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Rationale Severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) causes long‐term pulmonary sequelae in adults, but little is known about pulmonary outcomes in pediatrics. Objective(s) The aim of this study was to describe long‐term subjective and objective pulmonary abnormalities after SARS‐CoV‐2 infection in pediatric populations. Methods Single‐center, retrospective cohort of patients seen in post‐coronavirus disease 2019 (COVID‐19) pulmonary clinic in 2021. Subjects evaluated had persistent pulmonary symptoms 4 weeks or more after initial infection. Clinical testing included a 6‐min walk test (6MWT), chest X‐ray, pre‐ and postbronchodilator spirometry, plethysmography, and diffusion capacity. Patients were followed 2‐to‐3‐months after the initial visit with repeat testing. The primary outcome was the presence of abnormal pulmonary function testing. Secondary measures included variables associated with pulmonary outcomes. Results Eighty‐two adolescents were seen at a median of 3.5 months postinfection, with approximately 80% reporting two or more symptoms at clinic presentation (cough, chest pain, dyspnea at rest, and exertional dyspnea). At follow‐up (~6.5 months) exertional dyspnea persisted for most (67%). Spirometry was normal in 77% of patients, but 31% had a positive bronchodilator response. No abnormalities were noted on plethysmography or diffusion capacity. Clinical phenotypes identified included inhaled corticosteroid responsiveness, paradoxical vocal fold motion disorder, deconditioning, and dysautonomia. Multivariable modeling demonstrated that obesity, anxiety, and resting dyspnea were associated with reduced 6MWT, while female sex and resting dyspnea were associated with higher Borg Dyspnea and Fatigues scores. Conclusions This is the largest study to date of pediatric patients with long‐term pulmonary sequelae post‐COVID‐19. Identified clinical phenotypes and risk factors warrant further study and treatment.

Lack of work experience and reliance on government health insurance at the time of transplant predict lower long-term work participation among LTx recipients with CF. By contrast, long-term employment outcomes were not negatively affected by comorbidities at or after transplantation in this cohort. Despite resolving some physiological obstacles to employment in patients with CF, LTx may introduce new socioeconomic barriers to employment.

Objectives Patient-generated health data (PGHD) are important for tracking and monitoring out of clinic health events and supporting shared clinical decisions. Unstructured text as PGHD (eg, medical diary notes and transcriptions) may encapsulate rich information through narratives which can be critical to better understand a patient’s condition. We propose a natural language processing (NLP) supported data synthesis pipeline for unstructured PGHD, focusing on children with special healthcare needs (CSHCN), and demonstrate it with a case study on cystic fibrosis (CF). Materials and Methods The proposed unstructured data synthesis and information extraction pipeline extract a broad range of health information by combining rule-based approaches with pretrained deep-learning models. Particularly, we build upon the scispaCy biomedical model suite, leveraging its named entity recognition capabilities to identify and link clinically relevant entities to established ontologies such as Systematized Nomenclature of Medicine (SNOMED) and RXNORM. We then use scispaCy’s syntax (grammar) parsing tools to retrieve phrases associated with the entities in medication, dose, therapies, symptoms, bowel movements, and nutrition ontological categories. The pipeline is illustrated and tested with simulated CF patient notes. Results The proposed hybrid deep-learning rule-based approach can operate over a variety of natural language note types and allow customization for a given patient or cohort. Viable information was successfully extracted from simulated CF notes. This hybrid pipeline is robust to misspellings and varied word representations and can be tailored to accommodate the needs of a specific patient, cohort, or clinician. Discussion The NLP pipeline can extract predefined or ontology-based entities from free-text PGHD, aiming to facilitate remote care and improve chronic disease management. Our implementation makes use of open source models, allowing for this solution to be easily replicated and integrated in different health systems. Outside of the clinic, the use of the NLP pipeline may increase the amount of clinical data recorded by families of CSHCN and ease the process to identify health events from the notes. Similarly, care coordinators, nurses and clinicians would be able to track adherence with medications, identify symptoms, and effectively intervene to improve clinical care. Furthermore, visualization tools can be applied to digest the structured data produced by the pipeline in support of the decision-making process for a patient, caregiver, or provider. Conclusion Our study demonstrated that an NLP pipeline can be used to create an automated analysis and reporting mechanism for unstructured PGHD. Further studies are suggested with real-world data to assess pipeline performance and further implications.

Objectives: Caregivers of infants with cystic fibrosis (CF) carry a heavy treatment burden for their child along with the inherent difficulties of raising an infant. This study investigated the impact of self-reported caregiver mental health diagnoses and social barriers during the 1st year of life on clinical outcomes. Methods: A retrospective chart review was conducted for infants seen in a large tertiary hospital CF clinic over a 5-year period. Baseline characteristics were collected, and documentation from physician and social work notes were reviewed. Demographics and clinical characteristics were compared by the presence or absence of self-reported mental health diagnoses, social barriers, and "emotional concern." Results: Analyses were conducted on 71 patients. Thirty-five percent of caregivers disclosed mental health diagnoses, 52% identified social barriers to care, and 55% reported feeling upset or fatigued. Having a caregiver with a self-reported mental health diagnosis was associated with tobacco smoke exposure (p < .001) and increased odds of hospitalizations (odds ratio [OR], 3.01; 95% confidence interval [CI], 1.49-6.06), emergency department/urgent care visits (OR, 3.17; 95% CI, 1.32-7.64), and longer lengths of stay (OR, 1.93; 95% CI, 1.69-2.20). Caregivers who expressed emotional concern had infants with significantly lower weight-for-length percentiles (p = .012). Discussion: Caregiver mental health and social barriers to care are important determinants to address as they may impact clinical outcomes in infants with CF. Identifying barriers and struggles early increases the likelihood that clinical teams can intervene and provide support. Further research into mental health and socioeconomic barriers faced by caregivers of infants with CF is crucial.

CF patients with Medicaid insurance have higher risk of death while awaiting LTx when compared to patients with Medicare or private insurance. The impact of insurance status on survival in this population begins before LTx and compounds the disparities previously observed in post-transplant outcomes.

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Pediatric transplant recipients experience barriers to social functioning, including participation in school and work, but our understanding of barriers to these activities is limited by insufficient data collection and standardization. Existing studies rely on cross-sectional surveys of transplant survivors that are subject to survivorship and nonresponse bias, or analyses of large registry data that lack detail on educational progress and work participation. We report our experience using the electronic medical record to retrospectively review work and educational attainment in this population, and identify specific barriers that were encountered and how they were addressed by the patient and care team. We reviewed current literature on post-transplant survey participation and compared questionnaires to our current documentation practice for tracking education and employment progress in the transplant recipient population. Based on this review, we discuss the possibility, barriers, and implications of conducting a standardized assessment to track social participation outcomes of transplantation.