Research

1395 KiB

Open AccessCommunication

Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

by Rhonda G. Cady and John L. Belew

Children 2017, 4(6), 45; https://0-doi-org.brum.beds.ac.uk/10.3390/children4060045 - 06 Jun 2017

Cited by 46 | Viewed by 7223

The overarching goal of care coordination is communication and co-management across settings. Children with medical complexity require care from multiple services and providers, and the many benefits of care coordination on health and patient experience outcomes have been documented. Despite these findings, parents [...] Read more.

The overarching goal of care coordination is communication and co-management across settings. Children with medical complexity require care from multiple services and providers, and the many benefits of care coordination on health and patient experience outcomes have been documented. Despite these findings, parents still report their greatest challenge is communication gaps. When this occurs, parents assume responsibility for aggregating and sharing health information across providers and settings. A new primary-specialty care coordination partnership model for children with medical complexity works to address these challenges and bridge communication gaps. During the first year of the new partnership, parents participated in focus groups to better understand how they perceive communication and collaboration between the providers and services delivering care for their medically complex child. Our findings from these sessions reflect the current literature and highlight additional challenges of rural families, as seen from the perspective of the parents. We found that parents appreciate when professional care coordination is provided, but this is often the exception and not the norm. Additionally, parents feel that the local health system’s inability to care for their medically complex child results in unnecessary trips to urban-based specialty care. These gaps require a system-level approach to care coordination and, consequently, new paradigms for delivery are urgently needed. Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

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579 KiB

Open AccessArticle

Genetic Testing among Children in a Complex Care Program

by Krista Oei, Robin Z. Hayeems, Wendy J. Ungar, Ronald D. Cohn and Eyal Cohen

Children 2017, 4(5), 42; https://0-doi-org.brum.beds.ac.uk/10.3390/children4050042 - 22 May 2017

Cited by 16 | Viewed by 4575

Abstract

Little is known about the pattern of genetic testing and frequency of genetic diagnoses among children enrolled in structured complex care programs (CCPs). Such information may inform the suitability of emerging genome diagnostics for this population. The objectives were to describe the proportion [...] Read more.

Little is known about the pattern of genetic testing and frequency of genetic diagnoses among children enrolled in structured complex care programs (CCPs). Such information may inform the suitability of emerging genome diagnostics for this population. The objectives were to describe the proportion of children with undiagnosed genetic conditions despite genetic testing and measure the testing period, types and costs of genetic tests used. A retrospective analysis of 420 children enrolled in Toronto’s Hospital for Sick Children’s CCP from January 2010 until June 2014 was conducted. Among those who underwent genetic testing (n = 319; 76%), a random sample of 20% (n = 63) was further analyzed. A genetic diagnosis was confirmed in 48% of those who underwent testing. Those with no genetic diagnosis underwent significantly more genetic tests than those with a confirmed genetic diagnosis [median interquartile range (IQR): six tests (4–9) vs. three tests (2–4), p = 0.002], more sequence-level tests and a longer, more expensive testing period than those with a genetic diagnosis [median (IQR): length of testing period: 4.12 years (1.73–8.42) vs. 0.35 years (0.12–3.04), p < 0.001; genetic testing costs C$8496 ($4399–$12,480) vs. C$2614 ($1605–$4080), p < 0.001]. A genetic diagnosis was not established for 52% of children. Integrating genome-wide sequencing into clinical care may improve diagnostic efficiency and yield in this population. Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

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163 KiB

Open AccessArticle

An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA)

by Deborah S. Boroughs

Children 2017, 4(5), 33; https://0-doi-org.brum.beds.ac.uk/10.3390/children4050033 - 29 Apr 2017

Cited by 15 | Viewed by 6171

Abstract

Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as [...] Read more.

Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as children with increasingly complex healthcare needs are now often cared for by family members. One of the most complex care conditions involves ventilator and tracheostomy support. Advanced respiratory technologies that augment natural respiratory function prolong the lives of children with respiratory compromise; however, this care often comes with serious risks, including respiratory muscle impairment, respiratory failure, and chronic pulmonary disease. Both non-invasive assisted ventilation and assisted ventilation via tracheostomy can prolong survival into adulthood in many cases; however, mechanical ventilation in the home is a high-stakes, high risk intervention. Increasing complexity of care over time requires perpetual skill training of family caregivers that is delivered and supported by professional caregivers; yet, opportunities for additional training outside of the hospital rarely exist. Recent data has confirmed that repetitive caregiver education is essential for retention of memory and skills in adult learners. This study analyzes the use of continued education and training in the community for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA). Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

Review

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266 KiB

Open AccessReview

Respiratory Care Considerations for Children with Medical Complexity

by Jackie Chiang and Reshma Amin

Children 2017, 4(5), 41; https://0-doi-org.brum.beds.ac.uk/10.3390/children4050041 - 19 May 2017

Cited by 22 | Viewed by 6385

Abstract

Children with medical complexity (CMC) are a growing population of diagnostically heterogeneous children characterized by chronic conditions affecting multiple organ systems, the use of medical technology at home as well as intensive healthcare service utilization. Many of these children will experience either a [...] Read more.

Children with medical complexity (CMC) are a growing population of diagnostically heterogeneous children characterized by chronic conditions affecting multiple organ systems, the use of medical technology at home as well as intensive healthcare service utilization. Many of these children will experience either a respiratory-related complication and/or they will become established on respiratory technology at home during their care trajectory. Therefore, healthcare providers need to be familiar with the respiratory related complications commonly experienced by CMC as well as the indications, technical and safety considerations and potential complications that may arise when caring for CMC using respiratory technology at home. This review will outline the most common respiratory disease manifestations experienced by CMC, and discuss various respiratory-related treatment options that can be considered, including tracheostomy, invasive and non-invasive ventilation, as well as airway clearance techniques. The caregiver requirements associated with caring for CMC using respiratory technology at home will also be reviewed. Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

157 KiB

Open AccessReview

After the Visit: An Overview of Government and Community Programs Supporting Children with Medical Complexity

by Kaitlyn B. Olson

Children 2017, 4(5), 35; https://0-doi-org.brum.beds.ac.uk/10.3390/children4050035 - 04 May 2017

Cited by 4 | Viewed by 5441

Abstract

The optimal care of children with medical complexity (CMC) requires involvement from a network of professionals that includes physicians, nurses, ancillary service providers, and educators. Pediatric health care providers typically have early and frequent contact with the families of CMC. Therefore, they are [...] Read more.

The optimal care of children with medical complexity (CMC) requires involvement from a network of professionals that includes physicians, nurses, ancillary service providers, and educators. Pediatric health care providers typically have early and frequent contact with the families of CMC. Therefore, they are in a unique position to connect families to developmental, educational, and psychosocial supports. This article reviews important government and community programs that support CMC living in the United States. It outlines the educational rights of children with disabilities and offers practical tips for collaborating with Early Intervention and the public school system. The article also provides an overview of financial assistance programs, respite care services, and support groups that are beneficial to CMC and their families. Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

10224 KiB

Open AccessReview

Overview of Four Functional Classification Systems Commonly Used in Cerebral Palsy

by Andrea Paulson and Jilda Vargus-Adams

Children 2017, 4(4), 30; https://0-doi-org.brum.beds.ac.uk/10.3390/children4040030 - 24 Apr 2017

Cited by 105 | Viewed by 37311

Abstract

Cerebral palsy (CP) is the most common physical disability in childhood. CP comprises a heterogeneous group of disorders that can result in spasticity, dystonia, muscle contractures, weakness and coordination difficulty that ultimately affects the ability to control movements. Traditionally, CP has been classified [...] Read more.

Cerebral palsy (CP) is the most common physical disability in childhood. CP comprises a heterogeneous group of disorders that can result in spasticity, dystonia, muscle contractures, weakness and coordination difficulty that ultimately affects the ability to control movements. Traditionally, CP has been classified using a combination of the motor type and the topographical distribution, as well as subjective severity level. Imprecise terms such as these tell very little about what a person is able to do functionally and can impair clear communication between providers. More recently, classification systems have been created employing a simple ordinal grading system of functional performance. These systems allow a more precise discussion between providers, as well as better subject stratification for research. The goal of this review is to describe four common functional classification systems for cerebral palsy: the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), the Communication Function Classification System (CFCS), and the Eating and Drinking Ability Classification System (EDACS). These measures are all standardized, reliable, and complementary to one another. Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

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182 KiB

Open AccessReview

Pressure Injuries in Medically Complex Children: A Review

by Katherine Freundlich

Children 2017, 4(4), 25; https://0-doi-org.brum.beds.ac.uk/10.3390/children4040025 - 07 Apr 2017

Cited by 24 | Viewed by 7292

Abstract

Pressure injuries are a challenging problem in the care of medically complex children. Available evidence is limited, and there are theoretical reasons to use caution before extrapolating adult data, including key differences in body composition, common locations of pressure injury, and association with [...] Read more.

Pressure injuries are a challenging problem in the care of medically complex children. Available evidence is limited, and there are theoretical reasons to use caution before extrapolating adult data, including key differences in body composition, common locations of pressure injury, and association with medical devices. The focus of this article will be to review the definition of a pressure injury and what is known about pathophysiology, prevention, recognition, staging, and treatment of pressure injuries in children with medical complexity. Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

Other

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167 KiB

Open AccessPerspective

The Case for the Use of Nurse Practitioners in the Care of Children with Medical Complexity

by Cheryl Samuels, Tomika Harris, Traci Gonzales and Ricardo A. Mosquera

Children 2017, 4(4), 24; https://0-doi-org.brum.beds.ac.uk/10.3390/children4040024 - 07 Apr 2017

Cited by 5 | Viewed by 5784

Abstract

Although children with medically complex illness represent less than one percent of the total pediatric population, their health care expenditures and health care system utilization far exceed the numbers of other pediatric patients. Nurse practitioners, with their educational background focused on health care [...] Read more.

Although children with medically complex illness represent less than one percent of the total pediatric population, their health care expenditures and health care system utilization far exceed the numbers of other pediatric patients. Nurse practitioners, with their educational background focused on health care promotion and education, are uniquely qualified to reduce this inequity with cost effective care. Currently, nurse practitioners are used in a variety of health care settings and can provide acute and chronic care. Incorporating nurse practitioners at each step in the care of children with medical complexity can improve the quality of life for these children and their families, increase family satisfaction and decrease costs. Full article

(This article belongs to the Special Issue Children with Complex Health Care Needs)

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