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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Developing a Sustainable Care Delivery Payment Model for Children With Medical Complexity.

Children with medical complexity (CMC) are a small but growing population representing <1% of all children while accounting for >30% of childhood health care expenditure. Complex care is a relatively new discipline that has emerged with goals of improving CMC care, optimizing CMC family function, and reducing health care costs. The provision of care coordination services is a major function of most complex care programs. Unfortunately, most complex care programs struggle to achieve financial sustainability in a predominately fee-for-service environment. The article describes how 2 programs in Wisconsin worked with their state Medicaid payer through a Centers for Medicare and Medicaid Services Health Care Innovation Award to develop a sustainable complex care payment model, and the value the payment model is currently bringing to stakeholders. Key elements of the process included: Developing a relationship between payer and clinicians that allowed for an understanding of each's viewpoint, use of an accepted clinical service model, and an effort to measure cost of care for the service provided supported by time-study methodology.

Partnering with Parents of Children with Medical Complexity: A Framework for Engaging Families for Practice Improvement.

The role of patients and families has evolved over the years, from being viewed as entities who were told what to do, to consumers of health services, to being central to health system design and clinical decision-making. When designing health care practices and programs to be patient- and family-centered, we believe that parents of children with medical complexity (CMC) bring valuable viewpoints and experiences to the table. Good health and functional outcomes for CMC and their families are dependent on active family engagement with their health care partners. We apply the Patient Engagement in Redesigning Care Toolkit (PERCT) model to describe the experience of complex care programs with engaging families at various levels of program design and function, including strengths and pitfalls experienced with each PERCT category. Operationalizing the health care system to treat patients and families as equal stakeholders is necessary if we want to succeed in a patient-centered, value-based environment. [Pediatr Ann. 2020;49(11):e467-e472.].

Resource Utilization Associated with Extracardiac Co-morbid Conditions Following Congenital Heart Surgery in Infancy.

Congenital heart disease (CHD) is often associated with chronic extracardiac co-morbid conditions (ECC). The presence of ECC has been associated with greater resource utilization during the operative period; however, the impact beyond hospital discharge has not been described. This study sought to understand the scope of chronic ECC in infants with CHD as well as to describe the impact of ECC on resource utilization after discharge from the index cardiac procedure. IRB approved this retrospective study of infants <1 year who had cardiac surgery from 2006 and 2011. Demographics, diagnoses, procedures, STAT score, and ECC were extracted from the medical record. Administrative data provided frequency of clinic and emergency room visits, admissions, cumulative hospital days, and hospital charges for 2 years after discharge from the index procedure. Data were compared using Mann-Whitney Rank Sum Test with p < 0.05 considered significant. ECC occurred in 55% (481/876) of infants. Median STAT score was higher in the group with ECC (3 vs. 2, p < 0.001). Resource utilization after discharge from the index procedure as defined by median hospital charges (78 vs. 10 K, p < 0.001 and unplanned hospital days 4 vs. 0, p < 0.001) was higher in those with ECC, and increased with the greater number of ECC, even after accounting for surgical complexity. STAT score and the presence of multiple ECC were associated with higher resource utilization following the index cardiac surgical procedure. These data may be helpful in deciding which children might benefit from a cardiac complex care program that partners families and providers to improve health and decrease healthcare costs.

Health Services and Health Care Needs Fulfilled by Structured Clinical Programs for Children with Medical Complexity.

OBJECTIVE: To describe family-reported health service needs of children with medical complexity (CMC) and to assess which needs are more often addressed in a tertiary care center-based structured clinical program for CMC. STUDY DESIGN: Mailed survey to families of CMC enrolled in a structured-care program providing care coordination and oversight at 1 of 3 children's hospitals. Outcomes included receipt of 14 specific health service needs. Paired t tests compared unmet health care needs prior to and following program enrollment. RESULTS: Four hundred forty-one of 968 (46%) surveys were returned and analyzed. Respondents reported their children had a mean age of 7 (SD 5) years. A majority of respondents reported the child had developmental delay (79%) and feeding difficulties (64%). Of the respondents, 56% regarded the primary care provider as the primary point of contact for medical issues. Respondents reported an increase in meeting all 14 health services needs after enrollment in a tertiary care center-based structured clinical program, including primary care checkups (82% vs 96%), therapies (78% vs 91%), mental health care (34% vs 58%), respite care (56% vs 75%), and referrals (51% vs 83%) (all P < .001). CONCLUSIONS: Tertiary care center-based structured clinical care programs for CMC may address and fulfill a broad range of health service needs that are not met in the primary care setting.

Impact of caring for children with medical complexity and high resource use on family quality of life.

PURPOSE: This study examined the impact of caring for children with medical complexity (CMC) and high resource use on family quality of life (QoL). METHODS: Families of CMC enrolled in a complex care program completed the PedsQL Family Impact module (PedsQL FIM) and Healthcare Satisfaction module (PedsQL HCS) at enrollment then 1 and 2 years after enrollment. Tertiary center resource utilization and staff care coordination time were collected for the two years. RESULTS: PedsQL FIM scores were low at enrollment and did not improve over time. Social Functioning, Worry, and Daily Activities were the lowest domains. PedsQL HCS scores were higher at enrollment, but also failed to improve over the two years. Changes in resource use were not associated with changes in PedsQL FIM or HCS scores. Staff care coordination time was highest for patients with ≥ 10 hospital days per year. CONCLUSION: CMC families' low QoL did not appear to be related to healthcare satisfaction or a shift from inpatient to outpatient resource use. Less staff support for families of CMC who spent more time at home may have contributed to their continued low QoL. Further study is required to identify causes of and strategies for improving the low QoL of families of CMC.