Children With Medical Complexity Research Articles

Examining the economic impacts of caregiving among families of children of medical complexity: A qualitative study to inform inclusive economic models.

Children with medical complexity (CMC) represent a heterogeneous group of children with multiple, chronic healthcare conditions. Caregivers of CMC experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child's life. The economic impacts of caregiving are yet understudied in the CMC context. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease because they lack direct caregiver voice and context of caregiving activities and existing methods have been noted to be ableist. The purpose of this study was to explore the economic spillover impacts of caregiving among families of CMC using their own words and perspectives with the intent of expanding caregiver-centered perspectives when developing economic models. This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of CMC and their social networks. Caregivers of CMC were recruited through a Pediatric Complex Care clinic at an academic medical center in the mid-Atlantic region, USA. This study used inductive qualitative descriptive methods and the use of a template to define features of the person impacted and to define the economic construct as either a direct or indirect/spillover cost. Twenty caregivers were included in this study. Perspectives from the caregivers of CMC revealed several key themes: (1) time investment in caregiving - impacting the primary caregivers; (2) physical and mental health impacts - impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care - impacting the child themselves, siblings, and the primary caregivers; (4) impacts to the social network/social capital. The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of CMC. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. n/a. RR2-10.2196/14810.

Medical Complexity, Language Use, and Outcomes in the Pediatric ICU.

To determine whether use of a language other than English (LOE) would be associated with medical complexity, and whether medical complexity and LOE together would be associated with worse clinical outcomes. The primary outcome of this single-site retrospective cohort study of PICU encounters from September 1, 2017, through August 31, 2022 was an association between LOE and medical complexity. Univariable and multivariable analyses were performed between demographic factors and medical complexity, both for unique patients and for all encounters. We investigated outcomes of initial illness severity (using Pediatric Logistic Organ Dysfunction-2), length of stay (LOS), days without mechanical ventilation or organ dysfunction using a mixed effects regression model, controlling for age, sex, race and ethnicity, and insurance status. There were 6802 patients and 10 011 encounters. In multivariable analysis for all encounters, Spanish use (adjusted odds ratio [aOR], 1.29; 95% confidence interval [CI], 1.11-1.49) and language other than English or Spanish (LOES) (aOR, 1.36; 95% CI, 1.02-1.80) were associated with medical complexity. Among unique patients, there remained an association between use of Spanish and medical complexity in multivariable analysis (aOR, 1.26; 95% CI, 1.05-1.52) but not between LOES and medical complexity (aOR, 1.30; 95% CI, 0.92-1.83). Children with medical complexity (CMC) who used an LOES had fewer organ dysfunction-free days (P = .003), PICU LOS was 1.53 times longer (P = .01), and hospital LOS was 1.45 times longer (P = .01) compared with CMC who used English. Use of an LOE was independently associated with medical complexity. CMC who used an LOES had a longer LOS.

Caregivers’ perspectives on disaster preparedness and evacuation plan for children relying on home ventilators or home oxygen

Children with medical complexity (CMC) and their caregivers are particularly vulnerable to the pernicious effects of disasters. This multicenter observational investigation in Ehime Prefecture, Japan, aimed to assess caregivers' perspectives on the disaster preparedness for children relying on home ventilators or home oxygen, determine their inclinations towards evacuation, and identify their concerns regarding a disaster. Caregivers of children receiving home care with a ventilator or oxygen therapy were recruited. Participants were administered multiple-choice questions and requested to provide free-text comments about their concerns. As a result, of 99 participants, 49.5 % (N = 49) reported being well-prepared for a disaster. While 27.3 % (N = 27) stated that they would evacuate, 25.2 % (N = 25) stated never evacuate. Caregivers for totally dependent children were more likely to decline evacuation. 68.7 % (N = 68) reported never having discussed with medical professionals about disaster preparedness. 44.4 % (N = 44) reported not having a backup power supply. 66.7 % (N = 66) expressed concerns about residing in an evacuation shelter. Other concerns included power outages, inadequate resources, and a lack of feasible evacuation options. In conclusion, Many caregivers perceive that they are insufficiently prepared for a disaster. Caregivers have a diverse range of concerns about disasters. Medical professionals and other stakeholders should recognize caregivers’ difficulties and promote communications about disaster preparedness.Practice Implications.Professionals engaged in the care of CMC should acknowledge unique needs of children and their caregivers, assure them of their right to survive during a disaster, and facilitate discussions about preparedness. The viewpoints of children and their caregivers should be taken into consideration when making decisions about policy and infrastructure adjustments.

Examination of construct of “outcome” items evaluated by families of children with medical complexity using home-visit nursing services in Japan

This study aims to create “Outcome” items evaluated by families of children with medical complexity (CMC) (CF-Outcome) that are similar to the Home-visit Nursing Quality Indicators for Children (HNQIC) “Outcome” items, to examine the construct of “CF-Outcome.” This study was cross-sectional, and participants were 150 families of children with medical complexity. Based on the ten items of the HNQIC “Outcome” section, we developed ten outcome items evaluated with 5-point Likert scales, and tested the validity of the construct and internal consistency of the “CF-Outcome.” Spearman correlation coefficients were calculated to identify correlations between the “CF-Outcome” factors and five “Service user satisfaction” factors. The exploratory factor analysis yielded 8 items in 3 factors, with a Cronbach's α of 0.813. For the correlation between factors of “CF-Outcome” and “Service user satisfaction”, there was no statistically significant correlation between the second factor of “CF-Outcome” and the following three factors: “Service user satisfaction”: <24-hour support>, <Care according to change>, and <Proactive patient care>. However, there were statistically significant correlations among the other factors, from r = .165 (p < .01) to r = .367 (p < .001). The findings suggest the usefulness of the “CF-Outcome” for CMC families to evaluate the outcomes of home-visit nursing services. However, there is a need to improve the wording of items to eliminate variations in responses among raters. We need to clarify the concepts of the three factors further, and examine specific items that can measure the concepts.

Parents' Trigger Tool for Children with Medical Complexity - PAT-CMC: Development of a recognition tool for clinical deterioration at home.

To develop a trigger tool for parents and lay caregivers of children with medical complexity (CMC) at home and to validate its content. This was a multi-method study, using qualitative data, a Delphi method and a concept mapping approach. A three-round electronic Delphi was performed from December 2021 to April 2022 with a panel of 23 expert parents and 30 healthcare providers, supplemented by a preliminary qualitative exploration of children's signs of deterioration and three consensus meetings to develop the PArents' Trigger Tool for Children with Medical Complexity (PAT-CMC). Cognitive interviews with parents were performed to assess the comprehensiveness and comprehensibility of the tool. The COREQ checklist, the COSMIN guidelines and the CREDES guidelines guided the reporting respectively of the qualitative study, the development and content validity of the trigger tool and the Delphi study. The PAT-CMC was developed and its content validated to recognize clinical deterioration at home. The tool consists of 7 main clusters of items: Breathing, Heart, Devices, Behaviour, Neuro-Muscular, Nutrition/Hydration and Other Concerns. A total of 23 triggers of deterioration were included and related to two recommendations for escalation of care, using a traffic light coding system. Priority indicators of clinical deterioration of CMC were identified and integrated into a validated trigger tool designed for parents or other lay caregivers at home, to recognize signs of acute severe illness and initiate healthcare interventions. The PAT-CMC was developed to guide families in recognizing signs of deterioration in CMC and has potential for initiating an early escalation of care. This tool may also be useful to support education provided by healthcare providers to families before hospital discharge. Parents of CMC were directly involved in the selection of relevant indicators of children's clinical deterioration and the development of the trigger tool. They were not involved in the design, conducting, reporting or dissemination plans of this research.

Pediatric Population Management Classification for Children with Medical Complexity.

Improving the overall care of children with medical complexity (CMC) is often beset by challenges in proactively identifying the population most in need of clinical management and quality improvement. The objective of the current study was to create a system to better capture longitudinal risk for sustained and elevated utilization across time using real-time electronic health record (EHR) data. A new Pediatric Population Management Classification (PPMC), drawn from visit diagnoses and continuity problem lists within the EHR of a tristate health system, was compared with an existing complex chronic conditions (CCC) system for agreement (with weighted κ) on identifying CCMC, as well as persistence of elevated charges and utilization from 2016 to 2019. Agreement of assignment PPMC was lower among primary care provider (PCP) populations than among other children traversing the health system for specialty or hospital services only (weighted κ 62% for PCP vs. 82% for non-PCP). The PPMC classification scheme, displaying greater precision in identifying CMC with persistently high utilization and charges for those who receive primary care within a large integrated health network, may offer a more pragmatic approach to selecting children with CMC for longitudinal care management.

Post-acute day and night non-invasive respiratory intervention use and outcome: A brief report.

This study aimed to describe daytime and nighttime use and outcome of non-invasive respiratory intervention (NIRI) for infants born prematurely and for children with medical complexity (CMC) during a post-acute care hospital (PACH) admission. Thirty-eight initial PACH admissions (October 2018 through September 2020) for premature infants (< 1 year; n = 19) and CMC (> 1 year; n = 19) requiring NIRI during the day and/or at night were retrospectively examined. Measures included: 1) daytime and nighttime NIRI use by type (supplemental oxygen therapy via low-flow nasal cannula or positive airway pressure [PAP] via high-flow nasal cannula, continuous positive airway pressure, or biphasic positive airway pressure at admission and discharge) and 2) daytime and nighttime NIRI outcome reduction, increase, or no change from admission to discharge. For the total sample (n = 38), daytime vs nighttime NIRI use was significantly different (p < 0.001). At both admission and discharge, supplemental oxygen was the most common NIRI during the day, while PAP was most common at night. From admission to discharge, seven (18%) infants and children had a positive change (reduced NIRI) during the day, while nine (24%) had a positive change at night. At discharge, 11/38 (29%) infants and children required no daytime NIRI, while 4/38 (11%) required no day or night NIRI. NIRI use differs between day and night at PACH admission and discharge for CMC. Reductions in NIRI were achieved during the day and at night from PACH admission to discharge for both infants born prematurely and for children with varied congenital, neurological, or cardiac diagnoses.

Unplanned Readmissions in Children with Medical Complexity in Saudi Arabia: A Large Multicenter Study.

Children with medical complexity (CMC) account for a substantial proportion of healthcare spending, and one-third of their expenditures are due to readmissions. However, knowledge regarding the healthcare-resource utilization and characteristics of CMC in Saudi Arabia is limited. To describe hospitalization patterns and characteristics of Saudi CMC with an unplanned 30-day readmission. This retrospective study included Saudi CMC (aged 0-14 years) who had an unplanned 30-day readmission at six tertiary centers in Riyadh, Jeddah, Dammam, Alahsa, and Almadina between January 2016 and December 2020. Hospital-based inclusion criteria focused on CMC with multiple complex chronic conditions (CCCs) and technology assistance (TA) device use. CMC were compared across demographics, clinical characteristics, and hospital-resource utilization. A total of 9139 pediatric patients had unplanned 30-day readmission during the study period, of which 680 (7.4%) met the inclusion criteria. Genetic conditions were the most predominant primary pathology (66.3%), with one-third of cases (33.7%) involving the neuromuscular system. During the index admission, pneumonia was the most common diagnosis (33.1%). Approximately 35.1% of the readmissions were after 2 weeks. Pneumonia accounted for 32.5% of the readmissions. After readmission, 16.9% of patients were diagnosed with another CCC or received a new TA device, and the in-hospital mortality rate was 6.6%. The rate of unplanned 30-day readmissions in children with medical complexity in Saudi Arabia is 7.4%, which is lower than those reported from developed countries. Saudi children with CCCs and TA devices were readmitted approximately within similar post-discharge time and showed distinct hospitalization patterns associated with specific diagnoses. To effectively reduce the risk of 30-day readmissions, targeted measures must be introduced both during the hospitalization period and after discharge.

Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity

ObjectiveProvide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). MethodsCross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student’s t-tests compared the sample’s mean T-scores to US population norms. Pearson’s correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. ResultsCompared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, −0.39 to −0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. ConclusionFamily caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.

Designing eHealth interventions for children with complex care needs requires continuous stakeholder collaboration and co-creation

ObjectiveHospital-to-home (H2H) transitions challenge families of children with medical complexity (CMC) and healthcare professionals (HCP). This study aimed to gain deeper insights into the H2H transition process and to work towards eHealth interventions for its improvement, by applying an iterative methodology involving both CMC families and HCP as end-users. MethodsFor 20-weeks, the Dutch Transitional Care Unit consortium collaborated with the Amsterdam University of Applied Sciences, HCP, and CMC families. The agile SCREAM approach was used, merging Design Thinking methods into five iterative sprints to stimulate creativity, ideation, and design. Continuous communication allowed rapid adaptation to new information and the refinement of solutions for subsequent sprints. ResultsThis iterative process revealed three domains of care – care coordination, social wellbeing, and emotional support – that were important to all stakeholders. These domains informed the development of our final prototype, ‘Our Care Team’, an application tailored to meet the H2H transition needs for CMC families and HCP. ConclusionComplex processes like the H2H transition for CMC families require adaptive interventions that empower all stakeholders in their respective roles, to promote transitional care that is anticipatory, rather than reactive. InnovationA collaborative methodology is needed, that optimizes existing resources and knowledge, fosters innovation through collaboration while using creative digital design principles. This way, we might be able to design eHealth solutions with end-users, not just for them.

Communication in disasters to support families with children with medical complexity and special healthcare needs: a rapid scoping review.

Disasters can disrupt normal healthcare processes, with serious effects on children who depend upon regular access to the health care system. Children with medical complexity (CMC) are especially at risk. These children have chronic medical conditions, and may depend on medical technology, like feeding tubes. Without clear, evidence-based processes to connect with healthcare teams, families may struggle to access the services and supports they need during disasters. There is limited research about this topic, which has been pushed forward in importance as a result of the COVID-19 pandemic. The authors therefore conducted a rapid scoping review on this topic, with the intention to inform policy processes. Both the peer-reviewed and gray literatures on disaster, CMC, and communication were searched in summer 2020 and spring 2021. Twenty six relevant articles were identified, from which four main themes were extracted: 1. Cooperative and collaborative planning. 2. Proactive outreach, engagement, and response. 3. Use of existing social networks to connect with families. 4. Return to usual routines. Based on this review, good practices appear to involve including families, professionals, other stakeholders, and children themselves in pre-disaster planning; service providers using proactive outreach at the outset of a crisis event; working with existing peer and neighborhood networks for support; employing multiple and two-way communication channels, including social media, to connect with families; re-establishing care processes as soon as possible, which may include virtual connections; addressing mental health issues as well as physical functioning; and prioritizing the resumption of daily routines. Above all, a well-established and ongoing relationship among children, their caregivers, and healthcare teams could reduce disruptions when disaster strikes.

Pediatrician perspectives on barriers and facilitators to discharge instruction comprehension and adherence for parents of children with medical complexity.

High rates of posthospitalization errors are observed in children with medical complexity (CMC). Poor parent comprehension of and adherence to complex discharge instructions can contribute to errors. Pediatrician views on common barriers and facilitators to parent comprehension and adherence are understudied. To examine pediatrician perspectives on barriers and facilitators experienced by parents in comprehension of and adherence to inpatient discharge instructions for CMC. We conducted a qualitative, descriptive study of attending pediatricians (n = 20) caring for CMC in inpatient settings (United States and Canada) and belonging to listservs for pediatric hospitalists/complex care providers. We used purposive/maximum variation sampling to ensure heterogeneity (e.g., hospital, region). A multidisciplinary team designed and piloted a semistructured interview guide with pediatricians who care for CMC. Team members conducted semistructured interviews via phone or video call. Interviews were audiorecorded and transcribed. We analyzed transcripts using content analysis; codes were derived a priori from a conceptual framework (based on the Pediatric Self-Management Model) and a preliminary transcript analysis. We applied codes and identified emerging themes. Pediatricians identified three themes as barriers and facilitators to discharge instruction comprehension and adherence: (1) regimen complexity, (2) access to the healthcare team (e.g., inpatient team, outpatient pediatrician, home nursing) and resources (e.g., medications, medical equipment), and (3) need for a family centered and health literacy-informed approach to discharge planning and education. Next steps include the assessment of parent perspectives on barriers and facilitators to discharge instruction comprehension and adherence for prents of CMC and the development of intervention strategies.

Family perspectives on provider conversations about housing needs for children with medical complexity.

Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur. From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (<26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts. Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time. Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.

Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Mental health of caregivers of children with medical complexity: group-based trajectory modelling

ObjectiveTo describe the mental health trajectories of caregivers of children with medical complexity (CMC) and explore child characteristics associated with below-average caregiver mental health.DesignA secondary analysis of prospectively collected data...

Electronic Health Record Usability When Caring for Children With Medical Complexity.

To evaluate usability of and clinician satisfaction with the electronic health record (EHR) in the context of caring for children with medical complexity (CMC) at a large academic pediatric hospital and to identify key areas for targeted improvements. Cross-sectional study of pediatric faculty and advanced practice providers across several pediatric specialties using an online Research Electronic Data Capture survey. EHR usability was measured with 6 validated questions from the National Usability-Focused Health Information System Scale, and satisfaction with common EHR functionalities was measured with 6 original Likert-scale questions and 3 free-text questions. Results were analyzed with bivariate testing. More than half of providers completed the survey (n = 81, response rate 56%). When asked 6 positively-phrased, validated usability questions, a majority of respondents either agreed or were neutral. Respondents were most dissatisfied with information quality of the summary view and most satisfied with physician communication. Older respondents were less satisfied with EHR usability (P < .01). Focusing on functionalities needed for CMC, the majority of respondents were dissatisfied with the chart review process. More respondents were dissatisfied with order entry (P = .002) and documentation (P = .017) when caring for CMC compared with caring for other patients. The most cited challenges were locating recent patient data, performing an accurate medication reconciliation, and lack of specialized documentation templates. Clinicians are less satisfied with common EHR functionalities when caring for CMC compared with caring for all other patients. Targeted interventions to improve usability and common EHR functionalities for CMC are necessary to improve the user experience.

Rural-urban disparities in health care delivery for children with medical complexity and moderating effects of payer, disability, and community poverty.

Children with medical complexity (CMC) may be at increased risk of rural-urban disparities in health care delivery given their multifaceted health care needs, but these disparities are poorly understood. This study evaluated rural-urban disparities in health care delivery to CMC and determined whether Medicaid coverage, co-occurring disability, and community poverty modified the effects of rurality on care delivery. This retrospective cohort study of 2012-2017 all-payer claims data from Colorado, Massachusetts, and New Hampshire included CMC <18years. Health care delivery measures (ambulatory clinic visits, emergency department visits, acute care hospitalizations, total hospital days, and receipt of post-acute care) were compared for rural- versus urban-residing CMC in multivariable regression models, following established methods to evaluate effect modification. Of 112,475 CMC, 7307 (6.5%) were rural residing and 105,168 (93.5%) were urban residing. A total of 68.9% had Medicaid coverage, 33.9% had a disability, and 39.7% lived in communities with >20% child poverty. In adjusted analyses, rural-residing CMC received significantly fewer ambulatory visits (risk ratio [RR]=0.95, 95% confidence interval [CI]: 0.94-0.96), more emergency visits (RR=1.12, 95% CI: 1.08-1.16), and fewer hospitalization days (RR=0.90, 95% CI=0.85-0.96). The estimated modification effects of rural residence by Medicaid coverage, disability, and community poverty were each statistically significant. Differences in the odds of having a hospitalization and receiving post-acute care did not persist after incorporating sociodemographic and clinical characteristics and interaction effects. Rural- and urban-residing CMC differed in their receipt of health care, and Medicaid coverage, co-occurring disabilities, and community poverty modified several of these effects. These modifying effects should be considered in clinical and policy initiatives to ensure that such initiatives do not widen rural-urban disparities.

Changes in hospitalization populations by level of complexity at children's hospitals.

It is important for hospitals to understand how hospitalizations for children are changing to adapt and best accommodate the future needs of all patient populations. This study aims to understand how hospitalizations for children with medical complexity (CMC) and non-CMC have changed over time at children's hospitals, and how hospitalizations for these children will look in the future. Children with 3+ complex chronic conditions (CCC) accounted for 7% of discharges and over one-quarterof days and one-third of costs during the study period (2012-2022). The number of CCCs was associated with increased growth in discharges, hospital days, and costs. Understanding these trends can help hospitals better allocate resources and training to prepare for pediatric patients across the spectrum of complexity.

Impact of disability-based discrimination in healthcare on parents of children with medical complexity.

To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC). In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Data collection and analysis occurred iteratively; constant comparison methods were used to identify themes describing the impact of disability-based discrimination in pediatric healthcare on the parents of CMC. Thirty participants from 15 US states were interviewed. Four themes were developed regarding the impact of disability-based discrimination in healthcare on parents. The themes were: (1) discrimination leads to a loss of trust in healthcare providers; (2) discrimination increases the burden of caregiving; (3) discrimination impacts parental well-being; and (4) racism and poverty-based discrimination amplifies disability-based discrimination. The experience of discrimination toward their child results in loss of trust and therapeutic relationship between provider and parent, causes increased burden to the family, and contributes to decreased parental well-being. These experiences are magnified in minoritized families and in families perceived to have a lower socioeconomic status based on insurance type.

Health care utilization after enrollment in an outpatient structured clinical program for children with medical complexity

Abstract Objectives Although children with medical complexity (CMC) with high health resource utilization use outpatient structured clinical programs (SCP) to optimize their health, little is known about variation in trends of their health service use shortly after enrollment. We measured these trends and assessed the utility of patient characteristics to predict them. Methods Retrospective analysis of 506 CMC newly enrolled in an outpatient, academic SCP. We measured outpatient and inpatient health service use for the first 6 months following enrollment. Using cluster analysis, we categorized CMC with similar trends by health service. We assessed patient demographic (e.g., age) and clinical [type and number of complex chronic conditions (CCC)] characteristics with the cluster categories. Results Most (90.3%) CMC enrolled had ≥1 CCCs; 53.8% had ≥3 CCCs. For all CMC, outpatient specialty visits, phone calls, and hospitalizations (not involving ICU) decreased significantly over the first 6 months after enrollment. For example, the hospitalization rate decreased from 9.7% to 4.5% in the 1st and 6th months, respectively, (P &amp;lt; 0.001). Cluster analysis revealed four categories of hospitalization trends, 6 months after enrollment: 72.9% of CMC had no hospital use; 16.0% had increased then decreased use; 8.3% had decreased use; and 2.8% had increased use. No patient and clinical characteristics clearly distinguished which hospitalization trend CMC experienced. Conclusions Although the overall population of CMC experienced decreased outpatient and inpatient health services utilization over time, this decrease was not uniformly experienced. Fundamental patient demographic and clinical characteristics did not predict health service trends.