries: the role of ICT in sickle-cell care for tribal communities

Tripathi

Popli

Ghulyani

et al. 2020

JKM

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Purpose This paper aims to examine the role of information and communication technology (ICT) in the knowledge creation practices adopted by a health care organization. The organization is delivering care to patients of a genetic disorder, called the sickle cell, in tribal communities. The paper identifies how ICT intermediates knowledge creation practices across the organizational boundaries wherein tribal patients, front-line counselors and expert physicians interact, which then produces context-specific, evidence-based medicine (EBM). Design/methodology/approach The knowledge-in-practice approach is adopted to conduct an ethnographic study of sickle cell care practices in a non-profit health care organization in Western India. The analysis focuses on ICT-mediated interactional practices among the physicians, front-line counselors, tribal patients and their families, for more than a year-long observation. These are supplemented with informal and formal interviews, archival records and vignettes based on several episodes to explicate the key knowledge creation practices. Findings Technology-mediated informative interactions at organizational boundaries can bridge socio-linguistic and interpretive barriers between actors, while also providing a generative structure that leads to the creation of longitudinal clinical evidence about a rare genetic disorder. Three specific ICT-entwined knowledge creation practices emerge, namely, knowing the community, increasing interactional engagement and constructing gradients of socio-clinical history. These practices generate organization-wide knowledge about the social and clinical dimensions of the genetic disorder. The findings are presented through vignettes and a novel conceptual framework. Research limitations/implications This study identifies various useful knowledge creation practices in health care delivery for resource-constrained emerging economy contexts. Further, the study suggests that the involvement of local front-line actors and ICT can become important resources in the delivery of health care in these settings. Originality/value A novel framework is developed which demonstrates knowledge creation at organizational boundaries wherein the actors use ICT-based practices for effective delivery of health care. The proposed framework may be used by health care organizations in similar contexts providing care to marginalized communities.

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Improving Sickle Cell Transitions of Care Through Health Information Technology

Abstract: The environmental scan did not reveal an existing suitable transition tool, but patients, parents, providers, and IT experts saw the potential and appeal of creating a tool to meet ED health information needs to improve care transitions.

Cited by 24 publications

References 25 publications

Importance of health guidance for family members of children with sickle cell disease

Importance of health guidance for family members of children with sickle cell disease

Factors influencing risk‐based care of the childhood cancer survivor in the 21st century

Knowledge creation practices at organizational boundaries: the role of ICT in sickle-cell care for tribal communities

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