Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions.

Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captured in medical records. The purpose of this study was to characterize current medical record documentation practices around psychosocial distress among children with rare or life-limiting chronic conditions and their families. Medical records for patients with rare or life-limiting chronic conditions (n = 60) followed by a pediatric complex care program were reviewed. Study team members extracted both structured data elements (e.g., diagnoses, demographic information) and note narratives from the most recent visit with a clinician in the program. Psychosocial topics were analyzed using a mixed quantitative (i.e., frequency counts of topics) and qualitative approach. Topics related to psychosocial distress that were documented in notes included child and parent emotional problems, parent social support, sibling emotional or physical problems, family structure (e.g., whether parents were together), and financial concerns. However, 35% of notes lacked any mention of psychosocial concerns. Although examples of psychosocial concerns were included in some notes, none were present in over one-third of this sample. For both patients with rare or life-limiting chronic conditions and their caregivers, more active elicitation and standard documentation of psychosocial concerns may improve the ability of healthcare providers to identify and intervene on psychosocial concerns and their risk factors.

Adaptations of an Integrated Behavioral Health Program During COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic has consistently been described as an "unprecedented" global health crisis. While the focus has been primarily on the medical and economic impact of the pandemic, psychological sequelae are anticipated. Primary care is the main point of access for mental health care in the United States, making it the ideal locale to provide psychological services for a larger proportion of the population than traditional mental health care settings. The aim of this paper is to describe how our multi-state, multi-site integrated primary care program adapted and applied cognitive behavioral therapy in the context of COVID-19. Access to mental health care was disrupted despite burgeoning mental health concerns, necessitating novel approaches to providing care. A stepped-care approach was implemented within our primary care practice, which consisted of a combination of low-intensity, high-yield stress management and resiliency building resources and cognitive behavioral therapy that were delivered flexibly based on patient preference, technological capabilities, state ordinances, insurance coverage, and institutional policies. The lessons learned from this experience can inform other integrated primary care clinics in responding to the current and future pandemics.