Developing a Sustainable Care Delivery Payment Model for Children With Medical Complexity.

Children with medical complexity (CMC) are a small but growing population representing <1% of all children while accounting for >30% of childhood health care expenditure. Complex care is a relatively new discipline that has emerged with goals of improving CMC care, optimizing CMC family function, and reducing health care costs. The provision of care coordination services is a major function of most complex care programs. Unfortunately, most complex care programs struggle to achieve financial sustainability in a predominately fee-for-service environment. The article describes how 2 programs in Wisconsin worked with their state Medicaid payer through a Centers for Medicare and Medicaid Services Health Care Innovation Award to develop a sustainable complex care payment model, and the value the payment model is currently bringing to stakeholders. Key elements of the process included: Developing a relationship between payer and clinicians that allowed for an understanding of each's viewpoint, use of an accepted clinical service model, and an effort to measure cost of care for the service provided supported by time-study methodology.

Partnering with Parents of Children with Medical Complexity: A Framework for Engaging Families for Practice Improvement.

The role of patients and families has evolved over the years, from being viewed as entities who were told what to do, to consumers of health services, to being central to health system design and clinical decision-making. When designing health care practices and programs to be patient- and family-centered, we believe that parents of children with medical complexity (CMC) bring valuable viewpoints and experiences to the table. Good health and functional outcomes for CMC and their families are dependent on active family engagement with their health care partners. We apply the Patient Engagement in Redesigning Care Toolkit (PERCT) model to describe the experience of complex care programs with engaging families at various levels of program design and function, including strengths and pitfalls experienced with each PERCT category. Operationalizing the health care system to treat patients and families as equal stakeholders is necessary if we want to succeed in a patient-centered, value-based environment. [Pediatr Ann. 2020;49(11):e467-e472.].

Transitioning adolescents and young adults with spina bifida to adult healthcare: initial findings from a model program.

PURPOSE: The Spina Bifida Transition Project (SBTP) was developed by partners from pediatric and adult health care settings using existing best practice information in an effort to transition adolescents to adult health care providers. The purpose of this manuscript is to present the results of an initial evaluation of the SBTP from the adolescent/young adult (AYA) and family perspective. DESIGN AND METHODS: Qualitative evaluation data were obtained from telephone interviews with 40 individuals (24 AYA and 16 parents representing 28 families) two-three weeks after initial adult clinic visits using a semi-structured interview guide. FINDINGS: Interview analysis yielded six overall themes: Positive experience, Developing Trust, Unexpected Benefits, Communication, Potential Worries, and Suggestions for Improvement. The study supported both the effectiveness of the SBTP as well as patient desire for earlier initiation of transition activities CONCLUSION AND CLINICAL RELEVANCE: SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.

Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program.

Pediatric specialists have successfully improved the longevity and quality of life of many children with chronic health conditions. As these children reach adolescence and young adulthood, the scope of their concomitant medical problems often include those typically seen in older patients. As a result, these individuals need continuing quality health care in focused adult healthcare facilities. This article describes the effective partnership between pediatric and adult healthcare providers to create and implement an exemplar Spina Bifida Transition Program. The processes, strategies and tools discussed are likely to be useful to other healthcare professionals interested in developing pediatric to adult transition programs for adolescents and young adults with chronic health conditions.

Evidence-based practice: perceptions, skills, and activities of pediatric health care professionals.

The purposes of this descriptive study were to evaluate pediatric professional staffs' perceptions of evidence-based practice (EBP), to identify individual and organizational barriers experienced when applying EBP into practice, and to determine differences in perceptions by those attending and not attending an EBP education series. A total of 486 pediatric health care professionals, 56 of whom attended all of the sessions, completed an anonymous online survey. Professional staff participated in and valued EBP activities but identified barriers to full implementation. Participants in the EBP series were significantly different in several positive ways. Implications for further education and research are delineated based on survey results.

A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs.

OBJECTIVE: To evaluate the impact of a tertiary care center special needs program that partners with families and primary care physicians to ensure seamless inpatient and outpatient care and assist in providing medical homes. DESIGN: Up to 3 years of preenrollment and postenrollment data were compared for patients in the special needs program from July 1, 2002, through June 30, 2005. SETTING: A tertiary care center pediatric hospital and medical school serving urban and rural patients. PARTICIPANTS: A total of 227 of 230 medically complex and fragile children and youth with special needs who had a wide range of chronic disorders and were enrolled in the special needs program. INTERVENTIONS: Care coordination provided by a special needs program pediatric nurse case manager with or without a special needs program physician. MAIN OUTCOME MEASURES: Preenrollment and postenrollment tertiary care center resource utilization, charges, and payments. RESULTS: A statistically significant decrease was found in the number of hospitalizations, number of hospital days, and tertiary care center charges and payments, and an increase was found in the use of outpatient services. Aggregate data revealed a decrease in hospital days from 7926 to 3831, an increase in clinic visits from 3150 to 5420, and a decrease in tertiary care center payments of $10.7 million. The special needs program budget for fiscal year 2005 had a deficit of $400,000. CONCLUSION: This tertiary care-primary care partnership model improved health care and reduced costs with relatively modest institutional support.