Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity.

CONTEXT: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement. OBJECTIVES: To describe the skills that caregivers developed as they gained experience making medical decisions. METHODS: Eligible caregivers had a child who met referral criteria for their centre's Complex Care program for >1 year, were adults responsible for their child's medical decisions, and spoke English or a language with an available interpreter. We followed a semistructured interview guide to ask caregivers to describe and reflect on two challenging medical decisions that they made for their child-one early and one recent. Guided by interpretive description, we identified and refined themes in an iterative process. RESULTS: We conducted 15 interviews with 16 parents (14 [88%] women, two [13%] men) of a child with medical complexity (aged 1-17 years). Parents described 1) becoming more adept at managing decisional information, 2) recognizing the influence of the decision's context, 3) building stronger relationships with providers, and 4) becoming more effective at guiding their child's care as a decision-maker. As parents built these skills, they developed a greater sense of agency and confidence as decision-makers. CONCLUSION: Parents of children with medical complexity change how they approach decision making over time as they acquire relevant skills. These findings can inform the development of interventions to support skill-building among new caregivers.

Clinical characteristics of children with severe neurologic impairment: A scoping review.

OBJECTIVE: The aim of this study is to extrapolate the clinical features of children with severe neurologic impairment (SNI) based on the functional characteristics and comorbidities described in published studies. METHODS: Four databases were searched. We included studies that describe clinical features of a group of children with SNI (≥20 subjects <19 years of age with >1 neurologic diagnosis and severe functional limitation) using data from caregivers, medical charts, or prospective collection. Studies that were not written in English were excluded. We extracted data about functional characteristics, comorbidities, and study topics. RESULTS: We included 102 studies, spanning 5 continents over 43 years, using 41 distinct terms for SNI. The terms SNI and neurologic impairment (NI) were used in 59 studies (58%). Most studies (n = 81, 79%) described ≥3 types of functional characteristics, such as technology assistance and motor impairment. Studies noted 59 comorbidities and surgeries across 10 categories. The most common comorbidities were related to feeding, nutrition, and the gastrointestinal system, which were described in 79 studies (77%). Most comorbidities (76%) were noted in <10 studies. Studies investigated seven clinical topics, with "Gastrointestinal reflux and feeding tubes" as the most common research focus (n = 57, 56%). The next most common topic, "Aspiration and respiratory issues," included 13 studies (13%). Most studies (n = 54, 53%) were retrospective cohorts or case series; there were no clinical trials. CONCLUSIONS: Despite the breadth of described comorbidities, studies focused on a narrow set of clinical topics. Further research is required to understand the prevalence, clinical impact, and interaction of the multiple comorbidities that are common in children with SNI.

Validation of Neurologic Impairment Diagnosis Codes as Signifying Documented Functional Impairment in Hospitalized Children.

OBJECTIVE: To assess the performance of previously published high-intensity neurologic impairment (NI) diagnosis codes in identification of hospitalized children with clinical NI. METHODS: Retrospective study of 500 randomly selected discharges in 2019 from a freestanding children's hospital. All charts were reviewed for 1) NI discharge diagnosis codes and 2) documentation of clinical NI (a neurologic diagnosis and indication of functional impairment like medical technology). Test statistics of clinical NI were calculated for discharges with and without an NI diagnosis code. A sensitivity analysis varied the threshold for "substantial functional impairment." Secondary analyses evaluated misclassified discharges and a more stringent definition for NI. RESULTS: Diagnosis codes identified clinically documented NI with 88.1% (95% confidence interval [CI]: 84.7, 91) specificity, and 79.4% (95% CI: 67.3, 88.5) sensitivity; negative predictive value (NPV) was 96.7% (95% CI: 94.8, 98.0), and positive predictive value (PPV) was 49% (95% CI: 42, 56.1). Including children with milder functional impairment (lower threshold) resulted in NPV of 95.7% and PPV of 77.5%. Restricting to children with more severe functional impairment (higher threshold) resulted in NPV of 98.2% and PPV of 44.1%. Misclassification was primarily due to inclusion of children without functional impairments. A more stringent NI definition including diagnosis codes for NI and feeding tubes had a specificity of 98.4% (95% CI: 96.7-99.3) and sensitivity of 28.6% (19.4-41.3). CONCLUSIONS: All scenarios evaluated demonstrated high NPV and low-to-moderate PPV of the diagnostic code list. To maximize clinical utility, NI diagnosis codes should be used with strategies to mitigate the risk of misclassification.