P1820THE DEVELOPMENT OF TRANSITION SERVICES IN RENAL CARE IN SYNERGY WITH YOUNG PATIENTS, PARENTS AND PEDIATRIC AND ADULT HEALTH CARE PROVIDERS: A CO-CREATION APPROACH

Abstract Background and Aims Healthcare transition to adulthood is recognised as challenging for adolescents and young adults (AYA’s) diagnosed with chronic kidney disease. Therefore the implementation of a transition programme adjusted to the needs of this patient population is of great importance. However, rarely are the views of young people or their families sought about the process or relevant outcome of their transition process. The aim of this study was to co-develop a transition programme that (1) enables health care providers to facilitate improving transition outcomes from the perspective of all stakeholders, and (2) enhances self-management by young people with chronic kidney disease. Method The development of this programme involved (1) an extensive review of currently existing best-practices (published and unpublished), and (2) understanding the current state of transition practice at our centre by means of semi-structured interviews and focus groups with patients, parents and health care providers of both pediatric and adult side. Results A working group was established incorporating a reflective process designed to develop a community of practice. During the process, participants’ experiences, lessons learned from the review of current state of evidence and practice, and appreciation of the (changing) context within which participants were working were incorporated. Analysis revealed 6 core elements as the foundation of the transition program: the AYA as the main focus, involvement of the parents, holistic approach, flexibility, forward-looking approach, continuity in guidance and follow-up. We also identified the need to distinguish the difference between transitioning from child to teenager to young adult and the actual transfer between paediatric and adult care. The actual final proposed transition programme can be divided in 4 phases: (1) introduction of the transition process to parents and patients, (2) guiding the patient to become more independent and to gain insight in the disease and related themes, (3) managing the transfer to adult health care and (4) finalizing the transition care plan. Adequate on-going communication and collaboration between paediatric and adult care seems essential for achieving a successful program. Conclusion This study addressed the development of a transition programme as a multi-actor process wherein patients, parents and health care providers significantly contribute to the transition to adulthood and transfer to adult care.

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Lost in Transition: Health Care Experiences of Adults Born Very Preterm—A Qualitative Approach

Frontiers in Public Health ◽

10.3389/fpubh.2020.605149 ◽

2020 ◽

Vol 8 ◽

Author(s):

Anna Perez ◽

Luise Thiede ◽

Daniel Lüdecke ◽

Chinedu Ulrich Ebenebe ◽

Olaf von dem Knesebeck ◽

...

Keyword(s):

Health Care ◽

Health Care Providers ◽

Health Care Services ◽

Adult Health ◽

Care Providers ◽

Very Preterm ◽

Care Services ◽

Health Care Satisfaction ◽

Care Satisfaction ◽

Adult Health Care

Introduction: Adults Born Very Preterm (ABP) are an underperceived but steadily increasing patient population. It has been shown that they face multiple physical, mental and emotional health problems as they age. Very little is known about their specific health care needs beyond childhood and adolescence. This article focuses on their personal perspectives: it explores how they feel embedded in established health care structures and points to health care-related barriers they face.Methods: We conducted 20 individual in-depth interviews with adults born preterm aged 20–54 years with a gestational age (GA) below 33 weeks at birth and birth weights ranging from 870–1,950 g. Qualitative content analysis of the narrative interview data was conducted to identify themes related to self-perceived health, health care satisfaction, and social well-being.Results: The majority (85%) of the study participants reported that their former prematurity is still of concern in their everyday lives as adults. The prevalence of self-reported physical (65%) and mental (45%) long-term sequelae of prematurity was high. Most participants expressed dissatisfaction with health care services regarding their former prematurity. Lack of consideration for their prematurity status by adult health care providers and the invisibility of the often subtle impairments they face were named as main barriers to receiving adequate health care. Age and burden of disease were important factors influencing participants' perception of their own health and their health care satisfaction. All participants expressed great interest in the provision of specialized, custom-tailored health-care services, taking the individual history of prematurity into account.Discussion: Adults born preterm are a patient population underperceived by the health care system. Longterm effects of very preterm birth, affecting various domains of life, may become a substantial burden of disease in a subgroup of formerly preterm individuals and should therefore be taken into consideration by adult health care providers.

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Caring for an Underserved Population: Helping Pediatric Patients With Disabilities Transition to Adulthood

Creative Nursing ◽

10.1891/1078-4535.14.2.66 ◽

2008 ◽

Vol 14 (2) ◽

pp. 66-69 ◽

Cited By ~ 1

Author(s):

Christine Milbrath

Keyword(s):

Transition To Adulthood ◽

Pediatric Patients ◽

Direct Care ◽

Pediatric Care ◽

Adult Health ◽

Care Providers ◽

Adult Care ◽

Care Community ◽

Service Gap ◽

Adult Health Care

Improving the processes to assist adolescent patients in their transition into the adult health care community reveals the challenges encountered by adults with disabilities. A service gap between pediatric care providers and adult care providers is bridged by a program providing direct care, education, and advocacy.

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Susceptibility to Varicella-Zoster Virus Among Adults at High Risk for Exposure

Infection Control ◽

10.1017/s0195941700064936 ◽

1986 ◽

Vol 7 (9) ◽

pp. 448-451 ◽

Cited By ~ 28

Author(s):

Sherman J. Alter ◽

Jeanne A. Hammond ◽

Carol J. McVey ◽

Martin G. Myers

Keyword(s):

Health Care ◽

Varicella Zoster Virus ◽

Health Care Providers ◽

Total Population ◽

Prior Experience ◽

Adult Health ◽

Care Providers ◽

Varicella Zoster ◽

Hospital Employees ◽

Adult Health Care

AbstractThe adult health care provider who is susceptible to varicella zoster virus (VZV) represents a risk to her or himself and to patients. Nineteen percent of employees at this Children's Hospital had no or uncertain prior experience with VZV, and of these, 28% were found to be VZV susceptible, representing 5% of the total population of 2,730 hospital employees. During the 12 months of study, six of the potential 135 to 137 VZV-susceptible individuals acquired varicella. VZV-susceptible health care providers should be aware of their potential to both acquire and transmit VZV.

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Therapeutic Pitfalls in the Transition of Neurologic Patients from Pediatric to Adult Health Care Providers

Neurologic Clinics ◽

10.1016/j.ncl.2020.09.015 ◽

2021 ◽

Vol 39 (1) ◽

pp. 243-256

Author(s):

Eugene R. Schnitzler ◽

Michael J. Schneck

Keyword(s):

Health Care ◽

Health Care Providers ◽

Adult Health ◽

Care Providers ◽

Adult Health Care

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Transitions in Care from Pediatric to Adult Health Care Providers: Ongoing Challenges and Opportunities for Young Persons with Diabetes

Transition of Care - Endocrine Development ◽

10.1159/000487866 ◽

2018 ◽

pp. 68-81 ◽

Cited By ~ 3

Author(s):

Katharine Garvey ◽

Lori Laffel

Keyword(s):

Health Care ◽

Health Care Providers ◽

Adult Health ◽

Care Providers ◽

Transitions In Care ◽

Challenges And Opportunities ◽

Adult Health Care

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Best Practices to Promote Patient and Donor Engagement to Care in Living Donor Transplant

Health Literacy ◽

10.4018/978-1-5225-1928-7.ch015 ◽

2017 ◽

pp. 306-327

Author(s):

Emanuela Saita ◽

Susanna Zanini ◽

Enrico Minetti ◽

Chiara Acquati

Keyword(s):

Health Care ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Best Practices ◽

Health Care Providers ◽

Living Donor ◽

Care Providers ◽

Health Care Outcomes ◽

Care Outcomes ◽

Donor Kidney Transplantation

Increasing evidence has demonstrated that patients' involvement promotes better health care outcomes and cost-effectiveness of services. However, limited literature is available about the experience of living donor kidney transplantation and best practices to promote patients and donors' engagement. Aim of the present chapter is to review the literature about patient engagement in the context of chronic kidney disease, and to introduce an innovative protocol developed to promote potential donors and recipients' participation and adherence to care at the Niguarda Ca' Granda Hospital in Milan (Italy). Results are critical to reflect on the identification of best practices for patients' engagement in the context of chronic kidney disease. Through a better understanding of the emotional and affective dynamics and the relational implications that may influence the elaboration of the information given by health care providers, it will be possible to develop evidence-informed interventions.

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Best Practices to Promote Patient and Donor Engagement to Care in Living Donor Transplant

Transformative Healthcare Practice through Patient Engagement - Advances in Medical Diagnosis, Treatment, and Care ◽

10.4018/978-1-5225-0663-8.ch001 ◽

2017 ◽

pp. 1-28

Author(s):

Emanuela Saita ◽

Susanna Zanini ◽

Enrico Minetti ◽

Chiara Acquati

Keyword(s):

Health Care ◽

Chronic Kidney Disease ◽

Kidney Disease ◽

Best Practices ◽

Health Care Providers ◽

Living Donor ◽

Care Providers ◽

Health Care Outcomes ◽

Care Outcomes ◽

Donor Kidney Transplantation

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Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home

Autism ◽

10.1177/1362361320974491 ◽

2020 ◽

pp. 136236132097449

Author(s):

Jill F Harris ◽

Leigh P Gorman ◽

Aditi Doshi ◽

Shannon Swope ◽

Shayleigh D Page

Keyword(s):

Health Care ◽

Autism Spectrum Disorder ◽

Health Care Provider ◽

Care Provider ◽

Transition Process ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Adult Health ◽

Medical Providers ◽

Adult Health Care

Transition from pediatric to adult health care systems presents unique challenges for adolescents with autism spectrum disorder who often have complex medical and mental health needs. Without a coordinated transition plan, pediatric providers often continue to provide care to young adults with autism spectrum disorder beyond the scope of their medical training. Adult providers may be unwilling and untrained to accept care for young adults with autism spectrum disorder. This quality improvement study identified baseline transition-related practices within a pediatric medical home practice and developed a model to promote transition to adult heath care for patients with autism spectrum disorder. Participants were 251 patients with autism spectrum disorder aged 12–21 years. Baseline data revealed limited and inconsistent communication directed to patients and families regarding transition. An evidence-based and replicable transition checklist, templated documentation, and resources geared to patients aged 12–21 years were developed. While improvement was noted in number of visits addressing transition, medical providers skipped or deferred transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to defer to social work to address transition, and difficulty identifying adult providers with whom to collaborate regarding care needs. Lay abstract As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.

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Teaching Adolescents to Manage Their Own Health Care

The Journal of School Nursing ◽

10.1177/1059840519867363 ◽

2019 ◽

pp. 105984051986736

Author(s):

Chelsea J. Aeschbach ◽

William B. Burrough ◽

Amy B. Olejniczak ◽

Erica R. Koepsel

Keyword(s):

Health Care ◽

High School Students ◽

Health Care Providers ◽

Health Care Services ◽

Transition Process ◽

Care Transition ◽

Care Providers ◽

School Students ◽

Health Care Transition ◽

Care Services

Many factors impact an adolescent’s willingness to appropriately use health-care services and intent to begin the health-care transition process. Published literature continues to show that the way adolescents experience and utilize health-care services is ineffective and has long-term impacts on individuals and systems. Building upon the success of an existing peer-to-peer workshop, a Toolkit was created to provide school-based health professionals the information and resources needed to deliver pertinent information to high school students in one lesson. Of 416 students, over two thirds reported that they plan to be more involved in their health care (69.8%), advocate for themselves in health-care settings (68.0%), talk openly and honestly with health-care providers (71.9%), and learn more about managing their own health care (68.6%). Integrating this information into existing health curricula provided a broader reach with minimal work and promising results that could improve overall health-care transition efforts.

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