1
40
13
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September 2022 List
Text
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September 2022 List
URL Address
<a href="http://doi.org/10.1177/13674935221109683" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935221109683</a>
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Reported Costs of Children with Medical Complexity-A Systematic Review
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Journal of Child Health Care
Date
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2022
Subject
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Children; Systematic review; Chronic disease; Medical complexity; Healthcare; Medical assistance; Medical costs
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Sidra M; Sebastianski M; Ohinmaa A; Rahman S
Description
An account of the resource
Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in administrative databases, (2) compare reported costs for the CMC population in different study settings, and (3) analyze author recommendations related to reported costs. We undertook a systematic search of the following databases: Medical Literature Analysis and Retrieval System Online, Excerpta Medica dataBase, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library with a focus on CMCs as a heterogeneous group. The most common method used n = 11 (41%) to identify the CMC population in administrative data was the Complex Chronic Conditions methodology. The majority of included studies reported on health care service costs n = 24 (89%). Only n = 3 (11%) of the studies included costs from the family perspective. Author recommendations included standardizing how costs are reported and including the family perspective when making care delivery or policy decisions. Health system administrators and policymakers must consider the limitations of reported costs when assessing local costing studies or comparing costs across jurisdictions.
Identifier
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<a href="http://doi.org/10.1177/13674935221109683" target="_blank" rel="noreferrer noopener">10.1177/13674935221109683</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Children
Chronic Disease
healthcare
Journal Of Child Health Care
Medical assistance
Medical Complexity
Medical costs
Ohinmaa A
Rahman S
Sebastianski M
September 2022 List
Sidra M
Systematic Review
-
Dublin Core
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August 2022 List
Text
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August 2022 List
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<a href="http://doi.org/10.1016/j.japh.2022.04.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.japh.2022.04.005</a>
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Identifying opportunities for pediatric medication therapy management in children with medical complexity
Publisher
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Journal of the American Pharmacists Association
Date
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2022
Subject
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Child; Pediatrics; Medical complexity; Medication therapy management
Creator
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Marquez C; Thompson R; Feinstein JA; Orth LE
Description
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BACKGROUND: Despite potential benefits of medication therapy management (MTM) for complex pediatric patients, implementation of pediatric MTM services is rare. OBJECTIVES: To describe how a standardized pediatric MTM model identifies potential interventions and their impact on medication regimen complexity index (MRCI) scores in children with medical complexity (CMC) and polypharmacy. METHODS: This retrospective proof-of-concept study included pediatric patients receiving primary care in a large outpatient primary care medical home for CMC within a tertiary freestanding children's hospital from August 2020 to July 2021. Medication profiles of established patients aged 0-18 years with at least 5 active medications at the time of the index visit were assessed for medication-related concerns, potential interventions, and potential impact of proposed interventions on MRCI scores. RESULTS: Among 100 patients, an average of 3.4 ± 0.3 medication-related concerns was identified using the pediatric MTM model. Common medication-related concerns (>25% of patients) included inappropriate or unnecessary therapy, suboptimal therapy, undertreated symptom, adverse effect, clinically impactful drug-drug interaction, or duplication of therapy. A total of 97% had opportunities for 5.0 ± 2.9 potential interventions. Most common proposed interventions included drug discontinuation trial (69%), patient or caregiver education (55%), dosage form modification (51%), dose modification (49%), and frequency modification (46%). The mean baseline MRCI score was 32.6 (95% CI 29.3-35.8) among all patients. MRCI scores decreased by a mean of 4.9 (95% CI 3.8-5.9) after application of the theoretical interventions (P < 0.001). Mean potential score reduction was not significantly affected by patient age or number of complex chronic conditions. Potential impact of the proposed interventions on MRCI score was significantly greater in patients with higher baseline medication counts (P < 0.001). CONCLUSION: Most CMC would likely benefit from a pharmacist-guided pediatric MTM service. A standardized review of active medication regimens identified multiple medication-related concerns and potential interventions for nearly all patients. Proposed medication interventions would significantly reduce medication regimen complexity as measured by MRCI. Further prospective evaluation of a pharmacist-guided pediatric MTM service is warranted.
Identifier
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<a href="http://doi.org/10.1016/j.japh.2022.04.005" target="_blank" rel="noreferrer noopener">10.1016/j.japh.2022.04.005</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
August 2022 List
Child
Feinstein JA
Journal of the American Pharmacists Association
Marquez C
Medical Complexity
Medication therapy management
Orth LE
Pediatrics
Thompson R
-
Dublin Core
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Title
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June 2022 List
Text
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June 2022 List
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<a href="http://doi.org/10.1001/jamapediatrics.2022.0687" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamapediatrics.2022.0687</a>
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Title
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Prevalence of Children With Medical Complexity and Associations With Health Care Utilization and In-Hospital Mortality
Publisher
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JAMA Pediatrics
Date
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2022
Subject
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Children; Health care utilization; Hospital; Medical complexity; Mortality
Creator
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Leyenaar JK; Schaefer AP; Freyleue SD; Austin AM; Simon TD; Van Cleave J; Moen EL; O'Malley AJ; Goodman DC
Description
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IMPORTANCE: Children with medical complexity (CMC) have substantial health care needs and frequently experience poor health care quality. Understanding the population prevalence and associated health care needs can inform clinical and public health initiatives. OBJECTIVE: To estimate the prevalence of CMC using open-source pediatric algorithms, evaluate performance of these algorithms in predicting health care utilization and in-hospital mortality, and identify associations between medical complexity as defined by these algorithms and clinical outcomes. DESIGN, SETTING, AND PARTICIPANTS: This retrospective cohort study used all-payer claims data from Colorado, Massachusetts, and New Hampshire from 2012 through 2017. Children and adolescents younger than 18 years residing in these states were included if they had 12 months or longer of enrollment in a participating health care plan. Analyses were conducted from March 12, 2021, to January 7, 2022. EXPOSURES: The pediatric Complex Chronic Condition Classification System, Pediatric Medical Complexity Algorithm, and Children With Disabilities Algorithm were applied to 3 years of data to identify children with complex and disabling conditions, first in their original form and then using more conservative criteria that required multiple health care claims or involvement of 3 or more body systems. MAIN OUTCOMES AND MEASURES: Primary outcomes, examined over 2 years, included in-hospital mortality and a composite measure of health care services, including specialized therapies, specialized medical equipment, and inpatient care. Outcomes were modeled using logistic regression. Model performance was evaluated using C statistics, sensitivity, and specificity. RESULTS: Of 1 936 957 children, 48.4% were female, 87.8% resided in urban core areas, and 45.1% had government-sponsored insurance as their only primary payer. Depending on the algorithm and coding criteria applied, 0.67% to 11.44% were identified as CMC. All 3 algorithms had adequate discriminative ability, sensitivity, and specificity to predict in-hospital mortality and composite health care services (C statistic = 0.76 [95% CI, 0.73-0.80] to 0.81 [95% CI, 0.78-0.84] for mortality and 0.77 [95% CI, 0.76-0.77] to 0.80 [95% CI, 0.79-0.80] for composite health care services). Across algorithms, CMC had significantly greater odds of mortality (adjusted odds ratio [aOR], 9.97; 95% CI, 7.70-12.89; to aOR, 69.35; 95% CI, 52.52-91.57) and composite health care services (aOR, 4.59; 95% CI, 4.44-4.73; to aOR, 18.87; 95% CI, 17.87-19.93) than children not identified as CMC. CONCLUSIONS AND RELEVANCE: In this study, open-source algorithms identified different cohorts of CMC in terms of prevalence and magnitude of risk, but all predicted increased health care utilization and in-hospital mortality. These results can inform research, programs, and policies for CMC.
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2022.0687" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2022.0687</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
April 2022 List
Austin AM
Children
Freyleue SD
Goodman DC
Health Care Utilization
Hospital
JAMA Pediatrics
Leyenaar JK
Medical Complexity
Moen EL
Mortality
O'Malley AJ
Schaefer AP
Simon TD
Van Cleave J
-
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Title
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March 2022 List
Text
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March 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.010" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.07.010</a>
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Title
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Symptoms and Suffering at End of Life for Children With Complex Chronic Conditions
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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end of life; Medical complexity; pediatric palliative care; symptom management
Creator
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Marcus KL; Kao PC; Ma C; Wolfe J; DeCourcey DD
Description
An account of the resource
Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and suffering at EOL for children with noncancer, noncardiac CCCs as well as parental distress related to child suffering. Method(s): This study is a secondary data analysis of a cross-sectional, single-center survey of bereaved parents of children with CCCs who died between 2006 to 2015. The primary outcome was parent-reported child suffering in the final two days of life. Result(s): Among 211 eligible parents contacted for participation, 114 completed the survey, and 99 had complete primary outcome data (participation rate 47%). Most children had congenital/chromosomal (42%) or progressive central nervous system (22%) conditions. Twenty-eight percent of parents reported high child suffering in the final two days of life. Parents reported that pain and difficulty breathing caused the greatest suffering for children and distress among themselves. Some parents also reported distress related to uncertainty about child suffering. Parents were less likely to report high child suffering if they were confident in knowing what to expect when their child was dying (AOR 0.20; 95% CI 0.07-0.60) or felt prepared for medical problems at EOL (AOR 0.12; 95% CI 0.04-0.42). Conclusion(s): Nearly one-third of parents of children with CCCs report high suffering in their child's final days of life. Parent preparedness was associated with lower perceived child suffering. Future research should target symptoms contributing to parent and child distress and assess whether enhancing parent preparedness reduces perceived child suffering. Copyright © 2021 American Academy of Hospice and Palliative Medicine
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.010</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
DeCourcey DD
End Of Life
Journal of Pain and Symptom Management
Kao PC
Ma C
March 2022 List
Marcus KL
Medical Complexity
Pediatric Palliative Care
Symptom Management
Wolfe J
-
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Title
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March 2022 List
Text
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March 2022 List
URL Address
<a href="http://doi.org/10.1111/cch.12968" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/cch.12968</a>
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The unintended consequences of COVID-19 public health measures on health care for children with medical complexity
Publisher
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Child: care, health and development.
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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cross-sectional study; complex care; medical complexity; Covid-19; health services
Creator
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Baumbusch J; Lloyd JEV; Lamden-Bennett SR; Ou C
Description
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AIM: The aim of this work is to explore the unintended consequences of pandemic public health measures on health care service usage by children with medical complexity. BACKGROUND: Medical complexity is characterized by the presence of complex, chronic conditions requiring specialized care, substantial health needs, functional dependence and/or limitations, and frequent health care usage. Children with medical complexity are among the highest users of paediatric health care services. METHODS: A web-based, cross-sectional survey was conducted in British Columbia, Canada, between August and September 2020. Inclusion criteria were (a) parent/guardian of at least one child (age 0 to 18 years, inclusive) with medical complexity and (b) residence in British Columbia. A convenience sample of 156 parents completed the survey. Data were analysed using a series of descriptive analyses (frequencies, cross-tabulations) and inferential analyses (binary logistic regressions). RESULTS: Respondents provided information for 188 children with medical complexity. Access to allied health therapies (physio, occupational, and speech and language) and medical specialists drastically declined in the initial months of the pandemic, with a shift from in-person to virtual platforms for these aspects of care. Regression modelling indicated that age and family structure influenced decisions to use in-patient hospital services. CONCLUSIONS: Public health measures implemented in the initial months of the pandemic decreased access to health care services for children with medical complexity. The long-term ramifications of these measures are unknown. Family structure was found to influence decisions to avoid accessing Emergency Department care. Given the volume of services used by these children, paediatric hospital leaders need to take their unique needs into consideration in disaster planning to ensure minimal disruptions in care.
Identifier
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<a href="http://doi.org/10.1111/cch.12968" target="_blank" rel="noreferrer noopener">10.1111/cch.12968</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Baumbusch J
Child: care, health and development.
complex care
COVID-19
Cross-sectional Study
Health Services
Lamden-Bennett SR
Lloyd JEV
March 2022 List
Medical Complexity
Ou C
-
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Title
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November 2021 List
Text
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November 2021 List
URL Address
<a href="http://doi.org/10.12927/hcq.2021.26471" target="_blank" rel="noreferrer noopener">http://doi.org/10.12927/hcq.2021.26471</a>
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Title
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How Children and Youth with Medical Complexity Use Hospital and Emergency Department Care across Canada
Publisher
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Healthcare Quarterly
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Canada; children; Hospitalization; Medical complexity; Readmission; youth
Creator
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McKenzie K; Dudevich A; Costante A; Chen XK; Foebel AD
Description
An account of the resource
Children and youth with medical complexity are a diverse group with uncommon diagnoses, a spectrum of needs and varying access to supports. Although this population represents a small proportion of all children, their unique needs lead to substantial use of healthcare services. With its first pan-Canadian report on children and youth with medical complexity, the Canadian Institute for Health Information examined how this population uses healthcare services. Key findings include the wide variation in the rate of medical complexity among children and youth across Canada. Children and youth with medical complexity were found to require a high proportion of hospital and emergency department care; however, their readmission rates were found to be lower than that of the general pediatric population.
Identifier
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<a href="http://doi.org/10.12927/hcq.2021.26471" target="_blank" rel="noreferrer noopener">10.12927/hcq.2021.26471</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Canada
Chen XK
Children
Costante A
Dudevich A
Foebel AD
Healthcare Quarterly
Hospitalization
McKenzie K
Medical Complexity
November 2021 List
Readmission
Youth
-
Dublin Core
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Title
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October 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.029" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.07.029</a>
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Title
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Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Children; decision-making; communication; medical complexity; parents
Creator
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Jonas D; Scanlon C; Bogetz JF
Description
An account of the resource
CONTEXT: Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nuanced. OBJECTIVES: To review the literature specifically related to the parent experience of medical decision-making for CMC from the parent perspective. METHODS: A comprehensive, systematic approach was undertaken with the goal of identifying emergent themes in the existing literature as well as implications for clinical practice and future research. PubMed and PsycInfo databases were searched for English-language articles published between 1995-2020 that focused on parent experiences/perspectives using the search terms: children with medical complexity, children with serious illness, parent decision-making, parent experience, goals of care, parental priorities, advance care planning, and shared decision-making. RESULTS: The search yielded 300 unique manuscripts; including 32 empirical articles incorporated in this review. The synthesized findings were broken down into three main sections: 1. types of decisions that parents of CMC face, 2. key factors that influence parental decision-making for CMC, and 3. reasons that the decision-making process for parents of CMC is unique. The findings suggest that parents should be considered experts in their child's care and should be incorporated in shared decision-making in a culturally appropriate manner. CMC should have their personhood valued and providers require specialized training in communication. CONCLUSIONS: Parents of CMC have unique needs in their decision-making process and benefit from shared decision-making, continuity of care, collaborative communication and tailored, individualized care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.029" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.029</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Bogetz JF
Children
Communication
Decision-making
Jonas D
Journal of Pain and Symptom Management
Medical Complexity
October 2021 List
Parents
Scanlon C
-
Dublin Core
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Title
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September 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2020 List
URL Address
<a href="http://doi.org/10.1186/s12887-020-02253-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-020-02253-z</a>
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Title
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Comorbidity patterns and socioeconomic inequalities in children under 15 with medical complexity: a population-based study
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Administrative data; Child; Comorbidity; Health inequalities; Latent class analysis; Medical complexity; Socioeconomic factors
Creator
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Carrilero N; Dalmau-Bueno A; García-Altés A
Description
An account of the resource
BACKGROUND: Children with medical complexity (CMC) denotes the profile of a child with diverse acute and chronic conditions, making intensive use of the healthcare services and with special health and social needs. Previous studies show that CMC are also affected by the socioeconomic position (SEP) of their family. The aim of this study is to describe the pathologic patterns of CMC and their socioeconomic inequalities in order to better manage their needs, plan healthcare services accordingly, and improve the care models in place. METHODS: Cross-sectional study with latent class analysis (LCA) of the CMC population under the age of 15 in Catalonia in 2016, using administrative data. LCA was used to define multimorbidity classes based on the presence/absence of 57 conditions. All individuals were assigned to a best-fit class. Each comorbidity class was described and its association with SEP tested. The Adjusted Morbidity Groups classification system (Catalan acronym GMA) was used to identify the CMC. The main outcome measures were SEP, GMA score, sex, and age distribution, in both populations (CMC and non-CMC) and in each of the classes identified. RESULTS: 71% of the CMC population had at least one parent with no employment or an annual income of less than €18,000. Four comorbidity classes were identified in the CMC: oncology (36.0%), neurodevelopment (13.7%), congenital and perinatal (19.8%), and respiratory (30.5%). SEP associations were: oncology OR 1.9 in boys and 2.0 in girls; neurodevelopment OR 2.3 in boys and 1.8 in girls; congenital and perinatal OR 1.7 in boys and 2.1 in girls; and respiratory OR 2.0 in boys and 2.0 in girls. CONCLUSIONS: Our findings show the existence of four different patterns of comorbidities in CMC and a significantly high proportion of lower SEP children in all classes. These results could benefit CMC management by creating more efficient multidisciplinary medical teams according to each comorbidity class and a holistic perspective taking into account its socioeconomic vulnerability.
Identifier
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<a href="http://doi.org/10.1186/s12887-020-02253-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-020-02253-z</a>
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2020
Administrative data
Bmc Pediatrics
Carrilero N
Child
Comorbidity
Dalmau-Bueno A
García-Altés A
Health inequalities
Latent Class Analysis
Medical Complexity
September 2020 List
Socioeconomic Factors
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.077" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.077</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Poly-Symptomatology in Pediatric Palliative Care Patients: Baseline Evaluation of SHARE Parent-Reported Data (RP409)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
symptom management; pediatric palliative care; medical complexity; Poly-Symptomatology; parental report data
Creator
An entity primarily responsible for making the resource
Feudtner C; Hays R; Friedrichsdorf S; Johnston E; Friebert S; Kang T; Wolfe J
Description
An account of the resource
Objectives: * Describe the study design of this study. * Specify the 5 most prevalent symptoms in pediatric palliative care. * Describe how symptom count, frequency, and severity contribute to poly-symptomatology. Importance: Pediatric palliative care (PPC) teams care for patients with a wide variety of conditions, often with substantial medical complexity, making symptom management challenging. Parental report data regarding the frequency and severity of symptoms in these patients has been limited. Objective(s): Characterize the prevalence, frequency, and severity of specific symptoms, as reported by parents of patients receiving PPC. Method(s): Parent-reported data were gathered from baseline questionnaires in a two-year longitudinal study being conducted at 7 children's hospitals in the Pediatric Palliative Care Research Network (PPCRN) SHARE project. Data included child's demographic and clinical characteristics, and 15 symptoms measured via the Memorial Symptom Assessment Scale, which scores symptom frequency (1, almost never; 2, sometimes; 3, a lot; 4, almost always) and severity (1, slight; 2, moderate; 3, severe; 4, very severe). Result(s): Of the 501 PPC patients thus far enrolled with completed data, 55% were male, 66% white, mean age of 7.3 years (+/-7.3 SD); the most prevalent complex chronic morbidities included neurologic (48%), cardiovascular (47%), and respiratory (34%) conditions; 72% were technology-dependent. Parents reported an average of 4.9 (+/-3.3 SD) symptoms per patient. The five most common symptoms were pain (55%; among patients with pain, mean frequency, 2.6; mean severity, 2.3), lack of energy (53%; 2.8; 2.4), irritability (47%; 2.4; 2.1), drowsiness (43%; 2.6; 2.2), and shortness of breath (39%; 2.7; 2.4). 10% of patients had markedly elevated level of symptoms (minimal frequency and severity scores of "a lot" and "severe" for each symptom), with the typical patient in this subgroup having 6 symptoms. Conclusion(s): A majority of children receiving palliative care are experiencing poly-symptomatology. An important sub-group of patients suffer frequently from numerous severe symptoms. Impact: Assessment and management of poly-symptomatology is a critical aspect of PPC. Copyright © 2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.077</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
August 2020 List
Feudtner C
Friebert S
Friedrichsdorf S
Hays R
Johnston E
Journal of Pain and Symptom Management
Kang T
Medical Complexity
parental report data
Pediatric Palliative Care
Poly-Symptomatology
Symptom Management
Wolfe J
-
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July 2020 List
Text
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July 2020 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14354" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14354</a>
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Title
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Challenges primary care providers face when caring for children with medical complexity
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Developmental Medicine and Child Neurology
Date
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2019
Subject
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children; children with medical complexity; CMC; medical complexity; PCP; primary care providers
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Savolt T; Smith T; Goodwin E; Kennedy M
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Background and Objective(s): Children with medical complexity (CMC) have multiple chronic health problems resulting in functional limitations and high resource utilization. Providing primary care for CMC can be time consuming and costly. This study aims to identify the perceived barriers that pose challenges for primary care providers (PCPs) when caring for CMC in Kansas (KS) and Missouri (MO). Study Design: Cross-sectional study. Study Participants and Settings: A survey was disseminated to PCPs in MO and KS through Children's Mercy Hospital, The University of Kansas Hospital, the Office of Rural Health Education, and the MO and KS chapters of the American Academy of Pediatrics. The voluntary-response sample included 115 PCPs. CMC clinic providers were excluded. Material(s) and Method(s): A onetime cross-sectional REDCap survey adapted from previously published surveys was disseminated via email. The data collected were self-identified and categorical. Statistical analysis was performed using a twotailed ANOVA with a p value of 0.05. Result(s): The top barrier to providing care for CMC was insufficient time in clinic (20%) while lack of understanding billing was perceived as not at all a barrier (38%). PCPs were least prepared to handle tracheostomy problems (39%). Access to comprehensive care plans (27%), more time in clinic (21%), and education offerings with continuing education credit (18%) were rated as most helpful to improve ability to care for CMC. Lack of support services was a significant barrier for non-residents compared to residents (45.6% vs. 14.3%, p<0.01) and for PCPs in rural areas compared to providers in metropolitan settings (64.3% vs 29.2%, p=0.015). Metropolitan providers identified insufficient time in clinic to care for patient's needs to be a significant barrier compared to providers in rural areas (65.2% vs 15.4%, p=0.0014). Residents reported they were significantly less prepared to transition a patient from adolescent to adult care (91.7% vs. 48.5%), provide routine healthcare (58.3% vs. 12.3%) and write home health orders (97.2% vs. 59.7%) compared to non-residents (p<0.001). Metropolitan providers felt unprepared to provide palliative care to patients compared to providers in rural areas (86.4% vs 35.7%, p=0.0001). Residents and metropolitan providers both ranked simulation as a more helpful education modality compared with non-residents and rural providers (p<0.05). Conclusions or Significance: Perceived barriers, level of preparedness, and preferred education intervention while caring for CMC varied based on training and practice location. These factors must be considered when developing strategies for education and improving care delivery for CMC.
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<a href="http://doi.org/10.1111/dmcn.14354" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14354</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Children
Children With Medical Complexity
CMC
Developmental Medicine and Child Neurology
Goodwin E
July 2020 List
Kennedy M
Medical Complexity
PCP
primary care providers
Savolt T
Smith T
-
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Title
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January 2019 List
Text
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Citation List Month
January 2019 List
URL Address
<a href="http://doi.org/10.1111/cch.12632" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1111/cch.12632</a>
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Care Maps and Care plans for Children with Medical Complexity
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Child: Care, Health and Development
Date
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2018
Subject
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medical complexity; care maps; care plans
Creator
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Adams S; Nicholas D; Mahant S; Weiser N; Kanani R; Boydell K; Cohen E
Description
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Abstract Introduction The support of families in the care of children with medical complexity (CMC) requires the integration of health care provider (HCP) medical knowledge and family experience. Care plans largely represent HCP information and care maps demonstrate the family experience. Understanding the intersection between a care plan and care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). Method This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n=15). Subsequent interviews with parents (n=15) and HCPs (n=30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. Results Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: 1) Utility of care plans and maps; and 2) Intersection of care plans and care maps. Discussion Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents? experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.
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<a href="http://doi.org/10.1111/cch.12632" target="_blank" rel="noreferrer noopener">10.1111/cch.12632</a>
2018
Adams S
Boydell K
care maps
care plans
Child: Care, Health and Development
Cohen E
January 2019 List
Kanani R
Mahant S
Medical Complexity
Nicholas D
Weiser N
-
Dublin Core
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Title
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May 2018 List
Text
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May 2018 List
URL Address
<a href="http://doi.org/http://dx.doi.org/10.1542/peds.2017-1284F" target="_blank" rel="noreferrer noopener">http://doi.org/http://dx.doi.org/10.1542/peds.2017-1284F</a>
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Title
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Models of Care Delivery for Children With Medical Complexity
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Pediatrics
Date
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2018
Subject
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Caregiver; medical complexity; models of care; Only Child; palliative care; pediatric
Creator
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Pordes E; Gordon J; Sanders LM; Cohen E
Description
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Children with medical complexity (CMC) are a subset of children and youth with special health care needs with high resource use and health care costs. Novel care delivery models in which care coordination and other services to CMC are provided are a focus of national and local health care and policy initiatives. Current models of care for CMC can be grouped into 3 main categories: (1) primary care-centered models, (2) consultative- or comanagement-centered models, and (3) episode-based models. Each model has unique advantages and disadvantages. Evaluations of these models have demonstrated positive outcomes, but most studies have limited generalizability for broader populations of CMC. A lack of standardized outcomes and population definitions for CMC hinders assessment of the comparative effectiveness of different models of care and identification of which components of the models lead to positive outcomes. Ongoing challenges include inadequate support for family caregivers and threats to the sustainability of models of care. Collaboration among key stakeholders (patients, families, providers, payers, and policy makers) is needed to address the gaps in care and create best practice guidelines to ensure the delivery of high-value care for CMC.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Identifier
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<a href="http://doi.org/10.1542/peds.2017-1284f" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-1284f</a>
2018
Caregiver
Cohen E
Gordon J
May 2018 List
Medical Complexity
models of care
Only Child
Palliative Care
Pediatric
Pediatrics
Pordes E
Sanders LM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2016 List
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Title
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Community-based Pediatric Palliative Care For Health Related Quality Of Life, Hospital Utilization And Costs Lessons Learned From A Pilot Study
Publisher
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Bmc Palliative Care
Date
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2016
Subject
The topic of the resource
Medical Complexity; Health Related Quality Of Life; Generic Core Scales; Impact; Hospital Utilization; Pilot Study; Pediatric Palliative Care; Reliability; Health Policy & Services; Illness; Cost-effectiveness; Home; Validity; Vulnerable Children; Pedsql(tm); Chronic Disease; United States; Health Care Sciences & Services
Chronic Disease; Cost-effectiveness; Health Related Quality Of Life; Hospital Utilization; Pediatric Palliative Care; Pilot Study
Creator
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J Goldhagen
Description
An account of the resource
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes.
METHODS:
A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years 2002-2007 were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years 2000-2006 were included in the utilization and cost study.
RESULTS:
HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05).
CONCLUSION:
The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers.
Identifier
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DOI: 10.1186/s12904-016-0138-z
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
August 2016 List
BMC Palliative Care
Chronic Disease
Cost-effectiveness
Generic Core Scales
Health Care Sciences & Services
Health Policy & Services
Health Related Quality Of Life
Home
Hospital Utilization
Illness
Impact
J Goldhagen
Medical Complexity
Pediatric Palliative Care
Pedsql(tm)
Pilot Study
Reliability
United States
Validity
Vulnerable Children