Patient-Centered Outcomes in Bronchiolitis Free

This was a single-center, cross-sectional, observational survey study examining how hospital interventions in children hospitalized for bronchiolitis influenced patient-centered outcomes. The study was conducted at a 150-bed tertiary care children’s hospital from 2018 to 2022. Children who had bronchiolitis listed in their medical record’s problem list were identified, and their caregivers were approached on the anticipated day of discharge.

Participants included were parents or primary caregivers of a child aged 0 to 24 months hospitalized for bronchiolitis (with or without other comorbidities) who was being discharged from the hospital. Bronchiolitis was defined as any patient aged 0 to 24 months admitted with a constellation of symptoms including cough, congestion, increased work of breathing, and abnormal lung findings (eg, crackles, rhonchi, wheezing) who the treating clinicians diagnosed with bronchiolitis. Exclusion criteria were non–English- or non–Spanish-speaking caregivers based on the survey languages available.

Data were collected using a questionnaire, adapted from the previously validated survey, the IBHQ.¹  The survey was taken by caregivers of children hospitalized for bronchiolitis 1 to 28 days after discharge via a self-guided REDCap survey, a secure web platform for online surveys. The survey was available in English or Spanish. In addition to the questions asking caregivers to rank to what extent the hospitalization interfered with specific topics, the survey contained 10 demographic questions, 3 yes or no questions, and 4 free response questions. Four questions, if applicable to the caregiver, had a section to provide qualitative feedback. Question topics included decrease in patient appetite and to what degree that continued after hospitalization, difficulty holding the patient, interruption in bonding experienced, interruption in breastfeeding experienced, decrease in breast milk supply, decrease in caregiver sleep, disruption of household routine or organization, interruption in work schedule, decrease in income or severity of other financial issues resulting from hospitalization and to what degree that continued after hospitalization, negative effects on relationships between partners or spouses, and to what degree that continued after hospitalization.

The caregiver was asked to score the interference as either not at all (score = 1), somewhat (score = 2), very much (score = 3), or extremely (score = 4). Demographics were self-disclosed by the survey participant and participants were given the option to not answer.

The researchers conducted a retrospective chart review in which they extracted clinical data from Epic related to each child’s hospitalization of those who enrolled in the study. Data extracted included respiratory support required (positive pressure, HFNC, LFNC) and feeding support required (NG tube). At the study institution, HFNC is permitted on the floor at flows up to 2 L/kg, and patients requiring higher flow rates or positive pressure are only permitted in the PICU.

After all surveys were collected, the patients were split into level of support groups based on their support needs during hospitalization. These groups were decided by the authors after the data collection process and were optimized to have strong sample sizes within each group but comparable sample sizes between groups. We examined the distribution of level and combinations of interventions across patients and grouped interventions from lowest (eg, none) to highest (eg, positive pressure ventilation) with NG feeds being an additional layer of intervention considered. Level of support groups were defined as no support, low support (LFNC only or NG only), moderate support (HFNC without NG), high support (HFNC with NG support), and positive pressure (with or without NG support). There were no patients who required a maximum respiratory support of LFNC with NG tube support. Last, many patients received IVF as a supportive measure, but this intervention was not examined in this study.

For each of the 13 ranking questions using Likert-type ratings, we examined the distribution of data and then used the mean score (mean impact scores) to examine differences between level of support groups. The Shapiro-Wilk test was used to examine the normality of variables. Descriptive statistics (eg, analysis of variance) was used to examine the distribution of mean impact scores across level of support groups and whether the impact scores differed in a statistically significant way. Qualitative responses were examined by the authors independently using a descriptive analysis approach. Themes were identified and grouped by frequency of occurrence. Discrepancies in thematic analysis were resolved through discussion.

This study was approved by the university institutional review board (institutional review board identification: STUDY00017934) as a minimal risk study.

All participants identified themselves as the primary caretaker of the child while in the hospital. Most caregivers that participated were mothers (89%) and the remaining identified as father, grandmother, foster mother, or parent. Most participants self-identified as White (75%), with the second largest race being Hispanic or Latino (10%). Across the levels of support provided, we did not note any statistically significant differences by age, race, or level of education, with all comparisons P > .05 (Table 1). A total of 92 children were included in the study.

Respiratory support was needed for 72 (78%) patients. Patients requiring respiratory support needed either LFNC, HFNC, positive pressure, or a mix of these. Of the 72 patients requiring respiratory support, 10 (14%) received a maximum respiratory support of LFNC, 46 (64%) received a maximum respiratory support of HFNC, and 16 (22%) received a maximum respiratory support of positive pressure ventilation. While hospitalized, 46 (50%) patients used an NG tube for hydration or nutrition.

Examining mean impact scores between level of support groups, 3 of the 13 questions were found to have statistically significant results. The mean impact score for the difficult to hold variable had significant variation between the level of support groups, P = .003. For the question examining difficulty to bond, there was also a significant difference between the groups, P = .04. For the subset of children who were breastfeeding, there was a significant association between breastfeeding disruption and levels of support, P < .001 (Table 2). Mean plots demonstrate a visual representation of the mean impact scores between the level of support groups of the questions that were statistically significant (Fig 1). None of the other 10 questions’ mean impact scores had a statistically significant difference between the level of support groups.

Qualitative responses were not mandatory and were left by 80% of participants. Responses were left in both English and Spanish. The authors read through all qualitative responses and selected the below responses that regarded frequently touched upon themes.

The first qualitative prompt was regarding whether holding or bonding was interrupted. Tubes and wires were the most frequently mentioned factors commented on by caregivers when it came to holding and bonding with their child. One parent said, “The cords, leads, and tubing intimidated my husband and made it hard for him to hold him [the child] or carry him.” Another caregiver with similar sentiments reported, “he [the child] had a lot of wires, and I was afraid I would pull 1 out.” One family mentioned the HFNC specifically, saying, “The cannula for the high flow also pulled on his face causing discomfort for him and I.”

The second qualitative question assessed if specific therapies interfered with the care the patient’s caregiver wished to provide to the child. Several caregivers mentioned breastfeeding being interrupted specifically, “I breastfeed and like to hold my child while doing so. He was hooked up to so much medical equipment that I felt afraid to hold him for fear of dislodging something or causing harm to him.” Some responses specifically mentioned the NG tube as the cause of difficulty feeding, “The feeding tube got in the way because we weren't able to feed her normal and bond with her as much.”

The last free text question assessed if any specific therapy helped improve the care the patient’s caregiver could provide while in the hospital. Many caregivers mentioned oxygen support and NG tube support as therapies that helped them provide better care because they felt these things helped their child get better more quickly. One caregiver said, “The feeding tube helped him regain strength, which allowed me to eventually feed him again.”

The 2014 AAP clinical care guidelines for viral bronchiolitis explicitly call for emphasis on patient-centered outcomes in guiding future research.³  This project aimed to examine the impact of supportive care interventions in children hospitalized with bronchiolitis and their family as a step toward recentering patient-centered care.

We found that impact varied by level of support among children hospitalized with bronchiolitis, with significant impacts being in areas of caregiver holding, bonding, and breastfeeding. It is interesting to note that mean impact scores decrease between no support to low support but then increase in moderate support, again in high support, and again in positive pressure. This trend suggests that it may not be an increase in level of support that drives the difference, in which case we would see a complete linear increase as level of support increased. Instead, this may reflect the consequences of a specific piece of equipment. For example, an NG tube or LFNC may provide some degree of placebo effect that is seen with the addition of a supportive measure when comparing children on no support to low support. An alternative example is the HFNC equipment may interfere more with bonding than an NG tube, given the nature of the machine.

Previous studies have also demonstrated the patient and family impact of being hospitalized for bronchiolitis. Lapillonne et al developed the IBHQ.¹  This tool was used to explore the impact on caregivers of children hospitalized with bronchiolitis. These questionaries were scored with a scale from 0 (no impact) to 100 (highest impact), with the 3 highest scoring areas being fear for the future (66.6), sibling’s reaction (63.1), and impact on daily organization (62.7).¹  They did not examine how the score varied with severity of illness or interventions.

In 2004, Leidy et al showed that families of infants and children hospitalized with respiratory syncytial virus exhibited poorer functioning, with significantly lower levels of cohesion, adaptability, and overall family health than control families.¹⁰  These high stress levels were specifically related to watching the child undergo procedures and changes in the parent’s role in taking care of the child (eg, not being able to be with a crying child, not seeing the child at their convenience). Our study reflects this finding with qualitative data showing that specific therapies interfered with the care the patient’s caregiver wished to provide to the child. Most of which surrounded equipment (eg, HFNC, other “wires and tubes”) that made it difficult for families to hold and care for their infant. Additionally, quantitative data showed a statistically significant difference between patients with different levels of support when comparing how severely impacted caregivers felt regarding holding their child.

Our results demonstrated the patients who were identified to have higher level of support on retrospective review were more likely to experience interruption in breastfeeding. These results are similar to what has been reported by other studies in the past. Undesired weaning of breastfeeding has been identified as an adverse event of hospitalization for bronchiolitis.^1,12,13  In a study of 84 infants hospitalized for bronchiolitis, Heilbronner et al found that 17 patients stopped breastfeeding altogether, 12 switched from total breastfeeding to partial breastfeeding, and 14 reduced breastfeeding without stopping or switching.¹²  Further attention was then spent by Heilbronner et al to evaluate if various actions for breastfeeding promotion were taken (eg, training of caregivers, optimization of the equipment, promotion of breastfeeding to mothers), would breastfeeding interruption be as significant compared with the first study in which no promotion was implemented? After implementation of this promotion, the rate of decreased breastfeeding improved from 50% to 20%. The study recognized that the improvement in breastfeeding may have other origins but raises the possibility of decreasing unwanted breastfeeding weaning in infants hospitalized with bronchiolitis by easy promotion techniques.^12,13  This begs the question whether this type of education for caregivers surrounding all affected areas of care (eg, holding, bonding) could improve the severity of impact on caregivers of children hospitalized with bronchiolitis.

Carbonell-Estrany et al also solidified the importance of interactions between health care professionals and caregivers.⁹  Surveyed caregivers reported that the “need to be sure that clinical staff was aware of latest developments and improvements” was the highest ranked parental factor of 110 factors. Qualitative evidence in a small 10-parent study done by Montilla-Pérez et al supports this. One aspect of the study was exploring the parent’s “need to know” in which caregivers spoke about exchanging information about treatment and prognosis from medical professionals.¹⁴  This brings forward the question of whether the patient and caregiver experience could be improved by increasing interactions between caregivers and providers. Had these caregivers been reassured about the severity of their child’s illness, perhaps they would feel more comfortable holding their children and providing them with the care they wished to provide.

This study is limited by its single-center, small patient population sample size of 92 patients. Larger studies are needed to better separate groups into more specific interventions (ie, LFNC alone, LFNC with NG, NG alone). Having a sample size that allows more specific grouping would enable us to better understand if there is a specific intervention that affects the caregiver-child dyad the most. Additionally, although participants were allotted 28 days to complete the survey, the number of days from discharge when the survey was taken was not included in the data collection and was not taken into account when comparing reported experiences. Including the monitoring (eg, leads, pulse oximeter) in the assessment could also have an impact and could be measured because it likely is related to severity of illness. It is unclear how different levels of support relate to severity of illness and how severity of illness could be used as a balancing measure when comparing parent responses between levels of support. Several institutions use bronchiolitis scoring as part of their inpatient bronchiolitis protocol, and this may be helpful in determining severity of illness. However, these scoring tools are not standard between institutions and the lack of a universal tool to rank severity of illness in bronchiolitis is a major barrier to additional multicenter studies.

Another limitation to the study was demographic, and level of care information was not gathered on participants and families who fit inclusion criteria for the study but chose not to participate. It is possible the recruitment process caused a selection bias and this lack of data makes us unable to compare patient families who participated to patient families who did not participate. For example, >70% of participants were White and had some degree of college education or higher, and this may not be representative of all families with children hospitalized for bronchiolitis but rather the families who chose to participate.

The 2022 AAP Value in Inpatient Pediatrics national project, entitled “High Flow Interventions to Facilitate Less Overuse”, aimed to describe utilization of HFNC and reduce overuse.⁴  This study along with a few others aimed to decrease unnecessary use of HFNC.^15,16  In addition to this much-needed research is the need for research to determine if subsequent decrease in utilization of HFNC also changes the impact on caregivers of children hospitalized with bronchiolitis. While getting the right patients on HFNC and the wrong ones off may be the current hot topic for bronchiolitis, improving our understanding of how other interventions (eg, noninvasive positive pressure) impact care is also important and highlights the need to systematically measure these untoward effects. Further studies are needed examining if specific interventions (ie, transfer to ICU) or equipment (ie, HFNC) are associated with a greater degree of negative impact on families, exploring the role for caregiver education in mitigating the degree of negative impact, and comparing caregiver impact between institutions because there are major differences in practice between institutions when caring for patients with bronchiolitis.

Self-reported impact among caregivers of children hospitalized with bronchiolitis varied depending on the patient’s level of support, with significant impacts being in areas of caregiver bonding, caregiver holding, and breastfeeding.