Understanding the Needs of Children With Medical Complexity.
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ABSTRACT: Introduction
Children with medical complexity (CMC) are characterized by chronic conditions, functional limitations, technology dependence, and high health care utilization. There are limited formal training opportunities in the provision of complex care for pediatric residents.Methods
We developed a module to enable target learners to understand unique needs of CMC and the general pediatrician's role in creating a medical home. The module was piloted in a single pediatric residency program. The 60-minute session incorporated small-group activities and didactic instruction. Learners were given formative pre- and posttest questions to check understanding and completed a 1-minute paper to summarize anticipated changes in practice. Qualitative content analysis was used to identify themes in written responses.Results
Fifteen pediatrics residents participated in the module at a single children's hospital. Most residents had not had a complex care clinical rotation. Themes in learner knowledge of CMC included recognizing functional limitations and recurrent health care utilization. Themes from anticipated changes in practice included having less fear/anxiety when approaching care for CMC and asking about diverse areas of need, including nonmedical.Discussion
This core module was developed as part of a national systematic approach to complex care curriculum development. It has the potential to be adapted to frame a broader complex care curriculum and to be implemented with other learners in the health professions who care for this vulnerable patient population. The pilot study informed implementation in multiple residency programs, with the goal of enabling future pediatricians to provide high-quality care within a medical home for CMC.
SUBMITTER: Huth K
PROVIDER: S-EPMC6342416 | biostudies-literature | 2018 Apr
REPOSITORIES: biostudies-literature
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Project description:BackgroundChildren with medical complexity (CMC) have inter-related health and social needs; however, interventions to identify and respond to social needs have not been adapted for CMC. The objective of this study was to evaluate the feasibility of implementing social needs screening and assessment within pediatric complex care programs.MethodsWe implemented systematic social needs assessment for CMC (SSNAC) at two tertiary care centers in three phases: (1) pre-implementation, (2) implementation, and (3) implementation monitoring. We utilized a multifaceted implementation package consisting of discrete implementation strategies within each phase. In phase 1, we adapted questions from evidence-informed screening tools into a 21-item SSNAC questionnaire, and we used published frameworks to inform implementation readiness and process. In phases 2-3, clinical staff deployed the SSNAC questionnaire to parents of CMC in-person or by phone as part of usual care and adapted to local clinical workflows. Staff used shared decision-making with parents and addressed identified needs by providing information about available resources, offering direct assistance, and making referrals to community agencies. Implementation outcomes included fidelity, feasibility, acceptability, and appropriateness.ResultsObservations from clinical staff characterized fidelity to use of the SSNAC questionnaire, assessment template, and shared decision-making for follow-up on unmet social needs. Levels of agreement (5-point Likert scale; 1 = completely disagree; 5 = completely agree) rated by staff for key implementation outcomes were moderate to high for acceptability (mean = 4.7; range = 3-5), feasibility (mean = 4.2; range = 3-5), and appropriateness (mean = 4.6; range = 4-5). 49 SSNAC questionnaires were completed with a 91% response rate. Among participating parents, 37 (76%) reported ≥ 1 social need, including food/nutrition benefits (41%), housing (18%), and caregiver needs (29%). Staff responses included information provision (41%), direct assistance (30%), and agency referral (30%).ConclusionsIt was feasible for tertiary care center-based pediatric complex care programs to implement a standardized social needs assessment for CMC to identify and address parent-reported unmet social needs.
| S-EPMC8606226 | biostudies-literature
Project description:ObjectiveTo identify subgroups of U.S. children with special health care needs (CSHCN) and characterize key outcomes.Data sourceSecondary analysis of 2009-2010 National Survey of CSHCN.Study designLatent class analysis grouped individuals into substantively meaningful classes empirically derived from measures of pediatric medical complexity. Outcomes were compared among latent classes with weighted logistic or negative binomial regression.Principal findingsLCA identified four unique CSHCN subgroups: broad functional impairment (physical, cognitive, and mental health) with extensive health care (Class 1), broad functional impairment alone (Class 2), predominant physical impairment requiring family-delivered care (Class 3), and physical impairment alone (Class 4). CSHCN from Class 1 had the highest ED visit rates (IRR 3.3, p < .001) and hospitalization odds (AOR: 12.0, p < .001) and lowest odds of a medical home (AOR: 0.17, p < .001). CSHCN in Class 3, despite experiencing more shared decision making and medical home attributes, had more ED visits and missed school than CSHCN in Class 2 (p < .001); the latter, however, experienced more cost-related difficulties, care delays, and parents having to stop work (p < .001).ConclusionsRecognizing distinct impacts of cognitive and mental health impairments and health care delivery needs on CSHCN outcomes may better direct future intervention efforts.
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Project description:ObjectivesThe goal of this study was to develop an algorithm based on International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), codes for classifying children with chronic disease (CD) according to level of medical complexity and to assess the algorithm's sensitivity and specificity.MethodsA retrospective observational study was conducted among 700 children insured by Washington State Medicaid with ?1 Seattle Children's Hospital emergency department and/or inpatient encounter in 2010. The gold standard population included 350 children with complex chronic disease (C-CD), 100 with noncomplex chronic disease (NC-CD), and 250 without CD. An existing ICD-9-CM-based algorithm called the Chronic Disability Payment System was modified to develop a new algorithm called the Pediatric Medical Complexity Algorithm (PMCA). The sensitivity and specificity of PMCA were assessed.ResultsUsing hospital discharge data, PMCA's sensitivity for correctly classifying children was 84% for C-CD, 41% for NC-CD, and 96% for those without CD. Using Medicaid claims data, PMCA's sensitivity was 89% for C-CD, 45% for NC-CD, and 80% for those without CD. Specificity was 90% to 92% in hospital discharge data and 85% to 91% in Medicaid claims data for all 3 groups.ConclusionsPMCA identified children with C-CD (who have accessed tertiary hospital care) with good sensitivity and good to excellent specificity when applied to hospital discharge or Medicaid claims data. PMCA may be useful for targeting resources such as care coordination to children with C-CD.
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Project description:BackgroundThe goal of Project Austin, an initiative to improve emergency care for rural children who are medically complex (CMC), is to provide an Emergency Information Form (EIF) to their parents/caregivers, to local Emergency Medical Services, and Emergency Departments. EIFs are standard forms recommended by the American Academy of Pediatrics that provide pre-planned rapid response instructions, including medical conditions, medications, and care recommendations, for emergency providers. Our objective is to describe the workflows and perceived utility of the provided emergency information forms (EIFs) in the acute medical management of CMC.MethodsWe sampled from two key stakeholder groups in the acute management of CMC: four focus groups with emergency medical providers from rural and urban settings and eight key informant interviews with parents/caregivers enrolled in an emergency medical management program for CMC. Transcripts were thematically analyzed in NVivo© by two coders using a content analysis approach. The thematic codes were combined into a codebook and revised the themes present through combining relevant themes and developing of sub-themes until they reached consensus.ResultsAll parents/caregivers interviewed were enrolled in Project Austin and had an EIF. Emergency medical providers and parents/caregivers supported the usage of EIFs for CMC. Parents/caregivers also felt EIFs made emergency medical providers more prepared for their child. Providers identified that EIFs helped provide individualized care, however they were not confident the data was current and so felt unsure they could rely on the recommendations on the EIF.ConclusionEIFs are an easy way to engage parents, caregivers, and emergency medical providers about the specifics of a care for CMC during an emergency. Timely updates and electronic access to EIFs could improve their value for medical providers.
| S-EPMC10166030 | biostudies-literature
Project description: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.
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Project description:In this review, we consider the potential service needs of children of substance abusing parents based on what we know about the risk outcomes faced by these children and the parenting deficits often present in these families. Importantly, our review does not address the etiological role of parental substance abuse in children's negative outcomes but instead we discuss the complex inter-related risk factors that often co-occur with and exacerbate risk associated with parental alcohol and drug use. We first review studies showing the elevated risk that children of substance abusing parents face in general for poorer academic functioning; emotional, behavioral, and social problems; and an earlier onset of substance use, faster acceleration in substance use patterns, and higher rates of alcohol and drug use disorders. We then review studies showing contextual risk factors for children of substance abusing parents, including parenting deficits (less warmth, responsiveness, and physical and verbal engagement as well as harsher and more over-involved interaction styles), greater risk for child maltreatment, and less secure attachment patterns. We conclude with a discussion of future directions for research and guidelines for professionals working with children and their families where parental substance abuse is present.
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Project description:Background: Children with medical complexity (CMC) are high utilizers of health care services. Telehealth encounters may provide a means to improve care outcomes for this population. Objective: To evaluate the feasibility, usability, and impact of an in-home telehealth device in the care of CMC. Methods: This single-center feasibility study employed a nonblinded randomized clinical trial design. English-speaking caregivers of children within a pediatric complex care program with home Wi-Fi were eligible for participation. Participants were randomized 1.5:1 with stratification based on tracheostomy status to a control group that received usual care or an intervention group that received a telehealth device for in-home use. Patients were followed up for 4 months. The primary outcome was successful device connectivity and data transmission. Data included clinician encounter device usability; caregiver satisfaction; and encounter type, purpose, and cost. Descriptive statistics, negative binomial regression, and Kaplan-Meier plot were used for analysis. Results: Twenty-four patients were enrolled (9 controls, 15 in the intervention group) in September 2016. The telehealth device was attempted in 73 encounters. Device connectivity was successful 96% of the time. Image and sound quality were acceptable in 98% of visits. Caregivers expressed their overall satisfaction with the device. The hospitalization rate was lower in the intervention group (0.77 vs. 1.14 intensive care unit days/patient-months), resulting in $9,425/USD per patient savings compared with the control group. Conclusion: Despite small sample size and short observation period, this study demonstrated that use of an in-home telehealth device is feasible, well received by caregivers, and can result in decreased hospitalizations when compared with usual care.
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Project description:BackgroundParenting children with special health care needs can be challenging particularly if children have complex conditions. Parents may struggle to manage their child's health and their own emotions, contributing to poorer health outcomes for the family. Frequent healthcare contact presents opportunities to intervene, but current evidence review is limited. This review scopes and synthesizes interventions to improve health, wellbeing and parenting skills.MethodsUsing formal scoping review methodology MEDLINE, EMBASE, PsycINFO, CINAHL, The Cochrane Library, ERIC, ASSIA, HMIC and OpenGrey were searched to February 2017. Citations were double screened according to predetermined eligibility criteria. Data were extracted and synthesized on study design, population, measurement tools, and results.ResultsSixty-five studies from 10,154 citations were included spanning parenting programs, other parent behavior change interventions, peer support, support for hospital admission and discharge and others. Interventions for parents of children with a wide range of conditions were included. These targeted a broad selection of parent outcomes, delivered by a wide variety of professionals and lay workers. Most studies reported positive outcomes. No serious adverse events were noted but issues identified included group and peer relationship dynamics, timing of interventions in relation to the child's disease trajectory, the possibility of expectations not fulfilled, and parent's support needs following intervention. Children with medical complexity were not identified explicitly in any studies.ConclusionsThe range of interventions identified in this review confirms that parents have significant and diverse support needs, and are likely to benefit from a number of interventions targeting specific issues and outcomes across their child's condition trajectory. There is much scope for these to be provided within existing multi-disciplinary teams during routine health care contacts. Careful tailoring is needed to ensure interventions are both feasible for delivery within routine care settings and relevant and accessible for parents of children across the complexity spectrum. Further review of the existing literature is needed to quantify the benefits for parents and assess the quality of the evidence. Further development of interventions to address issues that are relevant and meaningful to parents is needed to maximize intervention effectiveness in this context.
| S-EPMC6716943 | biostudies-literature
Project description:IntroductionGeneral pediatricians have a major role in the care of children with medical complexity (CMC) in hospital and community settings. CMC are often affected by chronic multisystem diseases and functional limitations and may use a wheelchair or other aids for mobility. Dedicated training opportunities to perform comprehensive clinical assessments for this specialized population are lacking.MethodsWe developed a module focused on special considerations for CMC history taking and physical examination that was piloted in a pediatric residency program. The 60-minute session included a video of a clinical assessment of a child in a wheelchair. The module offered suggestions for incorporating patients or standardized patients as optional activities. Target learners answered formative pre- and posttest questions to check understanding and completed a 1-minute paper to convey lessons learned. Qualitative content analysis identified themes in written responses.ResultsFifteen pediatrics residents in a single program participated in the module. Most had not received any formal training in complex care. Themes in learner knowledge of steps in a clinical encounter included defining family goals and providing anticipatory guidance. Themes from responses about anticipated changes in clinical practice included systematic and comprehensive approach to history taking, thorough examination, and importance of safe transfers.DiscussionDeveloped as part of a national initiative in complex care curriculum development, this module can be adapted for interprofessional learners who provide care for CMC, with the goal of enabling future members of health care teams to provide high-quality clinical assessments for CMC.
| S-EPMC6342381 | biostudies-literature
Project description:ObjectivesThe chronic conditions and functional limitations experienced by children with medical complexity (CMC) place them at disproportionate risk for COVID-19 transmission and poor outcomes. To promote robust vaccination uptake, specific constructs associated with vaccine hesitancy must be understood. Our objective was to describe demographic, clinical, and vaccine perception variables associated with CMC parents' intention to vaccinate their child against COVID-19.MethodsWe conducted a cross-sectional survey (June-August 2021) for primary caregivers of CMC between ages 5 to 17 at an academic medical center in the Midwest. Multivariable logistic regression examined associations between vaccination intent and selected covariates.ResultsAmong 1330 families, 65.8% indicated vaccination intent. In multivariable models, demographics had minimal associations with vaccination intent; however, parents of younger children (<12 years) had significantly lower adjusted odds of vaccination intent (adjusted odds ratio [95% confidence interval]: 0.26 [0.17-0.3]) compared to parents of older children (≥12 years). CMC with higher severity of illness, ie, those with ≥1 hospitalization in the previous year (versus none) or >1 complex chronic condition (vs 1), had higher adjusted odds of vaccination intent (1.82 [1.14-2.92] and 1.77 [1.16-2.71], respectively). Vaccine perceptions associated with vaccine intention included "My doctor told me to get my child a COVID-19 vaccine" (2.82 [1.74-4.55]); and "I'm concerned about my child's side effects from the vaccine" (0.18 [0.12-0.26]).ConclusionsOne-third of CMC families expressed vaccine hesitation; however, constructs strongly associated with vaccination intent are potentially modifiable. Pediatrician endorsement of COVID-19 vaccination and careful counseling on side effects might be promising strategies to encourage uptake.
| S-EPMC10039457 | biostudies-literature