Health care transition for adolescents with special healthcare needs: Where is nursing?

doi:10.1016/j.outlook.2012.08.009

Nursing Outlook

Volume 61, Issue 5, September–October 2013, Pages 258-265

https://doi.org/10.1016/j.outlook.2012.08.009 Get rights and content

Abstract

The population of adolescents with special healthcare needs (ASHCN) surviving into adulthood has increased dramatically over the past two decades. Approximately, nine of every 10 children diagnosed with a chronic condition are expected to reach adulthood. Experts estimate nearly 750,000 ASHCN enter into adulthood each year. Advances in medical treatments, new technologies and scientific discoveries have all contributed to the increases in ASHCN life expectancies. As a result, new demands for services have emerged to address their clear needs for long-term services and supports. Foremost among the ASHCN service needs are healthcare transition services. Healthcare transition is recognized as a needed area of practice to facilitate ASHCN transfer of care from pediatric to adult healthcare and to support the acquisition of the developmental competencies needed to successfully transition to adulthood. Yet, few evidence-based and exemplary models of care exist. Healthcare transition research is in the early stages of development. The medical community has provided the leadership with the development of healthcare transition policy, practice, and research. As a result, policymaking, practice issues, and research have a prominent medically related focus. In contrast, the influence of nursing as it pertains to these areas of professional practice is limited. Opportunities exist for pediatric and child health nursing leaders to provide direction for greater involvement in this emerging and growing field of specialty practice.

Section snippets

Early Developments

The concept of healthcare transition originated nearly two decades ago as a proposed service enhancement for the first generation of ASHCN. Their life expectancies exceeded previous generations of those born with childhood chronic conditions for whom life-sustaining treatments did not exist. Conceiving what had been the inconceivable was a challenge as survivorship had been a prognostic hope, not yet a reality. The capacity of the child healthcare system was ill equipped and not yet prepared to

Recommendations

The position statements on the scope of healthcare transition practice that are predicated upon an interdisciplinary framework of care would be strengthened by more accurately reflecting the service alignment and involvement of interdisciplinary team members. Of note, none of the position statements issued by AAP, SAM, or the consensus groups included representatives from pediatric nursing or other interdisciplinary organizations. In two instances, recognized nursing experts were invited to

Service Model Characteristics

Healthcare transition, although recognized as a salient service component for ASHCN over the past two decades, remains a field of practice and research that is seeking direction. Researchers and clinical experts are exploring ways to develop and implement healthcare transition services that will facilitate ASHCN acquisition of goals for the future, including becoming competent managers of their own care and becoming consumers of health services.

Evidence-based approaches to provide healthcare

Conclusion

Healthcare transition, although acknowledged as a service need for the past two decades, has yet to become a service reality. Few exemplary and evidence-based models of healthcare transition exist that have been sustained with revenue generated from the services provided. The body of research to inform practitioners of evidence-based practices is scant.

As discussed in this paper, the field of healthcare transition has been largely influenced by the medical community. The medical community has

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To identify current medical and psychosocial needs and to examine the effectiveness of healthcare transition program for adult-aged patients with neuromuscular conditions transitioning from pediatric to adult services.
At Neuromuscular Transition Clinic visit, 46 patients were evaluated and referred to adult-based providers, if did not currently have one, from an acquired list of interested clinicians. At mean follow-up of 22 months, 42 were interviewed by phone regarding referrals for Core Services (primary care, physiatry, dental care and gynecology), Medical Specialties and Rehabilitation Services. Mean age was 30 years with 62% males. Majority (74%) had cerebral palsy. Sixty percent were non-ambulatory.
As per protocol, all were indicated to need Core Services. Eighty-three percent already had adult primary care provider. Most referrals were given for physiatry (62%), vocational training (100%), and occupational therapy (88%). At follow-up, visits were completed most frequently with adult provider for primary care (100%), occupational therapy (78%), and neurology (75%). Referred provider was seen 100% for physiatry, neurology, physical therapy, occupational therapy and vocational training. Of the total 125 referrals given across all services, 73 (58%) participants had completed a visit with an adult provider.
As only about 60% transitioned to adult-based services after referral, healthcare transition remains challenging and requires tailoring of services according to patients' needs, staff and willing-and-available adult-based providers.
Transitioning healthcare of patients with neuromuscular conditions from pediatric- to adult-based providers remains challenging. This clinical specialty requires tailoring of services based on patient's needs, and availability of adult-based providers and resources.
Improving Health Care Transitions for Children and Youth With Special Health Care Needs
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Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care.
The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were “What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?” and “How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?”. Based upon these priorities, we describe the current state of transition research and recommendations for future investigation.
Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.
Utilization of health services among adults with autism spectrum disorders: Stakeholders’ experiences
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Citation Excerpt :
These gaps may include coordinating care between neurodevelopmental teams, communication between pediatric and adult providers for both physical and mental health, and preparing families to receive adult care (Ghanouni & Seaker, 2021; Kuhlthau et al., 2014). A disruption in the continuity of care and lack of access to integrated care might affect the health outcomes of individuals with ASD (Betz, 2013). Although there might be variations in the extent of required services for each individual due to heterogeneity in ASD and neurodiversity (Howlin, Goode, Hutton, & Rutter, 2004; Wakefield, Wasserman, & Conrad, 2020), parents of adults with ASD reported concerns about their young adult’s future independence and availability of healthcare services (Lake et al., 2014).
Autism spectrum disorder (ASD) is a lifelong disorder, beginning in early childhood, which often accompanies with several healthcare challenges. There is a need for consistent and continued healthcare services throughout the life of an individual with ASD. The majority of previous studies have examined healthcare services in children with ASD and there is limited evidence about healthcare needs of adults with ASD.
The aim of this project was to capture the experiences of stakeholders including adults with ASD in receiving healthcare services.
We interviewed 22 stakeholders, including adults with ASD (n = 13), parents of adults with ASD (n = 5), and service providers (n = 4). Open-ended questions were used to explore their experiences with the healthcare system. We analysed the data thematically to develop the overarching themes.
Three themes emerged from interviews including a) availability and accessibility of healthcare services, b) provision of quality healthcare and service delivery, and c) striving for better health outcomes.
This study found that many adults with ASD can experience a continued lack of access to services and the care they receive is often of limited quality. The unmet healthcare needs lead stakeholders to feel stress, frustration, exhaustion, and possible burnout. The detrimental cost of limited services not only impacts adults with ASD but also their caregivers.
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To provide a summary of the emerging and ongoing survivorship challenges facing childhood, adolescent, and young adult cancer survivors and their families.
Research and review articles, websites, and clinical guidelines specific to childhood cancer survivorship were used.
Many challenges exist in assuring quality long-term follow-up and risk-based screening for childhood cancer survivors. Although many childhood cancer survivors survive well into adulthood, they are at risk for a vast number of later complications of their cancer treatment necessitating annual cancer surveillance. In addition, many childhood cancer survivors are not engaging in long-term follow-up recommendations for clinic attendance, risk-based surveillance, and screening for potentially life-ending events. Pediatric oncology nurses and advanced practice nurses have played an enormous role in the design of childhood cancer survivorship programs and are an integral member of the multidisciplinary health care team who care for this population. Nurses have an obligation to continue to advance the survivorship care of childhood cancer survivors and lead interventional opportunities to improve the lifelong health-related quality of life and overall physical health.
Pediatric oncology nurses and advanced practice registered nurses must have a working knowledge of the many late effects that childhood cancer treatment has on the long-term health of childhood cancer survivors. Nurses are well-placed in positions to continue the efforts begun more than 2 decades prior by pediatric oncology nurses who saw the value and necessity of designated survivorship programs.
Factors for Assisting Adolescents with Autism Develop Health Self-Management
2021, Journal for Nurse Practitioners
Although nurses provide much of the health care for adolescents with special health needs, the nursing literature has focused limited attention on these adolescents’ health transitions, particularly in adolescents with autism spectrum disorder (ASD). As many as 95% of individuals with ASD have co-occurring health conditions. Despite their need to develop health self-management skills as they transition to adulthood, only 14% of adolescents with ASD receive health transition planning. One barrier to such planning is a limited understanding of concepts and relationships within health care transitions. We propose a model for adolescent health self-management to guide researchers, nurses, other health care professionals, and policy makers in facilitating this transition.

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ArticleSpecial Focus on Child HealthHealth care transition for adolescents with special healthcare needs: Where is nursing?

Abstract

Section snippets

Early Developments

Recommendations

Service Model Characteristics

Conclusion

Seizure

Pediatric Clinics of North America

Lancet (North American Edition)

Journal of Pediatric Nursing

Journal of Pediatric Nursing

Archives of Physical Medicine & Rehabilitation

Journal of Adolescent Health

Gastroénterologie Clinicque et Biolgique

Journal of the American College of Cardiology

Journal of Adolescent Health

Academic Pediatrics

Journal of Adolescent Health

Journal of Pediatric Nursing

American Society of Pediatric Nephrology Position Paper on Linking Reimbursement to Quality of Care

Journal of the American Society of Nephrology

Transition of care provided for adolescent with special health care needs

Pediatrics

Age Limits of Pediatrics

Pediatrics

Clinical report: Supporting the health care transition from adolescence to adulhood in the medical home

Pediatrics

A consensus statement on health care transitions for young adults with special health care needs

Pediatrics

Australia’s health 2010. Australia’s Health Series No. 12. Cat. no. AUS 122

Adolescent transitions: A nursing concern

Pediatric Nursing

Promoting health care transition planning for adolescents with special health care needs and disabilities

Transition service coordinator: A new role for advanced practice nurses

Journal of Specialized Pediatric Nursing

Creating healthy futures: An innovative nurse-managed transition clinic for adolescents and young adults with special health care needs

Pediatric Nursing

Lessons learned from providing transition services to adolescents with special health care needs

Issues in Comprehensive Pediatric Nursing

Testing the transition preparation training program: A randomized controlled trial

International Journal of Child and Adolescent Health

Measuring health care transition planning outcomes: Challenges and issues

International Journal of Child and Adolescent Health

Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care

Pediatrics

Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views

Pediatric Pulmonology

Medical home and transition planning for children and youth with special health care needs

Pediatric Clinics of North America

Article
Special Focus on Child Health
Health care transition for adolescents with special healthcare needs: Where is nursing?