Children with Complex Health Care Needs

A special issue of Children (ISSN 2227-9067).

Deadline for manuscript submissions: closed (28 February 2017) | Viewed by 82850

Special Issue Editor


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Guest Editor
Program for Children with Medically Complex Needs, Department of Pediatrics, Monroe Carell Jr. Children's Hospital at Vanderbilt University, Nashville, TN, USA
Interests: children with medical complexity

Special Issue Information

Dear Colleagues,

Patients with multiple chronic conditions occupy a growing percentage beds in children’s hospitals and utilize a disproportionate share of health care resources. Greater attention to this population has the potential to improve quality of care and simultaneously reduce its cost.

In this Special Issue in Children we focus on children with medical complexity. We seek to assemble a collection of reviews exploring the care of this important group of children.
We look forward to receiving your contributions. We are interested in the medical care of this population, as well as social and epidemiological aspects.

Prof. David E. Hall
Guest Editor

Please submit your abstract by email ([email protected]) before 12 December 2016
Deadline for full-manuscript submissions: 28 February 2017

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • children with medical complexity
  • medically complex children
  • severe chronic disease
  • palliative care
  • technology dependence
  • Chronically critically ill children
  • Multisystem chronic disease
  • Chronic complex conditions

Published Papers (8 papers)

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Research

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1395 KiB  
Communication
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://doi.org/10.3390/children4060045 - 6 Jun 2017
Cited by 49 | Viewed by 7426
Abstract
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  
Article
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://doi.org/10.3390/children4050042 - 22 May 2017
Cited by 16 | Viewed by 4667
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  
Article
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://doi.org/10.3390/children4050033 - 29 Apr 2017
Cited by 15 | Viewed by 6254
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  
Review
Respiratory Care Considerations for Children with Medical Complexity
by Jackie Chiang and Reshma Amin
Children 2017, 4(5), 41; https://doi.org/10.3390/children4050041 - 19 May 2017
Cited by 22 | Viewed by 6547
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  
Review
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://doi.org/10.3390/children4050035 - 4 May 2017
Cited by 4 | Viewed by 5626
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  
Review
Overview of Four Functional Classification Systems Commonly Used in Cerebral Palsy
by Andrea Paulson and Jilda Vargus-Adams
Children 2017, 4(4), 30; https://doi.org/10.3390/children4040030 - 24 Apr 2017
Cited by 112 | Viewed by 38072
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  
Review
Pressure Injuries in Medically Complex Children: A Review
by Katherine Freundlich
Children 2017, 4(4), 25; https://doi.org/10.3390/children4040025 - 7 Apr 2017
Cited by 24 | Viewed by 7439
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  
Perspective
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://doi.org/10.3390/children4040024 - 7 Apr 2017
Cited by 5 | Viewed by 5896
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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