Families Of Children With Medical Complexity Research Articles

Improving Screening for Social Determinants of Health in an Outpatient Complex Care Clinic.

Families of children with medical complexity (CMC) may face challenges related to Social Determinants of Health (SDoH). Although standardized SDoH screening has been implemented in numerous medical settings, there has been limited study of screening among CMC. Our global aim is to improve access to institutional and community resources for families of CMC with identified needs. Here, we aimed to establish SDoH screening for families in our outpatient Complex Care Center and attain a screening rate of 80%. A multidisciplinary team in our clinic used quality improvement methods to implement and study an expanded SDoH screen, which included 3 questions specific to the needs of CMC (ie, emergency planning, social support, and medical equipment concerns). Interventions, informed and refined by 5 key drivers, were tested over a 12-month period. A statistical process control chart tracked key outcome and process measures over time. SDoH screening sustained a mean of 80% after implementation during the study period. Incorporating registration staff in screen distribution was our most impactful intervention. At least 1 SDoH concern was identified on 56% of screens; concerns specific to CMC and mental health were most frequently reported. A total of 309 responses to positive screens were reported in total. Successful implementation of an expanded, tailored SDoH screen revealed a multitude of social needs specific to families of CMC that otherwise may not have been recognized. Our team continues to develop and distribute resources to address identified needs.

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.

The impact of the COVID-19 pandemic on families of children with medical complexity: A qualitative study of caregivers' experiences.

Families of children with medical complexity (CMC) have been negatively affected by the COVID-19 pandemic, experiencing challenges such as decreased access to services, increased financial hardship and increased isolation. However, there are few qualitative studies which explore parental experiences. The aim of the present study was to describe the impact of the COVID-19 pandemic on families of CMC. Caregivers of CMC were recruited from a large hospital in the Midwestern United States. They completed a semistructured qualitative interview assessing the impact of COVID-19 on their child's care, which was analysed using interpretive phenomenological analysis. Twenty caregivers who were predominantly White, married and female participated. Emergent themes included the importance of protecting their child's health to ensure their physical safety, greater social isolation and missed medical services related to concerns about exposure, clinic closures and/or other logistical changes. Participants noted that the convenience of telehealth was a positive outcome of COVID-19 that facilitated care while reducing time and resource challenges. This study highlights the importance of protecting the health of CMC through continued safe access to in-person or telehealth services. It is important to prioritise emotional support services for families of CMC as they have experienced increased stress and social isolation during and after the COVID-19 pandemic. This topic should be explored among diverse families with CMC across multiple healthcare systems.

In their own words: Safety and quality perspectives from families of hospitalized children with medical complexity.

Children with medical complexity (CMC) experience adverse events due to multiorgan impairment, frequent hospitalizations, subspecialty care, and dependence on multiple medications/equipment. Their families are well-versed in care and can help identify safety/quality gaps to inform improvements. Although previous studies have shown families identify important safety/quality gaps in hospitals, studies of inpatient safety/quality experience of CMC and their families are limited. To address this gap and identify otherwise unrecognized, family-prioritized areas for improving safety/quality of CMC, we conducted a secondary qualitative analysis of safety reporting surveys among families of CMC. Explore safety reports from families of hospitalized CMC to identify areas to improve safety/quality. We analyzed free-text responses from predischarge safety reporting surveys administered to families of CMC at a quaternary children's hospital from April 2018 to November 2020. Using a qualitative descriptive approach, we categorized responses into standard clinical categories. Three team members inductively generated an initial codebook to apply iteratively to responses. Reviewers coded responses collaboratively, resolved discrepancies through consensus, and generated themes. Outcomes: family-reported areas of safety/quality improvement. pre-discharge family surveys. Two hundred and eight/two hundred and thirty-seven (88%) families completed surveys; 83 families offered 138 free-text safety responses about medications, feeds, cares, and other categories. Themes included unmet expectations of hospital care/environment, lack of consistency, provider-patient communication lapses, families' expertise about care, and the value of transparency. To improve care of CMC and their families, hospitals can manage expectations about hospital limitations, improve consistency of care/communication, acknowledge family expertise, and recognize that family-observed quality concerns can have safety implications. Soliciting family input can help hospitals improve care in meaningful, otherwise unrecognized ways.

Family-Educator Partnership in the Development of Entrustable Professional Activities in Complex Care.

Incorporating patient and family voices in the development of entrustable professional activities (EPAs) is not standard practice. Care of children with medical complexity (CMC) is an area of pediatrics that relies on family partnership, and families of CMC are ideal partners in EPA development given their expertise in their child's care and experience interacting with the health care system. The authors describe their model for partnering with families to develop EPAs and reflect on the unique contributions of family leaders to the process. After recruitment of family leaders from a national organization of families and friends of children with special health care needs, the authors used a multistage process for EPA development from June 2019 to February 2021. Family leaders were integrated throughout the process, including creating EPA descriptions, revising content across all EPAs, appraising EPAs through virtual focus groups with other key stakeholders, and finalizing and publishing EPAs. The authors used content analysis to identify recommendations for patient- and family-integrated EPA development. Family leaders and educators partnered in every phase of developing EPAs for the care of CMC, including as content experts, editors, focus group facilitators, and coauthors. Family leaders recommended substantive changes to all EPAs, including revising language, augmenting content, and modifying scope of practice. In addition, content analysis of family leaders' revisions yielded 10 recommendations to ensure that written EPA descriptions are patient- and family-centered. The described process of EPA development for the care of CMC models how families can be integrated into competency framework development and highlights their contributions. Family leader recommendations for embedding patient and family voices in EPA descriptions can serve as a guide for EPA development in other specialties.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

Housing Need Among Children With Medical Complexity: A Cross-Sectional Descriptive Study of Three Populations.

Children with medical complexity (CMC) are hypothesized to have unique housing and accessibility needs due to their medical fragility and medical technology dependency; however, research on prevalence and types of housing need in CMC is limited. The objective was to describe housing need in families of CMC, and to compare housing need across CMC, children with one chronic condition (Type 1 diabetes; CT1D) and healthy children (HC). This cross-sectional descriptive study assessed housing suitability, adequacy, affordability, stress, stability, and accessibility using survey methodology. Participants were caregivers of CMC, CT1D and HC at a tertiary-care pediatric hospital. The association of housing need outcomes across groups was analyzed using logistic and ordinal logistic regression models, adjusting for income, educational attainment, employment status, community type, immigration status, child age, and number of people in household. Four hundred ninety caregivers participated. Caregivers of CMC reported increased risk of housing-related safety concerns (aOR 3.1 [1.3-7.5]), using a common area as a sleeping area (5.6 [2.0-16.8]), reducing spending (4.6 [2.3-9.5]) or borrowing money to afford rent (2.9 [1.2-6.7]), experiencing housing stress (3.3 [1.8-6.0]), and moving or considering moving to access health/community services (15.0 [6.4-37.6]) compared to HC. CMC were more likely to experience multiple indicators of housing need compared to CT1D and HC even after adjusting for sociodemographic factors, suggesting an association between complexity of child health conditions and housing need. Further research and practise should consider screening for and supporting housing need in CMC.

A Theory for Understanding Parental Workload and Capacity to Care for Children With Medical Complexity.

Children with medical complexity (CMC) experience poor health outcomes despite the high cost of care, and their parents face challenges in providing complex care. Poor health outcomes may be related to an imbalance between parental demands to manage care and their ability to meet the demands needed to provide complex care. However, this phenomenon has not been explored. In addition, much of the existing research focused on CMC lacks an overarching theoretical framework. The purpose of this article is to outline factors that impact families of CMC described in the literature. This article proposes a modified framework using theory derivation, which highlights the concepts of parental workload and capacity and demonstrates how they are related to CMC health. A revised theoretical framework using theory derivation by Walker and Avant is presented using findings from the CMC literature that most affect the parents of these children. Applying content from two existing theories using concepts of relevance results in a framework that provides richer insight into the relationship between parental workload and parental capacity, particularly when parental workload outweighs parental capacity. This framework allows for the examination of how an imbalance between workload and capacity impacts CMC health outcomes. Although further study is needed to test the proposed theory, the framework can be used to examine these relationships with hopes of developing interventions to decrease parental workload and enhance parental ability.

99 Impact of COVID-19 pandemic on children with medical complexity: Parental perspective about the role of a Complex Care program

Primary Subject areaComplex CareBackgroundThe COVID-19 pandemic led to major and rapid organizational and structural healthcare changes including a switch from ambulatory services towards telemedicine and decreased access to home services. Children with medical complexity (CMC) require many medical services and are generally prone to infectious complications. Little is known about the impact of the pandemic on families of CMC. Understanding how CMC families experience the COVID-19 pandemic is essential to tailor healthcare services to answer their needs more effectively.ObjectivesWe explored parental experience of CMC during the COVID-19 pandemic, and how the complex care program (CCP) answers their new needs.Design/MethodsThis qualitative study was conducted between July 2020 and January 2021 in a tertiary care pediatric university hospital centre. Semi-structured interviews were done with parents of CMC, admitted in the CCP at least 1 year prior to the beginning of the pandemic. The interview guide was co-constructed by physicians and nurses from the CCP. Interviews were transcribed verbatim and analyzed using NVivo. Data were organized into codes and categories. Thematic content analysis was performed by grouping categories and highlighting emerging themes.ResultsEleven families (14 parents – 4 fathers, including 3 couples) were interviewed. The first wave of the pandemic seemed to have caused important uncertainty and anxiety amongst parents of CMC. Almost all the parents reported cancelling numerous appointments in order to avoid coming to the hospital at all costs. Some parents, worrying specifically about the fragility of their child, stopped working and stayed home to reduce transmission risks. Fear of facing shortages in medications, nutritional supplements and medical equipment for home care was frequently expressed. They did not express worries about the de-confinement periods. The support provided by the CCP’s staff was greatly appreciated, namely active problem-solving via phone calls, videoconferences, emails and pictures, leading to fewer hospital visits and less need to seek emergency care. Some reported that more general communication from the CCP (e.g., a weekly information email), would have helped to interpret the overwhelming amount of information from the media. Parents expressed a strong desire to maintain telemedicine services after the pandemic.ConclusionThe COVID-19 pandemic brought additional worries to parents of CMC enrolled in CCPs, including fear of shortages and virus transmission. Direct communication with the CCP and remote problem-solving were greatly appreciated by families. Improvement to follow-up include finding ways to help interpreting data from the media.

120 The Experience of Housing Need Amongst Families Caring for Children with Medical Complexity: A Qualitative Study

Abstract Primary Subject area Complex Care Background Caregivers of children with medical complexity (CMC) face many financial, social and emotional stressors related to their child’s medical condition(s). Previous research has demonstrated that financial stress among this population can have an impact on their housing situation. Families of CMC may face other unique housing challenges such as disability accommodations in the home and housing space and layout. Objectives The primary aim of this study was to explore families’ perspectives and experiences of housing need, and its relationship to their child’s health status as it pertains to CMC. Design/Methods We conducted a qualitative study using semi-structured interviews to identify themes surrounding families of CMC’s experiences of housing need. Parents of CMC were recruited through purposive sampling from the Complex Care Program at a tertiary pediatric health sciences centre. Recruitment ceased when thematic saturation was reached, as determined by consensus of the research team. Interviews were recorded, transcribed verbatim, coded, and analyzed using thematic analysis. Results Twenty parents completed the interview, of whom 89% were mothers and 42% identified a non-English language as their first language. Two major themes and five subthemes (in parentheses) were identified: 1) the impact of health on housing (housing preferences, housing possibilities, housing outcome as a trade-off) and 2) the impact of housing on health (health of the caregiver, health of the child). Some parents reported that their child’s medical needs resulted in specific preferences regarding the location and layout of their home. Parents also indicated that their caregiving role often affected their income and home ownership status, which in turn, affected their housing possibilities. Thus, the housing situation (location and layout of the home) was often the result of a trade-off between the parent’s housing preferences and possibilities. Conclusion Housing is a recognized social determinant of health. We found that among CMC, health also appears to be a significant determinant of housing as families reported that the health of their child impacted their housing preferences and the options available to them (possibilities). To support the health of CMC and their families, policies targeting improved access to subsidized housing, improved sources of funding and regulations allowing families who rent to make accessibility changes are vital. Future research should investigate the impact of household income on housing need and identify interventions to support appropriate housing for CMC.

Integrated care for children with medical complexity living in rural Australia – an evaluation of family experiences using the Paediatric Integrated Care Survey

1. Introduction: The number of children with medical complexity (CMC) residing in regional/rural Australia is growing, challenging the health system to provide equitable and accessible care. Families of CMC experience problems in accessing appropriate care locally; they have high out-of-pocket costs and family disruptions because of long travel distances to access care in metropolitan paediatric hospitals. 2. The Practice Change: The Murrumbidgee Local Health District (MLHD) in New South Wales (NSW), Australia, in collaboration with the Sydney Children’s Hospitals Network (SCHN) partnered with families and local services to co-design a Model of Care (MoC) to better meet the needs of CMC, their families and local services3. Aim and theory of change: To demonstrate changes in parent-reported experiences, we used the Paediatric Integrated Care Survey (PICS) in a longitudinal cohort design at baseline, and 6 months after enrolment in the MoC.4. Targeted population and stakeholders: To qualify for enrolment in the new MoC children had a diagnosed condition involving more than one organ system, were medically fragile or reliant on medical technology, or had used health services frequently in the last 12 months e.g. >6 emergency department presentations, >4 hospital admissions and >10 outpatient clinic visits. Stakeholders included families of CMC, healthcare providers and managers working in the MLHD and and at the SCHN.5. Timeline: The new MoC was implemented in 2018 and CMC have been systematically identified, and enrolled in the MoC. The PICS was administered at baseline and at 6 months.6. Highlights – innovation, impact and outcome: 41 CMC have been enrolled and 18 of the families completed the PICS at both time points. Difficulties navigating healthcare systems, fragmented care, poor communication, and limited care planning and goal setting were apparent at baseline. After accessing the MoC for at least 6 months (6-14 months) there was a 33% increase in written short term care goals (p=0.045). Care teams were 11% more likely to discuss healthcare decisions that impact the whole family (p=0.005) and intra-team communication improved for 5.5% of families (p=0.003). Interestingly, 22% of families were less comfortable letting team members know about concerns about their child’s healthcare (p=0.001). The care coordination team in the MoC reported valuing the PICS results as an assessment of need for integrated care.7. Comments on sustainability and 8. Transferability: The Moc has been embedded into the system in the MLHD, a rural area of NSW, Australia. The clinical teams working with families of CMC felt that the the PICS results informed their practice. The MoC, including assessments using the PICS has been adapted to another rural area - the Southern NSW LHD.9. Conclusions, 10. Discussion, and 11. Lessons learned: Using the PICS periodically during implementation of the new MoC provides feedback loops to inform future model adjustments. The PICS has highlighted the need for shared care plans and recognition of the impacts of caring for a CMC on family functioning. Qualitative research is needed to better provide context to the longitudinal PICS data.

Moving Pediatric Complex Care Forward: Big Data and National Research Collaborations.

The growing population of children with medical complexity (CMC), especially those with neurologic impairment (NI), is increasingly the focus of researchers, clinician leaders, and policy makers.1 In this issue of Pediatrics, Mpody et al2 add to this emerging literature base by clearly demonstrating that NI, a common health condition among CMC, is strongly associated with postoperative pneumonia. Using data from the National Surgical Quality Improvement Program (NSQIP), the authors confirm what most pediatricians learn during training: compared with children without underlying neurologic comorbidities, children with NI are at significantly higher risk for developing pneumonia and experiencing prolonged hospitalizations after a surgical procedure.3This study raises important questions, some of which are noted by the authors. For example, which specific clinical characteristics put children with cerebral palsy or neuromuscular disorders at increased risk for postoperative pneumonia, and which ones are protective? Among children with NI, which surgical procedures are associated with the highest risk of postoperative complications? How do other postoperative outcome metrics (eg, 30-day rehospitalization rate) differ by NI status? Answering these questions will improve clinical decision-making and clinicians’ ability to engage in shared decision-making with families of CMC and NI.Importantly, this study demonstrates how big data can improve care and highlights the need to increase efforts in organizing national data collection collaborations. In addition to the NSQIP, other large datasets, such as PEDSnet or PediQUEST, that draw from electronic health records and patient- and family-generated data sources across multiple locations enable targeted examinations of pediatric subpopulations often limited by small sample sizes at any one institution.4,5 However, despite significant advancements in informational technology over the last 2 decades, data collection infrastructure is not fully integrated into health systems serving CMC and NI.6 Additionally, challenges in appropriately classifying children by diagnoses in large datasets remain. As the authors note, many children in the NSQIP database have conditions in multiple NI categories (eg, a child may have both cerebral palsy and seizure disorder because of a remote hypoxic-ischemic event), making it difficult to ascertain which is truly driving increased risk of postoperative pneumonia. Even with expert chart extractors, this is a limitation of such datasets and points to the need for significant investment to optimize their utility.7Mpody et al2 discuss identifying effective postoperative pneumonia prevention strategies, which illuminates potential future research directions yet also has broader implications. The authors review the topic of perioperative oral care, a low-cost and low-burden intervention that clearly deserves further evaluation. Alternatively, examining pre- and perioperative respiratory physiotherapy may be considered given successes with this resource in adult populations across a wide range of surgical procedures.8 One could also justify studying adaptation of Enhanced Recovery After Surgery protocols (multimodal evidence-based approaches for the care of adult surgical patients), not to mention comparing different anesthesia regimens (eg, intravenous versus inhalation) given the risk of interactions between anesthetic agents and the multitude of central nervous system–acting medications children with NI are often prescribed.9,10There is a paucity of clinically relevant interventional research focused on the CMC and NI population.11 Unlike the body of literature supporting the patient- and family-centered medical home and pediatric complex care centers, the evidence guiding day-to-day clinical management of CMC with NI is woefully insufficient. In part, this is due to challenges inherent to all pediatric research, but it also reflects barriers unique to children with complex chronic health conditions. Not only are population sizes small, but for any particular condition, there exists high levels of heterogeneity regarding disease severity, stability, duration of an illness experience, development, and functioning. Multicenter complex care research collaborations to address these barriers are rare and need to be fostered to improve clinical management.As we recognize these challenges, the pipeline for developing pediatric complex care investigators must be expanded. Early research opportunities should be available to students and trainees in all relevant disciplines. Academic institutions and national funding agencies should increase early career development support (eg, postdoctoral research mechanisms, career development awards) of investigators whose scholarship is focused on topics directly relevant and impactful to the health and well-being of CMC and NI. Secondly, pediatric health care systems (ie, children’s hospitals) should ensure clinicians have the time and tools to collaborate in and contribute to research and quality initiatives.12 Lastly, current investigators should familiarize themselves and employ advanced methodologies in clinical informatics (eg, incorporation of machine learning into clinical decision-making) and interventional research (eg, Bayesian decision theory, adaptive trial designs, propensity score analyses).13–16Although significant progress in pediatric complex care has been made over the past decade, the field still faces enormous questions and challenges in its quest to improve the health and well-being of all CMC and NI. We hope studies such as this one by Mpody et al2 inspire more investigators and clinicians to focus their talent and expertise on pediatric complex care medicine.

Cost of Caregiving on Parents of Children With Medical Complexity and Life-Limiting Conditions.

* Abbreviations: CMC — : children with medical complexity LLC — : life-limiting condition In this issue of Pediatrics , two studies are presented in which researchers explore challenges faced by parent caregivers. Hartley et al1 draw attention to reduced physical health among parents caring for children with life-limiting conditions (LLCs), whereas Bayer et al2 highlight decreased mental and emotional health in parents of children with medical complexity (CMC). For >10 years, I have worked in biomedical ethics and patient advocacy with families of CMC, many of whom also have LLCs. Sadly, I find it unsurprising that Hartley et al1 found 84% of studies in which researchers look at the physical health of caregivers for children with LLCs showed “parent health was directly and negatively impacted by the nature of the care they provided to their child,” whereas Bayer et al2 found “almost one-fifth of parents of CMC self-report poor or fair mental health.” I can speak to these truths both professionally and personally. Among caregivers with whom I have worked (most of whom are mothers), the inability to achieve time for self-care (whether emotional, mental, or physical) is a common topic. This ranges from one mother unable to leave her child with complex medical problems long enough to get a haircut for over 2 years, to multiple mothers repeatedly missing physical or mental health appointments for themselves. Inability to address these needs presents further in our conversations as reports of long-standing sleep deprivation, frequent health problems like colds and tooth abscesses, increased irritability, and anxiety over their ability to fulfill caregiving and family obligations. My professional insight is built on my own caregiving experiences because both of my children were born with a complex rare disease that can shorten life expectancy. My daughter, the more affected child, died shortly before age five. My son is stable at the age … Address correspondence to Jessica Shriver, MA, MS, 123 Lawrence St #1, Clinton, MA 01510. E-mail: jessica.e.shriver{at}gmail.com

Parents of Children With Medical Complexity Are Essential Health Care Personnel

* Abbreviations: CDC — : Centers for Disease Control and Prevention CMC — : children with medical complexity COVID-19 — : coronavirus disease 2019 The coronavirus disease 2019 (COVID-19) pandemic has created a national and global crisis. The United States has invested tremendous effort and resources to fast track severe acute respiratory syndrome coronavirus 2 vaccines from conception to market in 1 year, an amazing scientific achievement. Public health experts are now leading the distribution of COVID-19 vaccines. The Centers for Disease Control and Prevention (CDC) recommends that health care personnel be offered COVID-19 vaccination during the early phases of distribution. Health care personnel are broadly defined and include emergency medical service personnel, nurses and nursing assistants, physicians, technicians, therapists, dentists, dental hygienists and assistants, phlebotomists, pharmacists, students and trainees, contractual staff, dietary and food services staff, environmental services staff, and administrative staff. We strongly recommend that parents and family caregivers (collectively referred to as parents in this article) of children with medical complexity (CMC) be included in the early phases of vaccine distribution because they serve as essential frontline health care personnel. CMC have significant chronic health conditions that involve multiple organ systems, substantial health service needs, major functional limitations, and high health resource use. They have high levels of medical fragility, technology dependencies (tracheostomies, ventilators, feeding tubes, intrathecal baclofen infusion systems, and others), and psychosocial complexities. We identify CMC as those who have ≥3 organ systems affected (≥3 Feudtner … Address correspondence to Nancy A. Murphy, MD, FAAP, FAAPMR, Division of Pediatric Physical Medicine & Rehabilitation, Department of Pediatrics, School of Medicine, University of Utah, 81 North Mario Capecchi Dr, Salt Lake City, UT 84113. E-mail: nancy.murphy{at}hsc.utah.edu

Medical Device Workarounds in Providing Care for Children With Medical Complexity in the Home.

Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs. We conducted 30 contextual inquiry interviews with families of CMC in homes. Interviews were recorded, transcribed, and analyzed for barriers and workarounds specific to medical device usage through a directed content analysis. We used observation notes and photographs to confirm and elaborate on interview findings. We identified 4 barriers to using medical devices in the home: (1) the quantity and type of devices allotted do not meet family needs, (2) the device is not designed to be used in locations families require, (3) device use is physically or organizationally disruptive to the home, and (4) the device is not designed to fit the user. We also identified 11 categories of workarounds to the barriers. Families face many barriers in using medical devices to care for CMC. Our findings offer rich narrative and photographic data revealing the ways in which caregivers work around these barriers. Future researchers should explore the downstream effects of these ubiquitous, necessary workarounds on CMC outcomes toward developing interventions that optimize device use for families.

Decision-Making for Children with Medical Complexity: The Role of the Primary Care Pediatrician.

Families of children with medical complexity (CMC) face many types of health-related decisions. These decisions vary in magnitude of consequences, degree of risk, time scale, degree of tradeoffs, degree of uncertainty, degree of linkage with other decisions, and reversibility. There are many influences on decision-making, including evidence, hopes, and values. Primary care pediatricians are in a unique position to assist families of CMC with decision-making. Pediatric clinicians have an opportunity to establish a trusting relationship with a family over time and to understand the family's values, beliefs, and preferences during periods of relative health and stability. This allows primary care pediatricians to support families in decision-making by helping to clarify their values and goals and apply those values to the decision at hand. [Pediatr Ann. 2020;49(11):e473-e477.].

Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity

Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reproductive planning. Conventional genetic testing strategies for CMC are often costly, time consuming, and ultimately unsuccessful. To evaluate the analytical and clinical validity of genome sequencing as a comprehensive diagnostic genetic test for CMC. In this cohort study of the prospective use of genome sequencing and comparison with standard-of-care genetic testing, CMC were recruited from May 1, 2017, to November 30, 2018, from a structured complex care program based at a tertiary care pediatric hospital in Toronto, Canada. Recruited CMC had at least 1 chronic condition, technology dependence (child is dependent at least part of each day on mechanical ventilators, and/or child requires prolonged intravenous administration of nutritional substances or drugs, and/or child is expected to have prolonged dependence on other device-based support), multiple subspecialist involvement, and substantial health care use. Review of the care plans for 545 CMC identified 143 suspected of having an undiagnosed genetic condition. Fifty-four families met inclusion criteria and were interested in participating, and 49 completed the study. Probands, similarly affected siblings, and biological parents were eligible for genome sequencing. Genome sequencing was performed using blood-derived DNA from probands and family members using established methods and a bioinformatics pipeline for clinical genome annotation. The primary study outcome was the diagnostic yield of genome sequencing (proportion of CMC for whom the test result yielded a new diagnosis). Genome sequencing was performed for 138 individuals from 49 families of CMC (29 male and 20 female probands; mean [SD] age, 7.0 [4.5] years). Genome sequencing detected all genomic variation previously identified by conventional genetic testing. A total of 15 probands (30.6%; 95% CI 19.5%-44.6%) received a new primary molecular genetic diagnosis after genome sequencing. Three individuals had novel diseases and an additional 9 had either ultrarare genetic conditions or rare genetic conditions with atypical features. At least 11 families received diagnostic information that had clinical management implications beyond genetic and reproductive counseling. This study suggests that genome sequencing has high analytical and clinical validity and can result in new diagnoses in CMC even in the setting of extensive prior investigations. This clinical population may be enriched for ultrarare and novel genetic disorders. Genome sequencing is a potentially first-tier genetic test for CMC.

The Daunting Problem of Medical Complexity and Housing Instability.

* Abbreviations: CMC — : child or children with medical complexity CSHCN — : children with special health care needs SSI — : Supplemental Security Income For children with medical complexity (CMC) and technology dependence, living at home requires well-qualified caregivers and an environment that is clean, safe, accessible, and spacious enough for medical equipment and supplies. Unfortunately, securing suitable housing can be prohibitively expensive for families of CMC who experience financial hardship. According to the National Survey of Children with Special Health Care Needs (CSHCN), among parents of more complex CSHCN, 57% stated that the child’s health caused financial problems, and 54% stated that a family member stopped working because of the child’s health.1 The rising price and short supply of homes has resulted in a widespread lack of affordable housing,2 which further stresses tight family budgets. CMC are significantly more likely than other children to require health services and hospital admission. Their medical needs result in missed work days and lost wages for their parents, creating a shortfall that can make paying rent or mortgage or utility bills more difficult. Although housing instability has negative consequences for all children, families of CMC face unique challenges. Poor-quality housing can impact medical equipment and symptoms; parents report mice chewing through gastrostomy tubes or respiratory symptoms worsening due to mold from a leaky roof. Lack of electricity due to faulty wiring or nonpayment of utility bills can threaten the lives of CMC who are technology dependent. Living … Address correspondence to Rebecca R. Seltzer, MD, MHS, Department of Pediatrics, School of Medicine, Johns Hopkins University, David M. Rubenstein Child Health Building, 200 N Wolfe St, Room 2060, Baltimore, MD 21287. E-mail: rseltze2{at}jhmi.edu

Compassion and connectedness as motivational drivers in the care of children with medical complexity.

Employing a cross-sectional qualitative descriptive design, using individual, semi-structured interviews collected from primary care and specialty clinicians who routinely care for children with medical complexity (CMC) in a largely rural area in central Virginia, this study aimed to better understand the current state of care, the motivations, and barriers for expansion of care for CMC in a semi-rural academic hospital center. Five themes emerged describing the current practice of the participants: (1) complexities of care, (2) compassion and empathy for families, (3) limited resources, (4) essential nature of coordination and teamwork, and (5) proximity to care. Each of the five themes that emerged from our interviews present both challenges and rewards. The theme of compassion for families of CMC is seen as a key potential motivational driver for expansion and reorganization of clinical care for CMC.

The Pediatric Home Health Care Process: Perspectives of Prescribers, Providers, and Recipients.

Children with medical complexity (CMC) often require pediatric home health care (PHHC) to meet their daily intensive care needs. Pediatricians are central to planning, implementing, and maintaining quality PHHC for CMC, yet a comprehensive road map for this process is lacking. With this national study, we aim to fill that gap. Semistructured interviews were conducted with parents and professionals from the 10 US Health Resources and Services Administration regions. Parents were recruited via advocacy groups for families of CMC; professionals with experience with PHHC for CMC were identified by using purposive and snowball sampling. Interview transcripts were qualitatively analyzed for themes. A comprehensive process of prescribing, providing, and maintaining PHHC requires 5 steps: identifying needs, investigating options, developing plans of care, initiating services, and navigating evolving needs. The success of the PHHC process is built on knowledge, anticipation, and early identification of needs; communication; care-coordination infrastructure; skilled home health providers; and the parent-provider relationship. Many CMC require PHHC to live safely outside of the hospital. Although the PHHC process involves multiple steps and participants, pediatricians' understanding of the process is the foundation of PHHC success. Fostering interagency relationships, increasing longitudinal care coordination, and investing in the PHHC infrastructure may reduce the burden placed on families and CMC as they navigate the complex process of PHHC.