Pediatrician perspectives on barriers and facilitators to discharge instruction comprehension and adherence for parents of children with medical complexity.

BACKGROUND: High rates of posthospitalization errors are observed in children with medical complexity (CMC). Poor parent comprehension of and adherence to complex discharge instructions can contribute to errors. Pediatrician views on common barriers and facilitators to parent comprehension and adherence are understudied. OBJECTIVE: To examine pediatrician perspectives on barriers and facilitators experienced by parents in comprehension of and adherence to inpatient discharge instructions for CMC. DESIGN, SETTINGS, AND PARTICIPANTS: We conducted a qualitative, descriptive study of attending pediatricians (n = 20) caring for CMC in inpatient settings (United States and Canada) and belonging to listservs for pediatric hospitalists/complex care providers. We used purposive/maximum variation sampling to ensure heterogeneity (e.g., hospital, region). MAIN OUTCOME AND MEASURES: A multidisciplinary team designed and piloted a semistructured interview guide with pediatricians who care for CMC. Team members conducted semistructured interviews via phone or video call. Interviews were audiorecorded and transcribed. We analyzed transcripts using content analysis; codes were derived a priori from a conceptual framework (based on the Pediatric Self-Management Model) and a preliminary transcript analysis. We applied codes and identified emerging themes. RESULTS: Pediatricians identified three themes as barriers and facilitators to discharge instruction comprehension and adherence: (1) regimen complexity, (2) access to the healthcare team (e.g., inpatient team, outpatient pediatrician, home nursing) and resources (e.g., medications, medical equipment), and (3) need for a family centered and health literacy-informed approach to discharge planning and education. Next steps include the assessment of parent perspectives on barriers and facilitators to discharge instruction comprehension and adherence for prents of CMC and the development of intervention strategies.

Management of Discharge Instructions for Children With Medical Complexity: A Systematic Review.

CONTEXT: Children with medical complexity (CMC) are at risk for adverse outcomes after discharge. Difficulties with comprehension of and adherence to discharge instructions contribute to these errors. Comprehensive reviews of patient-, caregiver-, provider-, and system-level characteristics and interventions associated with discharge instruction comprehension and adherence for CMC are lacking. OBJECTIVE: To systematically review the literature related to factors associated with comprehension of and adherence to discharge instructions for CMC. DATA SOURCES: PubMed/Medline, Embase, Cochrane Central Register of Controlled Trials, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Web of Science (database initiation until March 2023), and OAIster (gray literature) were searched. STUDY SELECTION: Original studies examining caregiver comprehension of and adherence to discharge instructions for CMC (Patient Medical Complexity Algorithm) were evaluated. DATA EXTRACTION: Two authors independently screened titles/abstracts and reviewed full-text articles. Two authors extracted data related to study characteristics, methodology, subjects, and results. RESULTS: Fifty-one studies were included. More than half were qualitative or mixed methods studies. Few interventional studies examined objective outcomes. More than half of studies examined instructions for equipment (eg, tracheostomies). Common issues related to access, care coordination, and stress/anxiety. Facilitators included accounting for family context and using health literacy-informed strategies. LIMITATIONS: No randomized trials met inclusion criteria. Several groups (eg, oncologic diagnoses, NICU patients) were not examined in this review. CONCLUSIONS: Multiple factors affect comprehension of and adherence to discharge instructions for CMC. Several areas (eg, appointments, feeding tubes) were understudied. Future work should focus on design of interventions to optimize transitions.

Pediatric Resident Communication of Hospital Discharge Instructions.

OBJECTIVE: Suboptimal provider-parent communication contributes to poor parent comprehension of pediatric discharge instructions, which can lead to adverse outcomes. Residency is a critical window to acquire and learn to utilize key communication skills, potentially supported by formal training programs or visual reminders. Few studies have examined resident counseling practices or predictors of counseling quality. Our objectives were to (1) examine pediatric resident counseling practices and (2) determine how formal training and presence of discharge templates with domain-specific prompts are associated with counseling. METHODS: We conducted a cross-sectional survey of a convenience sample of residents in the American Academy of Pediatrics Section on Pediatric Trainees. Outcomes included resident self-report of frequency of (1) counseling in domains of care and (2) use of health literacy-informed counseling strategies (pictures, demonstration, Teach Back, Show Back) (6-point scales; frequent = often/usually/always). Predictor variables were (1) formal discharge-related training (e.g., lectures) and (2) hospital discharge instruction template with space for individual domains. Logistic regression analyses, utilizing generalized estimating equations when appropriate to account for multiple domains (adjusting for resident gender, postgraduate year), were performed. KEY RESULTS: Few residents (N = 317) (13.9%) reported formal training. Over 25% of residents infrequently counsel on side effects, diagnosis, and restrictions. Resident reported use of communication strategies was infrequent: drawing pictures (24.1%), demonstration (15.8%), Teach Back (36.8%), Show Back (11.4%). Designated spaces in instruction templates for individual domains were associated with frequent domain-specific counseling (adjusted odds ratio [aOR] 4.1 [95% confidence interval: 3.5-4.8]). Formal training was associated with frequent Teach Back (aOR 2.6 [1.4-5.1]) and Show Back (aOR 2.7 [1.2-6.2]). CONCLUSIONS: Lack of formal training and designated space for domain-specific instructions are associated with suboptimal counseling at discharge by pediatric residents. Future research should focus on determining the best mechanisms for teaching trainees communication skills and optimizing written instruction templates to support verbal counseling. [HLRP: Health Literacy Research and Practice. 2023;7(4):e178-e186.].

PLAIN LANGUAGE SUMMARY: Pediatric residents infrequently counsel about several important domains of care or use health literacy-informed counseling strategies. Resident receipt of formal training in communication practices and presence of written instruction templates are associated with higher quality counseling. Future research is needed to determine how to better support trainees in learning how to provide high quality and effective communication with parents.

Brief Resolved Unexplained Event: Not Just a New Name for Apparent Life-Threatening Event.

OBJECTIVES: This study aimed to evaluate patients who presented to the pediatric emergency department with an apparent life-threatening event (ALTE) to (1) determine if these patients would meet the criteria for brief resolved unexplained event (BRUE), a new term coined by the American Academy of Pediatrics in May, 2016; (2) risk stratify these patients to determine if they meet the BRUE low-risk criteria; and (3) evaluate outcomes of patients meeting the criteria for BRUE. METHODS: We conducted a retrospective chart review of patients who presented to a large urban academic center pediatric emergency department with an ALTE from January 2013 to May 2015 (before the publication of the BRUE guideline). Children ≤12 months of age were identified by the International Classification of Diseases, Ninth/Tenth Revision. Two physician reviews were performed to determine if patients met the ALTE diagnostic criteria. Data were then extracted from these charts to complete objectives. RESULTS: Seventy-eight patients met the diagnostic criteria for ALTE. Only 1 of those patients met the diagnostic criteria for BRUE, but not for low-risk BRUE. This patient underwent an extensive inpatient evaluation and was eventually discharged after monitoring with a benign diagnosis. Most patients did not meet the criteria for BRUE because the event was not unexplained. CONCLUSIONS: Only 1 patient who presented to the ED with ALTE met the criteria for BRUE, and this patient did not meet the low-risk criteria. This study corroborates previous research on BRUE and continues to highlight the importance of conducting a thorough history and physical examination on all patients presenting to the ED with concerning events.

Characteristics of Hospitalized Children With SARS-CoV-2 in the New York City Metropolitan Area.

OBJECTIVES: To describe the characteristics of hospitalized children with severe acute respiratory syndrome coronavirus 2 in New York City metropolitan area. PATIENTS AND METHODS: This was a multicenter, retrospective cohort study at 4 hospitals comprising 82 hospitalized children (0-21 years) who tested positive for severe acute respiratory syndrome coronavirus 2 after symptoms and risk screening between March 1 and May 10, 2020. We subdivided patients on the basis of their admission to acute or critical care units and by age groups. Further subanalyses were performed between patients requiring respiratory support or no respiratory support. RESULTS: Twenty-three (28%) patients required critical care. Twenty-nine (35%) patients requiring respiratory support, with 9% needing mechanical ventilation, and 1 required extracorporeal support. All patients survived to discharge. Children with any comorbidity were more likely to require critical care (70% vs 37%, P = .008), with obesity as the most common risk factor for critical care (63% vs 28%, P = .02). Children with asthma were more likely to receive respiratory support (28% vs 8%, P = .02), with no difference in need for critical care (P = .26). Children admitted to critical care had higher rates of renal dysfunction at presentation (43% vs 10%, P = .002). CONCLUSIONS: Children with comorbidities (obesity and asthma in particular) were at increased risk for critical care admission and/or need for respiratory support. Children with renal dysfunction at presentation were more likely to require critical care.

Outcomes of Maternal-Newborn Dyads After Maternal SARS-CoV-2.

BACKGROUND AND OBJECTIVES: Infection with a novel coronavirus named severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has become a global pandemic. There are limited data describing the impact of SARS-CoV-2 infection on pregnant mothers and their newborns. The objective of this study is to describe characteristics and outcomes of maternal-newborn dyads with confirmed maternal SARS-CoV-2. METHODS: This was a multicenter, observational, descriptive cohort study with data collection from charts of maternal-newborn dyads who delivered at 4 major New York City metropolitan area hospitals between March 1 and May 10, 2020, with maternal SARS-CoV-2 infection. RESULTS: There were a total of 149 mothers with SARS-CoV-2 infection and 149 newborns analyzed (3 sets of twins; 3 stillbirths). Forty percent of these mothers were asymptomatic. Approximately 15% of symptomatic mothers required some form of respiratory support, and 8% required intubation. Eighteen newborns (12%) were admitted to the ICU. Fifteen (10%) were born preterm, and 5 (3%) required mechanical ventilation. Symptomatic mothers had more premature deliveries (16% vs 3%, P = .02), and their newborns were more likely to require intensive care (19% vs 2%, P = .001) than asymptomatic mothers. One newborn tested positive for SARS-CoV-2, which was considered a case of horizontal postnatal transmission. CONCLUSIONS: Although there was no distinct evidence of vertical transmission from mothers with SARS-CoV-2 to their newborns, we did observe perinatal morbidities among both mothers and newborns. Symptomatic mothers were more likely to experience premature delivery and their newborns to require intensive care.

Accuracy of Parent Perception of Comprehension of Discharge Instructions: Role of Plan Complexity and Health Literacy.

OBJECTIVE: Inpatient discharge education is often suboptimal. Measures of parents' perceived comprehension of discharge instructions are included in national metrics given linkage to morbidity; few studies compare parents' perceived and actual comprehension. We 1) compared parent perceived and actual comprehension of discharge instructions and 2) assessed associations between plan complexity and parent health literacy with overestimation of comprehension (perceive comprehension but lack actual comprehension). METHODS: Prospective cohort study of English/Spanish-speaking parents (n = 192) of inpatients ≤12 years old and discharged on ≥1 daily medication from an urban public hospital. We used McNemar's tests to compare parent perceived (agree/strongly agree on 5-point Likert scale) and actual comprehension (concordance of parent report with medical record) of instructions (domains: medications, appointments, return precautions, and restrictions). Generalized estimating equations were performed to assess associations between low parent health literacy (Newest Vital Sign score ≤3) and plan complexity with overestimation of comprehension. RESULTS: Medication side effects were the domain with lowest perceived comprehension (80%), while >95% of parents perceived comprehension for other domains. Actual comprehension varied by domain (41%-87%) and was lower than perceived comprehension. Most (84%) parents overestimated comprehension in ≥1 domain. Plan complexity (adjusted odds ratio 3.6; 95% confidence interval 2.9-4.7) and low health literacy (adjusted odds ratio 1.9; 1.3-2.6) were associated with overestimation of comprehension. CONCLUSIONS: Parental perceived comprehension of discharge instructions overestimated actual comprehension in most domains. Plan complexity and low health literacy were associated with overestimation of comprehension. Future interventions should incorporate assessment of actual comprehension and standardization of discharge instructions.

Discharge Instruction Comprehension and Adherence Errors: Interrelationship Between Plan Complexity and Parent Health Literacy.

OBJECTIVE: To examine associations between parent health literacy, discharge plan complexity, and parent comprehension of and adherence to inpatient discharge instructions. STUDY DESIGN: This was a prospective cohort study of English/Spanish-speaking parents (n = 165) of children ≤12 years discharged on ≥1 daily medication from an urban, public hospital. Outcome variables were parent comprehension (survey) of and adherence (survey, in-person dosing assessment, chart review) to discharge instructions. Predictor variables included low parent health literacy (Newest Vital Sign score 0-3) and plan complexity. Generalized estimating equations were used to account for the assessment of multiple types of comprehension and adherence errors for each subject, adjusting for ethnicity, language, child age, length of stay, and chronic disease status. Similar analyses were performed to assess for mediation and moderation. RESULTS: Error rates were highest for comprehension of medication side effects (50%), adherence to medication dose (34%), and return precaution (78%) instructions. Comprehension errors were associated with adherence errors (aOR, 8.7; 95% CI, 5.9-12.9). Discharge plan complexity was associated with comprehension (aOR, 7.0; 95% CI, 5.4-9.1) and adherence (aOR, 5.5; 95% CI, 4.0-7.6) errors. Low health literacy was indirectly associated with adherence errors through comprehension errors. The association between plan complexity and comprehension errors was greater in parents with low (aOR, 8.3; 95% CI, 6.2-11.2) compared with adequate (aOR, 3.8; 95% CI, 2.2-6.5) health literacy (interaction term P = .004). CONCLUSIONS: Parent health literacy and discharge plan complexity play key roles in comprehension and adherence errors. Future work will focus on the development of health literacy-informed interventions to promote discharge plan comprehension.

Parental Management of Discharge Instructions: A Systematic Review.

CONTEXT: Parents often manage complex instructions when their children are discharged from the inpatient setting or emergency department (ED); misunderstanding instructions can put children at risk for adverse outcomes. Parents' ability to manage discharge instructions has not been examined before in a systematic review. OBJECTIVE: To perform a systematic review of the literature related to parental management (knowledge and execution) of inpatient and ED discharge instructions. DATA SOURCES: We consulted PubMed/Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and Cochrane CENTRAL (from database inception to January 1, 2017). STUDY SELECTION: We selected experimental or observational studies in the inpatient or ED settings in which parental knowledge or execution of discharge instructions were evaluated. DATA EXTRACTION: Two authors independently screened potential studies for inclusion and extracted data from eligible articles by using a structured form. RESULTS: Sixty-four studies met inclusion criteria; most (n = 48) were ED studies. Medication dosing and adherence errors were common; knowledge of medication side effects was understudied (n = 1). Parents frequently missed follow-up appointments and misunderstood return precaution instructions. Few researchers conducted studies that assessed management of instructions related to diagnosis (n = 3), restrictions (n = 2), or equipment (n = 1). Complex discharge plans (eg, multiple medicines or appointments), limited English proficiency, and public or no insurance were associated with errors. Few researchers conducted studies that evaluated the role of parent health literacy (ED, n = 5; inpatient, n = 0). LIMITATIONS: The studies were primarily observational in nature. CONCLUSIONS: Parents frequently make errors related to knowledge and execution of inpatient and ED discharge instructions. Researchers in the future should assess parental management of instructions for domains that are less well studied and focus on the design of interventions to improve discharge plan management.