Development and validation of the caregiver Burden from infant home NGT care instrument.

OBJECTIVE: To design and validate an age and condition-specific health status instrument to best reflect the parental experience caring for these children with complex needs and home Nasogastric Tube (NGT) placement. STUDY DESIGN: Combined Qualitative and Quantitative design, testing and implementation for item production and reduction, followed by formal validation by evaluating validity, reliability, and establishing a clinically meaningful change score. SETTINGS: Tertiary care, multi-disciplinary aerodigestive center. PARTICIPANTS: All caregivers whose infant met criteria for eligibility for discharge home from the NICU or Special Care Nursery (SCN) with NGT in place were offered inclusion in this group. Intervention/Exposure: Structured qualitative interviews of these caregivers to explore and define these concepts and domains, to item generate and then reduce, and then psychometric analyses. METHODS: Structured, moderated qualitative interviews with parents/caregivers of children who have undergone home NGT care of their children for item creation, design, and then reduction. Reliability was assessed by Cronbach alpha analysis. Construct validity and clinically meaningful change score was assessed using various query methods. MAIN OUTCOME MEASURES: Cronbach's alpha to assess reliability, a priori hypotheses validity analyses, and minimally important clinical difference calculation. RESULTS: Scaled scores of this condition specific instrument ranged from 14 to 74 where higher scores indicate better QOL related to managing the NGT. Cronbach's alpha with all 14 items was 0.93. Validity was assessed by a self-assessment question to discriminate between change (95% CI: 8.5-14.1; p < 0.0001) as well as by other comparators to identify the instrument's ability to discriminate among populations where parents felt a difference in experience. The minimally important difference was calculated at 18 points. CONCLUSION: This represents the initial validation of the first condition and age-specific health status instrument to assess parent experience of caring for infants requiring a home NGT for dysphagia.

The Effectiveness of Slightly Thick Liquids for Improving Swallowing in Bottle-Fed Children With Aerodigestive Concerns.

Purpose: Strategies for facilitating safe and functional bottle feeding in children with dysphagia include selecting nipples that reduce flow rate, pacing, altered positioning, and thickening liquid consistencies. We aimed to determine the impact of slightly thick liquids on swallowing through retrospective review of a convenience sample of clinical videofluoroscopic swallowing studies (VFSS) from 60 bottle-fed children (21 boys and 39 girls, mean age of 9.9 months) referred due to suspected aspiration. Method: Eligible VFSS exams were those in which the child swallowed both thin and slightly thick barium (40% w/v Varibar barium) using the same nipple. VFSS sequences (i.e., uninterrupted portions of the VFSS recording) were randomly assigned in duplicate for rating by trained raters; discrepancies were resolved by consensus. Parameters measured included number of swallows/sequence, sucks/swallow, swallow and sequence duration, number and timing of penetration or aspiration events, laryngeal vestibule closure integrity, and pharyngeal residue. Chi-square tests, linear mixed-model analyses of variance, and Wilcoxon signed-ranks tests identified consistency effects. Results: There were no aspiration events in these recordings. Slightly thick liquids resulted in significantly fewer penetration events (p < .05), increased sucks/swallow, fewer swallows/sequence, and longer swallow and sequence durations. The number of children with ≥ 1 sequence showing pyriform sinus residue was significantly higher with slightly thick liquids. Conclusions: Slightly thick liquids can be effective in reducing penetration in bottle-fed children with dysphagia. However, slightly thick liquids may also lead to a safety-efficiency trade-off, with increased risk of pyriform sinus residue. Thickening for children with dysphagia should be considered only when other approaches are not effective. Overthickening should be avoided to limit negative impact on swallowing efficiency.

Examining Health Conditions, Impairments, and Quality of Life for Pediatric Feeding Disorders.

By understanding health conditions, impairments, and impact on quality of life for pediatric feeding disorders, assessment and treatment approaches can target multiple levels of health-related domains that improve child health and well-being. The purpose of this study was to characterize medical diagnoses and feeding impairments for children with feeding disorders; examine child quality of life and caregiver impact; and compare quality of life differences between children with feeding disorders and children with other conditions. A cross-sectional study was conducted in the Greater Boston Area, between October 2017 and June 2018. Fifty children with a feeding disorder diagnosis, ages 2-5 years, were enrolled. Demographic and clinical data were abstracted from the electronic health record to characterize medical diagnoses and impairments. Parents completed the Pediatric Quality of Life Generic Core Scales 4.0 (PedsQL) and the Feeding/Swallowing Impact Survey (FS-IS) to understand child quality of life and caregiver impact. We calculated descriptive statistics across the medical diagnosis and impairment groups, and for the surveys. Children presented with heterogeneous medical diagnoses and feeding impairments. We found a mean (SD) total score of 72.82(19.21) on the PedsQL and 2.33(0.89) on the FS-IS demonstrating that children with feeding disorders presented with poor quality of life and their caregivers were negatively impacted by their feeding difficulties. By understanding medical diagnoses, impairments, and quality of life, assessment and treatment methods can be tailored to children's specific needs, as well as address the overall wellbeing of children and their families.

Aspiration does not mean the end of a breast-feeding relationship.

OBJECTIVE: Breastfeeding is widely recommended as optimal nutrition for infants. However, there are no known publications on the impact of prandial aspiration of breast milk fed infants with dysphagia. The goal of this study was to assess pulmonary outcomes in infants with dysphagia who were given medical clearance for intake of breast milk. METHODS: This retrospective cohort study included review of 80 infants examined between August 2016 to March 2021. Patients were evaluated by an interdisciplinary team of providers in a tertiary pediatric aerodigestive center. Patient inclusion criteria included a VFSS with documented aspiration or penetration with thin liquids. Participants met inclusion criteria if given medical clearance for intake of breast milk despite aspiration risk. Pulmonary health was monitored for three months following medical clearance for the consumption of breast milk. Pulmonary illness was defined as development of bronchiolitis, wheezing, unexplained stridor during feeding, croup, pneumonia, or persistent bacterial bronchitis requiring medical intervention. RESULTS: Forty-three males (54%) and 37 females (46%) enrolled in the study with an age range of 1 month-6 months corrected age. Mean age at initial VFSS was 3.6 months. Twenty-six out of 80 (32.5%) had a report of a mild cough but did not require intervention. Eight out of 80 (10%) received a diagnosis of a pulmonary illness. Seventy-two out of 80 (90%) did not report pulmonary illness. CONCLUSION: This pilot study reveals that the majority (90%) of this single institution, small sample size cohort of breast milk fed infants with documented oropharyngeal dysphagia remained healthy despite continued intake of breast milk. Prospective investigation is warranted to follow pulmonary health outcomes longitudinally and a head to head comparative study would be helpful to identify whether there were indeed significant changes to pulmonary health according to differential feeding regimens offered and followed.

Modified external approach to the pediatric cricopharyngeal myotomy: A case series.

OBJECTIVE: To assess the success of a modified approach to external pediatric cricopharyngeal myotomy in children with inappropriate upper esophageal sphincter relaxation as determined by video fluoroscopic swallow study (VFSS) and pediatric manometry findings. METHODS: This is a case series in which hospital records of all patients who underwent a modified external approach to pediatric cricopharyngeal myotomy 2017 to 2019 were reviewed at a single institution. The primary outcome measure was post-operative diet and presence of aspiration/penetration on post-operative VFSS. RESULTS: A total of 7 patients underwent modified external approach to pediatric cricopharyngeal myotomy. The average age of the child at the time of surgery was 5.6 (±3.7) years. The average duration (SD) of surgery was 90 (±30) minutes and no complications were observed. 6 of 7 patients (86%) demonstrated an improvement in swallow function after the procedure. The single child who did not was suffering from a posterior fossa tumor which was resected and radiated, which likely made their dysphagia multi-factorial. Although no pediatric normative data exists for upper esophageal sphincter pressure, we observed an average decrease in UES residual pressure of 8.5 (±15.1) mmHg and an average decrease in mean UES pressure of 21.2 (±35.1) mmHg. CONCLUSIONS: The modified external approach to the pediatric cricopharyngeal myotomy appears to be a safe and efficient procedure with no apparent complications to date. However, further longitudinal data is needed to formally evaluate the efficacy of this procedure when treating pediatric cricopharyngeal achalasia.