Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease

Speller‐Brown, Barbara; Kelly, Katherine Patterson; VanGraafeiland, Brigit; Feetham, Suzanne; Sill, Anne; Darbari, Deepika S.; Meier, Emily Riehm

doi:10.1016/j.pedn.2015.06.008

Cited by 35 publications

(36 citation statements)

References 38 publications

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“…Barriers include inadequate and delayed planning for transfer and transition; lack of formalized guidelines to direct provision of health care transition services including a written transition plan and portable medical summary; and insufficient health care transition resource materials. Other barriers identified include shortages of available adult providers, lack of providers' HCT knowledge about the planning process and transition and adult community-based resources; and lack of an identified person responsible for transition planning (Fegran, Hall, Uhrenfeldt, Aagaard, & Ludvigsen, 2014;Joly, 2015;National Med-Peds Residents' Association, 2013;Nehring, Betz, & Lobo, 2015;Reiss, Gibson, & Walker, 2005;Schultz, 2013;Speller-Brown et al, 2015;Young et al, 2009).…”

Section: Rationale and Supporting Informationmentioning

confidence: 99%

“…There are several assessment tools available that can be used to measurewhat has been referred to as transition readiness. The plan is expected to be fluid and responsive to the needs of the adolescent and emerging adult based upon continuous assessment of needs and readiness (AAP et al, 2011;Celona, 2015;Disabato, Cook, Hutton, Dinkel, & Levisohn, 2015;Ferris et al, 2015;Fredericks et al, 2010;Moynihan, Saewyc, Whitehouse, Paone, & McPherson, 2015;Speller-Brown et al, 2015;Uzark et al, 2015;Wood et al, 2014). 5.…”

Section: Extended Hct Preparationmentioning

confidence: 99%

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SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Betz

2017

Journal of Pediatric Nursing

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SPN leadership has been active in organizing various task forces composed of members with recognized expertise and interest to work together and produce quality documents that provide guidance to the practice of pediatric nursing. The most recently published position paper follows this introduction and was produced by a team chaired by Cecily L. Betz PhD, RN, FAAN. These activities demonstrate fulfillment of SPN's Mission, Vision and Core Values, which are: Mission The mission of the Society of Pediatric Nurses is to advance the specialty of pediatric nursing through excellence in education, research and practice. Vision To be the premier resource for nurses caring for children and their families. Core Values Commitment Accountability to members and to decision making that contributes to the profession of pediatric nursing; dedication to lifelong learning, generation of new knowledge and scholarship, innovation, and advocacy for exceptional pediatric nursing care of children and families. Integrity Respectful, ethical, transparent, and fiscally responsible. Consistent expectations of collaboration and alignment of intellectual, professional, and organizational values. Leadership Visionary, leading with one voice, seeking diversity of thought, inspiring and advancing the leader qualities and strengths of the membership. Excellence Development and dissemination of evidence based standards and research based knowledge that transcends into exceptional quality outcomes for the nursing care of children and families and the promotion of the specialty of pediatric nursing.

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Section: Rationale and Supporting Informationmentioning

confidence: 99%

Section: Extended Hct Preparationmentioning

confidence: 99%

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Betz

2017

Journal of Pediatric Nursing

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“…AYAs with SCD around the time of transition have increased emergency department utilization for acute complications, increased readmission rate, and increased mortality (4,10,102). In addition to novel and curative therapies, quality improvement and clinical trials should be focused on assessing transition readiness and improving AYA transition to the adult care system as well as best ways to partner with adult providers to decrease patient and family anxiety about leaving pediatric practices, financial and insurance burdens of chronic diseases, and improving AYA responsibility for their own healthcare (103)(104)(105).…”

Section: Transition From Pediatric To Adult Care Systemsmentioning

confidence: 99%

Pediatric sickle cell disease: past successes and future challenges

Meier

Rampersad

2016

Pediatr Res

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Once a fatal disease of childhood, more than 95% of patients born today with sickle cell disease (SCD) in developed countries are expected to survive into adulthood, largely because of improvements in supportive and preventive care (newborn screening, penicillin prophylaxis, transcranial Doppler (TCD) screening). Hydroxyurea (HU) therapy, the only oral medication currently available to prevent SCD complications, has become more widespread over the past 20 y. The NHLBI recommends that HU be offered to all patients with HbSS beginning at 9 mo of age, and the recently published Abnormal TCD with Transfusions Changing to HU (TWiTCH) trial has shown HU as an acceptable alternative to transfusion therapy for patients at high risk of stroke. While hematopoietic stem cell transplant (HSCT) is a curative option for SCD, less than 25% of patients have a suitable donor. Alternative stem cell sources from unrelated donors and haplo-identical donors are currently under investigation as are gene therapy trials. This review will focus on early efforts to elucidate SCD pathophysiology as well as supportive and preventive care improvements. Findings from recent multi-center studies (Silent Infarct Transfusion (SIT) Trial and TWiTCH) will be summarized. Finally, HSCT trials and gene therapy will be reviewed.

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“…However, parent involvement was negatively correlated with the perspectives of an individual with SCD in the study. Therefore, for the better transition process, the responsibility of individuals with SCD should be increased while reducing parent involvement in transitions from pediatric to adults (30). Furthermore, another study (n=65) was conducted to investigate how healthy siblings of individuals with SCD cope psychosocially with SCD-related health and family functioning.…”

Section: Perspectives Of Caregiversmentioning

confidence: 99%

Health Care Transitions for Children with Sickle Cell Disease: Interventions, Perspectives of Health Care Providers and Caregivers

Ibrahim¹,

Yau²,

Haque³

2020

Istanbul Med J

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the opportunities of those SCD patients in education, societal roles, career options, and quality of life (QoL) (2). Globally, SCD affects approximately 300.000 newborn babies each year. The traits of SCD have been postulated to confer resistance against malaria, especially among the heterozygous carriers, leading to a higher prevalence in malaria-endemic areas due to selection pressure that promotes SCT for survival (1,3-5). The prevalence and impacts of SCD vary across different parts of the world, with the highest percentage (40%)

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Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease

Cited by 35 publications

References 38 publications

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Pediatric sickle cell disease: past successes and future challenges

Health Care Transitions for Children with Sickle Cell Disease: Interventions, Perspectives of Health Care Providers and Caregivers

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