Published online June 1, 2005
PEDIATRICS Vol. 115 No. 6 June 2005, pp. 1536-1546 (doi:10.1542/peds.2004-1149)
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The Impact of Severe Respiratory Syncytial Virus on the Child, Caregiver, and Family During Hospitalization and Recovery

Nancy Kline Leidy, PhD*, Mary Kay Margolis, MPH, MHA*, James P. Marcin, MD, MPH{ddagger}, Jennifer A. Flynn, MSPH*, Lorry R. Frankel, MD§, Susan Johnson, RN, MPH||, Diane Langkamp, MD, MPH and Eric A. F. Simoes, MD, DCH#

* MEDTAP Institute at UBC, Bethesda, Maryland
{ddagger} University of California, Davis, Children's Hospital, Sacramento, California
§ Stanford University at Packard Children's Hospital, Stanford, California
|| University of Alabama, Birmingham, Alabama
Akron Children's Hospital, Akron, Ohio
# University of Colorado Health Sciences Center and the Children's Hospital, Denver, Colorado


   ABSTRACT
TOP
 ABSTRACT
METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Objective. To quantify the magnitude of child, caregiver, and family distress associated with hospitalization for severe respiratory syncytial virus (RSV) and the posthospitalization recovery period.

Design. A prospective study of 46 RSV-hospitalized infants and children ≤30 months of age with a history of prematurity (gestational age of ≤35 weeks) and 45 age-matched control subjects was performed. RSV group data were gathered during hospitalization and on days 4, 14, 21, and 60 after discharge; control group data were collected at the end of the RSV season and 60 days thereafter.

Main Outcome Measures. RSV severity; caregiver's rating of the child's health (100-point rating) and functional status (Functional Status IIR); caregiver health, stress (7-point rating), and anxiety (Spielberger State Anxiety Inventory); and family health and functioning (Family Adaptability and Cohesion Evaluation Scale II) were recorded.

Results. The mean age of the sample was 10.2 months; 51% of the subjects were male. The average duration of hospital stay for the RSV group was 5.8 ± 8 days. Most patients received supplemental oxygen (76%) and were monitored for apnea (60%). The mean age of the caregivers (93% mothers) was 29 years. During hospitalization, the RSV-infected patients' health and functional status were significantly poorer than those of control subjects. Caregivers of RSV-infected children reported more stress, greater anxiety, poorer health, and poorer family health and functioning. As long as 60 days after discharge, caregivers of RSV-infected children reported the children's health as significantly poorer and were personally more anxious, compared with control subjects.

Conclusions. RSV-related hospitalization creates significant distress for infants and children, caregivers, and families, with some effects extending as long as 60 days after discharge.

Key Words: respiratory syncytial virus • hospitalization • distress • anxiety • caregiver • burden of illness

Abbreviations: RSV, respiratory syncytial virus

Respiratory syncytial virus (RSV) is the most common viral cause of lower respiratory tract infections among infants and young children, infecting nearly all children by the age of 3 years.1–3 Known risk factors for the development of RSV include lower socioeconomic status, crowded living conditions, passive exposure to cigarette smoke, presence of older siblings in the home, and day care attendance.4,5 Premature infants with or without bronchopulmonary dysplasia or chronic lung disease, infants <6 months of age, and infants who have congenital heart disease or are immunocompromised are at highest risk for contracting the virus and having complicated or fatal infections.6–11

The hallmark of severe RSV disease is involvement of the lower respiratory tract, which is manifest clinically as bronchiolitis or pneumonia. Approximately 1 to 2% of infected children require hospitalization for severe disease,12 leading to as many as 125000 hospitalizations in the United States each year.13 In fact, from 1997 to 1999, RSV bronchiolitis was the leading cause of hospitalizations among children in the United States,14 with the majority (70–80%) involving infants <1 year of age.15 The economic burden in direct hospital charges for RSV pneumonia-associated episodes in the United States has been estimated to be more than $300000000 (1998) annually.

The morbidity and mortality rates associated with RSV-related acute lower respiratory tract infections are well known. Patients are generally hypoxemic, and as many as 20% experience apnea.16 Supplemental oxygen is often necessary, and mechanical ventilation and/or treatment in an intensive care setting may be required.17 It has been estimated that between 180 and 510 RSV-associated deaths occur annually in the United States, the majority among infants.18 For patients who survive, there is a chance they will be rehospitalized because of respiratory disease6,19 and/or experience recurrent wheezing and asthma in subsequent years.20–22

Clearly, RSV can have a significant impact on the physical health of the child. Little is known, however, about the magnitude of distress experienced by these children, their parents, and their families during hospitalization and the extent to which this distress extends into the posthospitalization recovery period. During the acute stage of illness, these children not only are symptomatic but also are undergoing diagnostic and treatment-related procedures, are experiencing disruption in their sleep-rest patterns and normal daily routines, and are separated from family members and the home environment, all of which are likely to contribute to high levels of distress. There is empirical evidence suggesting that parents of hospitalized infants and children experience distress as well, marked by intense emotional reactions as they observe their young child's physical illness and behavioral and emotional responses in an acute care or intensive care environment.23–28 Parental anxiety, role alterations, missed work days, emotional and behavioral concerns of siblings, and upheaval in the family routine may also lead to family instability and a reduction in family functioning during a child's hospitalization.29

It is likely that the impact of RSV-related hospitalization on children, parents, and family does not stop at hospital discharge. Conway and Phillips30 found that children hospitalized for whooping cough and measles were emotionally upset not only during admission but also for several weeks after discharge. High rates of new family health problems and changed behavior patterns were noted as long as 9 weeks after a child's discharge from the hospital for a first-time admission to the PICU.31 The objective of this study was to quantify the magnitude of patient, parental, and family distress associated with hospitalization for RSV and to determine the extent to which this distress extends into the posthospitalization recovery period.


   METHODS
TOP
 ABSTRACT
 METHODS
RESULTS
 DISCUSSION
 REFERENCES
 
Study Design and Procedures
This was a prospective study of infants and children hospitalized for RSV and age-matched control subjects. Patients and control subjects were recruited into the study by clinical investigators and coordinators at 5 hospitals in the United States over the course of 2 RSV seasons. For the RSV group, infants and children ≤30 months of age with a history of prematurity (gestational age at birth of ≤35 weeks) who were admitted to the hospital with a laboratory-confirmed diagnosis of RSV-related acute lower respiratory tract infection and their primary female caregivers were eligible to participate. Patients who had received any form of RSV prophylaxis, were admitted for reasons other than RSV-related acute lower respiratory tract infection, had cerebral palsy, or had caregivers who could not speak English were not included.

To estimate the magnitude of distress experienced by the RSV-infected patients and their families during hospitalization and to understand the trajectory of recovery after hospital discharge, data were also gathered from a reference comparison group. This group consisted of chronologic age-matched infants and children from the same geographic area with a history of prematurity and their primary female caregivers. Potential participants were identified by the study coordinator through a review of PICU/NICU (level III) and newborn nursery records for children born in the study site hospital and were invited to participate in the study. Age matching was based on date of birth, ±10% for infants up to 1 year of age and ±5% for those 12 to 30 months of age. Patients with a history of RSV, an RSV-related illness or RSV prophylaxis, cerebral palsy, or a non-English-speaking caregiver were not included.

Data for the RSV group were gathered within 48 hours after admission to the hospital and through telephone interviews with female caregivers at days 4, 14, 21, and 60 days after hospital discharge. Data for the control group were gathered through telephone interviews at a control "baseline" time and 60 days thereafter, to account for developmental changes that occur normally among infants, children, caregivers, and families over a 2-month period. The protocol was approved by institutional review boards at each of the 5 clinical sites and at the survey research center conducting the telephone interviews. All participants provided informed consent before participation in the study.

Measures
The instruments used to evaluate child, caregiver, and family distress are summarized in Table 1. The Severity Index and the Parental Stressor and Parental Concern scales were used to characterize distress in the RSV group during the acute hospitalization period only. All other measures were administered to both groups at each observation.


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  		TABLE 1. Study Measures

 
Demographic and Clinical Data
Demographic data, including the child's date of birth, gestational age at birth, race/ethnicity, number of siblings, and attendance at day care and the caregiver's age, relationship to the child, marital status, educational level, employment status, and household income were gathered from each caregiver. Clinical data were gathered through chart audit. Clinical data included preexisting conditions, route of admission for this hospitalization, duration of admission, use of mechanical ventilation, use of supplemental oxygen, presence of apnea monitoring, complications during hospitalization, and duration of hospitalization.

Measures of Child Distress
Severity Index
Severity/acuity was estimated through an ordinal severity index based on duration of hospital stay, location of hospital stay (PICU versus no PICU), need for mechanical ventilation, need for supplemental oxygen, need for apnea monitoring, and confirmed apnea episodes during hospitalization.32–34 Similar to methods used previously, patients were assigned a score of 1 for each indicator of severity, with the exception of PICU admission and use of mechanical ventilation, each of which was assigned a score of 2. Scores were summed to yield a severity index with a possible range of 1 to 8, with higher scores indicating more severe RSV disease.

Functional Status IIR
The Functional Status IIR evaluates functional health status among infants and children 0 to 16 years of age. The Functional Status IIR is composed of 14 core questions that are asked regardless of the child's age, with additional scales for stage-specific evaluation. Each question in the Functional Status IIR consists of 2 parts. The first asks whether the child performs a specified activity or behavior. For activities with limitations, the respondent is asked if this is attributable "fully," "partly," or "not at all" to the child's health problem. Scores range from 0 to 100, with higher scores indicating better functioning. The instrument has been shown to have good internal consistency, reliability, and discriminant, construct, and content validity in each age group.35

Global Rating of Stress
The caregivers rated the child's current level of stress on a 7-point Likert-type scale from 1 (not stressful at all) to 7 (very stressful).36

Health State
Both the study coordinator and caregiver rated the child's current health state on a continuous scale with values ranging from 0 (the worst imaginable health) to 100 (the best imaginable health).37 Caregivers also rated the child's preillness health state.

Measures of Caregiver (Mother) Distress
Parental Stressor Scale
The Parental Stressor Scale assesses 7 dimensions of the hospital environment, ie, child's appearance (3 items), sights and sounds (4 items), procedures (7 items), child's behavioral and emotional responses (10 items), anomie or behavior of professional staff (4 items), professional staff communication (5 items), and parental role (6 items). Caregivers rate each item on a 5-point Likert-type scale from 1 (not stressful) to 5 (extremely stressful). A 0 option is provided for "not experienced." Higher scores indicate greater stress. The instrument has shown evidence of internal consistency, reliability, and construct validity.38

Parental Concerns Scale
This measure evaluates 4 areas of concern for parents of critically ill infants and children, ie, financial concerns (2 items), parenting concerns (7 items), concerns about the child's experiences (10 items), and concerns about the child's future (3 items). Parents rate each item on a 5-point Likert-type scale, to reflect the extent to which they worry about the issues. Higher scores indicate greater concern. Subscale scores are calculated as the mean of the appropriate subscale items.

Spielberger State-Trait Anxiety Inventory
The 40-item State-Trait Anxiety Inventory and the State-Trait Anxiety Inventory-Revised have been used extensively to assess overall stress reactions (state anxiety) and personal stress traits, ie, prone to stress reactions (trait anxiety),39,40 and have been used previously to assess parental anxiety with a child's hospitalization.41,42 State anxiety is assessed with 20 items geared to the caregiver's present feelings, answered on a 4-point Likert-type scale from 1 (not at all) to 4 (very much). The remaining 20 items assess trait anxiety and are geared to how the caregiver generally feels. These items are also answered on a 4-point Likert-type scale from 1 (almost never) to 4 (almost always). Higher scores indicate greater anxiety.

Global Rating of Stress
The caregivers rated their own current level of stress on a 7-point Likert-type scale.

Global Rating of Health
The caregivers also evaluated their own health on a scale of 0 to 100.

Measures of Family Distress
Family Adaptability and Cohesion Evaluation Scale II
The Family Adaptability and Cohesion Evaluation Scale II is a 30-item measure evaluating parental perceptions of family adaptability (ability to change, 15 items) and cohesion (emotional bonds, 15 items).43 Parents rate each item on a 5-point Likert-type scale from 1 (almost never) to 5 (almost always). Higher scores on the adaptability subscale indicate greater flexibility, whereas higher scores on the cohesion subscale indicate greater family connection. The Family Adaptability and Cohesion Evaluation Scale II has been used widely to evaluate family functioning.44–49

Global Rating of Health
Caregivers rated the health state of their family unit on a scale of 0 to 100.

Statistical Analyses
Demographic characteristics of the RSV and control groups were compared with {chi}2 and matched t test procedures. Student's t tests were used to compare selected stress-related variables according to the caregiver's level of education. Finally, Pearson product-moment correlations were used to assess the relationship between child, caregiver, and family distress during the child's hospitalization for RSV and the extent to which the severity of the child's illness contributed to caregiver and family distress.

To compare levels of distress in RSV cases and control cases over time, repeated-measures, linear, mixed-effects models were estimated with restricted maximal likelihood procedures. The fixed-effects model parameters were defined to estimate a "cell means."50 This is a linear model that has a separate parameter (1 degree of freedom) for each combination of group (case or control) and day (days 1 and 60 for control subjects and days 1, 4, 21, and 60 for case subjects). Because case subjects were assessed more frequently than control subjects, the variance was modeled with a heterogeneous, compound, symmetric, variance-covariance matrix for the estimation. Estimates of differences between the case and control groups for specific pairs of days were prepared from the fixed-effects portion of the linear model. Distress variables for the RSV group during hospitalization and at days 4, 14, and 21 after discharge were compared with day 1 data for the control group, whereas day 60 data for the RSV group were compared with day 60 data for the control group. No adjustments were included for multiplicity, and statistical significance was 2-sided and was defined as P < .05. All computations were performed with SAS version 8 software (SAS Institute, Cary, NC).


   RESULTS
TOP
 ABSTRACT
 METHODS
 RESULTS
DISCUSSION
 REFERENCES
 
Sample
Forty-six caregiver/child dyads with infants and children hospitalized for treatment of RSV and 46 caregiver/child dyads with control subjects were enrolled in the study. One caregiver in the control group elected to withdraw before the first interview. The 2 groups were equivalent in terms of age, gender, gestational age, race/ethnicity, and number of siblings in the family (Table 2). Consistent with known risk factors, RSV-infected patients were more likely to attend day care, have had a prior hospitalization, and have a sibling with an acute illness (P < .05 for all). Most (93%) of the caregivers were the children's biological mothers; their mean age was 29 years (Table 3). More caregivers in the RSV group worked outside the home, and there was a trend toward lower household income in this group, although the difference was not statistically significant.


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  		TABLE 2. Demographic Characteristics of Infants and Children

 

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  		TABLE 3. Demographic Characteristics of Female Caregiver

 
The mean duration of hospital stay for the RSV group was 5.8 days, with a range of 1 to 45 days. More than 75% were treated with oxygen therapy, and most (60%) were monitored for apnea (Table 4). The mean severity score was 2.5 ± 2.0, on a scale of 1 to 8.


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  		TABLE 4. Clinical Characteristics of RSV Group

 
Distress During Hospitalization
Indicators of child, caregiver, and family distress for the RSV group during the child's hospitalization (baseline) and recovery (days 4–60), juxtaposed with control group values obtained for the 2 time periods, are shown in Figures 1 through 3. Infants and children hospitalized for RSV exhibited significantly poorer functional status, higher levels of stress, and poorer overall health during hospitalization than did age-matched control subjects (P < .001) (Fig 1). Concomitantly, the female caregivers of RSV-infected children reported higher levels of anxiety (P < .001), greater stress (P < .001), and poorer overall health (P < .05) than did their counterparts in the control group (Fig 2). Families of infants and children with RSV also exhibited poorer functioning, with significantly lower levels of cohesion (P < .01), adaptability (P < .001), and overall family health (P < .001) than control families (Fig 3).


Figure 1
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  		Fig 1. Child's distress during hospitalization and postdischarge recovery from RSV, compared with control subjects. Descriptive means and standard errors (SEM) are shown; statistical significance is based on a mixed-model analysis of variance, comparing cases at baseline through day 21 with controls at time 1 (Baseline) and cases at day 60 with controls at time 2 (day 60). * P < .05; ** P ≤ .01; *** P ≤ .001; **** P ≤ .0001. FS IIR indicates Functional Status IIR.

 

Figure 3
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  		Fig 3. Family distress during child's hospitalization and postdischarge recovery from RSV, compared with control subjects. Descriptive means and standard errors (SEM) are shown; statistical significance is based on a mixed-model analysis of variance, comparing cases at baseline through day 21 with controls at time 1 (Baseline) and cases at day 60 with controls at time 2 (day 60). * P < .05; ** P ≤ .01; *** P ≤ .001; **** P ≤ .0001. Significant improvements in family health were observed in the control group (P < .05). FACES II indicates Family Adaptability and Cohesion Evaluation Scale II.

 

Figure 2
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  		Fig 2. Caregiver distress during child's hospitalization and postdischarge recovery from RSV, compared with control subjects. Descriptive means and standard errors (SEM) are shown; statistical significance is based on a mixed-model analysis of variance, comparing cases at baseline through day 21 with controls at time 1 (Baseline) and cases at day 60 with controls at time 2 (day 60). * P < .05; ** P ≤ .01; *** P ≤ .001; **** P ≤ .0001. STAI indicates State-Trait Anxiety Inventory.

 
For caregivers of the children with RSV, the mean score on the Parental Stressor Scale during the child's hospitalization was 3.06 ± 0.79 and the mean score on the Parental Concerns Scale was 3.05 ± 0.67. On the Parental Stressor Scale, watching the child undergo procedures and changes in parental roles, such as concerns about not taking care of the child herself, not being able to be with the crying child, or not seeing the child when she wanted, were among the most stressful experiences (mean Parental Stressor Scale scores of 3.78 ± 1.08 and 3.28 ± 1.18 for the 2 subscales). On the Parental Concerns Scale, mothers were most concerned about parenting (3.44 ± 0.72) and the child's experiences during the hospitalization (3.13 ± 0.76).

A relationship was found between caregiver's level of education and stress indicators. Caregivers with a high school education or less reported significantly higher levels of concern than did those with at least some college education (Parental Concerns Scale scores of 3.29 vs 2.84; P = .02). These caregivers also reported higher levels of stress (5.78 vs 4.90; P < .05) and less cohesive family relationships (Family Adaptability and Cohesion Evaluation Scale II cohesion scores of 67.00 vs 60.09; P = .03) during the hospitalization period. Correlations between indicators of distress demonstrate that, the more severe the child's illness, the higher the caregiver's stress and anxiety and the poorer the family's cohesiveness and overall health (Table 5).


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  		TABLE 5. Pearson Product-Moment Correlations Between Indicators of Child, Caregiver, and Family Distress at Baseline

 
Postdischarge Recovery
Most of the infants and children who had been hospitalized for RSV were experiencing wheeze (n = 21 [54%]), cough (n = 28 [72%]), and nasal congestion (n = 26 [67%]) at day 4 after discharge. Six patients (15%) were receiving supplemental oxygen, 26 (67%) were receiving nebulizer or aerosol treatment, and 6 were receiving some form of dietary supplement. At day 60, 42% of the caregivers in the RSV-infected group reported that the child was experiencing episodes of wheezing, in contrast to 16% of the control subjects.

Posthospitalization recovery trajectories for infant and child, caregiver, and family distress are shown in Figures 1 through 3. Stress levels of the RSV-infected children and their caregivers declined substantially during the immediate postdischarge period, with no significant differences between the RSV and control groups at day 4. However, the children's functional status and overall health continued to be significantly poorer than those of control subjects (P < .001) at day 4. Caregivers of RSV-infected infants and children were also significantly more anxious (P < .05) and family cohesion and health (P < .05) were poorer, compared with the control group, at day 4.

The functional status of the infants and children hospitalized for RSV continued to be significantly poorer than that of the control subjects through the second week after hospital discharge (day 14). In addition, families continued to have problems with adaptability, a trend that continued through day 21. The children's overall health, as rated by the caregivers, was significantly poorer than that of age-matched control subjects throughout the duration of the study.


   DISCUSSION
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
REFERENCES
 
The results of this study provide insight into the nature and magnitude of distress experienced by infants and children during hospitalization for treatment of severe RSV and during the postdischarge recovery period. RSV-related hospitalization creates significant distress for infants and children, caregivers, and families. A number of these effects extend as long as 60 days after discharge.

During the acute phase of illness, the stress levels of these hospitalized children were very high and their functional status was approximately one half that of healthy children (48.0 vs 99.0 for the age-matched control subjects and 98.0 for well children <1 year of age). The relatively poor health and functional status continued after hospital discharge. As long as 60 days after discharge, caregiver ratings of the children's health continued to be significantly poorer than those for healthy control subjects. The results of this study also suggest that the distress associated with hospitalization for RSV is not limited to the child. The primary female caregivers, 93% of whom were mothers, exhibited significant distress during the child's hospitalization, with remarkably high levels of anxiety.

Demographic and clinical characteristics of patients enrolled in this study and the clinical course of the disease were consistent with previous studies of children with RSV. Children in the RSV group were more likely to attend day care, to have a prior hospitalization, and to have ≥1 siblings with a concurrent acute illness, all of which are recognized as risk factors for RSV. The mean duration of hospitalization and the proportions of patients who received oxygen, were monitored for apnea, and were admitted for intensive care were also consistent with previous reports of the course of this illness among young children.

State anxiety levels of caregivers were significantly higher than those of control subjects, whose values were consistent with published normative values for this age and gender. In fact, the anxiety levels of the caregivers of RSV-infected children were higher than values reported for general medical/surgical patients and were similar to those of mothers with premature infants in the NICU.51 The more severe the child's illness and the poorer the health and functional status, the greater was the caregiver's level of distress during the hospitalization phase of illness.

Data from the Parental Stressor and Parental Concerns scales indicated that caregivers found the procedures performed on the children, the alteration of their role as a parent (an inability to protect, help, or hold the child), and their child's responses (seeing the child frightened, crying, or confused) to be among the most stressful aspects of the experience. The mean Parental Stressor Scale score was consistent with that of mothers of children in the PICU of a children's hospital.52 Most concerning to the caregivers were the parenting roles (as indicated by high scores on questions such as "What could I have done to prevent this?" and "What can I do for my child now?") and the child's experiences (such as pain and understanding of events). Scores on the Parental Concerns Scale were also consistent with those reported for mothers of children in the PICU (3.05 vs 3.14).

Like that of the children, caregiver distress continued after discharge. Although a substantial decline in caregiver anxiety was observed by day 4 after the child's discharge from the hospital, levels continued to be elevated. Two months after discharge, the anxiety level of the RSV caregivers was significantly higher than that of the control subjects.

Most of the caregivers in this study were married or living with a life partner and nearly all had additional children at home. Data suggested that family health and functioning were compromised significantly during the acute phase of illness, while the child was hospitalized, as well as during the postdischarge recovery period. Family cohesion and adaptability were significantly poorer in the RSV group than in the control group, with values similar to those found for families with asthma.

We acknowledge the small sample size of this study. The significant differences between the groups are even more impressive because of the relatively small sample size. The study was conducted only at children's hospitals and therefore may not have applicability to all RSV-infected children. However, we think these results hold true for children hospitalized because of severe, RSV-related, acute lower respiratory tract infections. There were significant differences between the groups, with RSV-infected patients being significantly more likely to attend day care, have had a prior hospitalization, and have a sibling with an acute illness. We expected differences between the groups in these areas, because they are known risk factors for RSV. However, it is possible that the risk factors for RSV also contribute to the stress differences observed for these groups.

The results of this study suggest that clinicians should be aware of the heightened stress experienced by mothers of hospitalized RSV-infected children and should consider methods to allay maternal anxiety during the course of the child's hospitalization. Specifically, a social services consultation during the child's hospitalization may be warranted and may alleviate some of the mother's anxiety. Because medical procedures performed on the child were rated as a high-level stressor by the caregivers, clinicians might reconsider parental observation of the procedure or consider other methods of reducing caregiver distress during observation, although additional study is needed in this area. Follow-up clinic visits offer an opportunity for clinicians to query mothers about their concerns and to address the stress and anxiety they may be experiencing. It may also be worthwhile to consider scheduling a follow-up appointment sooner than regularly scheduled if the mother and child seem to be exhibiting stress and anxiety. Recognition and consideration of preexisting stressors for caregivers and families may help alleviate the impact of RSV illness. However, additional research is needed to identify the pertinent stressors. This study was not designed to explore the reasons underlying the posthospitalization recovery trajectories; additional research is warranted to identify how the distress is alleviated during the posthospitalization recovery period and to determine methods of identifying those who do not recover as well.

Little is known about the burden of RSV for the child, parent, and family. This study quantified the acute distress and recovery trajectory associated with an RSV-induced hospitalization among children with a history of prematurity, their caregivers, and their families. The results suggest that children, caregivers, and families experience significant distress that extends into the postdischarge period. Although recovery is nearly complete 2 months after hospitalization, primary caregivers continue to perceive their children's health as poorer and report higher levels of anxiety than do caregivers of age-matched control subjects.


   ACKNOWLEDGMENTS
 
Funding was provided by MedImmune, Inc.

Study sites and clinic staff members participating in this study were as follows: University of California, Davis, and Mercy Health Care (Sacramento, CA): James P. Marcin, MD, MPH, and Elizabeth Radsliff, RN; University of Alabama (Birmingham, AL): Susan Johnson, RN, MPH, and Leslie Harrington, BSN, CCRC; University of Colorado Health Sciences Center and the Children's Hospital (Denver, CO): Eric A.F. Simoes, MD, DCH, and Heather Small, PA; Stanford University at Packard Children's Hospital (Palo Alto, CA): Lorry R. Frankel, MD, Laura McKae Sperry, RN, and Kristin Adams; Children's Research Institute (Columbus, OH): Diane Langkamp, MD, MPH, and Melissa Bowen, RN; Creighton University Medical Center and St Joseph's Hospital (Omaha, NE): Steven Chartrand, MD (deceased), Patsy Nowatzke, RN, Cozett Oldham, RN, Susan Weston, RN, and Jeanne Fox, RN.

We acknowledge MedImmune for financial support; Joanne Youngblut, PhD, of Florida International University, Shelah Leader, PhD, of MedImmune, and Mark Sorrentino, MD, for comments and recommendations during protocol development; the physicians and clinical coordinators at each of the study sites for hard work and dedication to the project; Battelle Survey Research Center for diligence in conducting telephone interviews; and Timothy Baker, Chris Thompson, Tanika Williams, and M.A. O'Donnell of MEDTAP Institute for contributions to study implementation, SAS programming, and preparation of the final report. We also acknowledge the contribution of Chris Barker, PhD, formerly of MEDTAP, in the statistical analyses. Finally, thanks go to the caregivers of RSV-infected and healthy infants and children for their time and energy in responding to our questions.


   FOOTNOTES
 
Accepted Oct 18, 2004.

Address correspondence to Nancy Kline Leidy, PhD, MEDTAP Institute at UBC, 7101 Wisconsin Ave, Suite 600, Bethesda, MD 20814. E-mail: leidy{at}medtap.com

No conflict of interest declared.


   REFERENCES
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 

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