PEDIATRICS Vol. 118 No. 5 November 2006, pp. 2101-2108 (doi:10.1542/peds.2006-1455)
ARTICLE |
Outcome at 6 Months After Admission for Pediatric Intensive Care: A Report of a National Study of Pediatric Intensive Care Units in the United Kingdom
a Health Services Research
b Health Economics and Decision Science
c Institute of General Practice, School of Health and Related Research, University of Sheffield, Sheffield, United Kingdom
d Intensive Care Unit, Royal Liverpool Children's Hospital, Liverpool, United Kingdom
e General Infirmary at Leeds, Leeds, United Kingdom
f Intensive Care National Audit and Research Centre, London, United Kingdom
g Department of Medicine, Children's Hospital Boston, Boston, Massachusetts
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONREFERENCES |
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OBJECTIVE. The goal was to measure, by using the Health Utilities Index, the health status of children 6 months after admission to PICUs in the United Kingdom.
METHODS. All PICUs in the United Kingdom were invited to participate. Children who were 
6 months of age at admission and were discharged alive from participating units during a 1-year period were eligible for this study. Children with completed consent forms who had survived to 6 months after admission received the Health Utilities Index questionnaire.
RESULTS. Admission data on 7214 admissions to 22 units were collected between March 2001 and February 2002. Of those patients, 6786 survived to unit discharge, and consent for follow-up contact was obtained for 2642. At 6 months after admission, the mortality rate was estimated at 11.1% and 2034 children were still alive and contactable. Of those children, Health Utilities Index questionnaires were returned by 1455. No impairment was indicated for 767, 951, 940, 919, 962, and 939 children with respect to the Health Utilities Index sensation, cognition, emotion, pain, mobility, and self-care attributes, respectively. The mean ± SE Health Utilities Index utility score was 0.73 ± 0.01, with 397 children (27.3%) in full health.
CONCLUSIONS. Death after pediatric intensive care in the United Kingdom is uncommon, making assessment of health status important. At 6 months after admission, there is significant morbidity. To assess the impact of strategies to improve or to optimize care on longer-term outcomes, standardized collection of data on preexisting comorbidities and illness severity is required.
Key Words: intensive care • outcome • quality of life • health status
Abbreviations: HUI—Health Utilities Index • PIM—Pediatric Index of Mortality • PRISM—Pediatric Risk of Mortality • PICOS—Pediatric Intensive Care Outcome Study
Pediatric intensive care activity has increased greatly over the past few decades, and the development of specialized PICUs, together with technologic advances, has contributed to improved survival rates for critically ill children.1 To date, studies comparing different aspects of clinical care, service delivery, or performance in pediatric intensive care have used predominantly mortality rates as the principal outcome measure.2–4 However, death before discharge from a PICU is a rare outcome (6.2%).5 Furthermore, a factor associated with reduced mortality rates is of debatable benefit if it is at the expense of increased severe, longer-term morbidities. Future prospects, with respect to both survival rates and health status, are uncertain, and developing outcome measures other than those based on mortality or survival rates is important. Morbidity may be as important as death in assessments of performance, new technology, treatments, service configurations, or policies.6 Within the United Kingdom, recommendations that morbidity as well as death should be considered have been expressed.7 Outcome measures should reflect quality of life, including morbidity, disability, and the functional health of the child after a period in intensive care.8–12
Some work on functional status at PICU discharge has been undertaken. A study of 2816 children admitted to a single PICU in the United States measured functional status at discharge from the unit, using a simple, 3-point, category scale, and found 62% of patients to be at the highest functional state.13 Another US study, using data on 11106 admissions to 16 PICUs, used the Pediatric Overall Performance Category and Pediatric Cerebral Performance Category scales and found that 69.2% (Pediatric Overall Performance Category) and 41.5% (Pediatric Cerebral Performance Category) of children were scored "normal" at discharge from the PICU.14 Another study showed that there was some improvement in functional health from 1 month after discharge to 6 months after discharge (assessed with the Pediatric Overall Performance Category scale) for 200 patients from a single PICU.15 A single-center study of 432 children in Australia used the Royal Alexandra Hospital for Children measure of function. From results obtained between 3 and 24 months after discharge, 59.3% of children were classified as having "normal quality of life."16
Work on health status measurement in children after pediatric intensive care has been undertaken with the Health Utilities Index (HUI) 2.10 The HUI2 is a measure of health status consisting of 6 attributes of health, namely, sensation, mobility, emotion, cognition, self-care, and pain. There is also a seventh attribute, fertility, but it can be assumed to be normal to make the instrument suitable for use as a generic measure.17,18 The questionnaire can be used for young children, usually through proxy completion by parents, although the tool has not been validated for subjects <1 year of age.9
In the Netherlands, the HUI2 was used in a study of 254 children (age: >12 months) who had been admitted to a single PICU, 1 year after discharge from the PICU, with good discrimination, validity, reliability, and reproducibility.10 In that study, 31.5% of children were in full health 1 year after discharge. In Australia, a study of 868 children used the HUI2 to obtain an assessment of health-related quality of life, on average 3.5 years after admission to a single PICU.11 The authors found that 83.6% of children had what they termed good quality of life.
The 6 attributes of the HUI2 can be summarized into a single preference-based index, which can be used to estimate quality-adjusted life years, informing economic evaluations of pediatric intensive care.18,19 Therefore, the HUI2 offers good potential as a health status measure after pediatric intensive care. This, together with evidence of satisfactory performance in other PICU settings, suggests that the HUI2 is the most appropriate tool to use in assessing health status in United Kingdom PICUs.
The United Kingdom Pediatric Intensive Care Outcome Study (PICOS) had 3 phases. The first phase aimed to assess the current methods proposed for risk adjustment of PICU mortality rates for PICU patients in the United Kingdom.5 The second phase monitored admissions by using the HUI2, and the third phase constructed a United Kingdom, preference-based, scoring algorithm for the HUI2.19 In this article, we report the second phase of the study and apply the United Kingdom scoring algorithm to the HUI2 data. We provide a description of the health status of the children, with respect to the 6 HUI2 attributes, and an associated indication of their quality of life.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Unit Recruitment
Twenty-seven PICUs in the United Kingdom were invited to participate in the United Kingdom PICOS.5 Data on all consecutive admissions at those units during a 1-year period (March 5, 2001, to March 4, 2002) were collected. Staff members at participating PICUs were asked to collect standardized information on all consecutive admissions to their unit during the study period. The information was recorded on a form and consisted of admission and discharge details (including demographic data), medical history, diagnoses, physiologic findings (enabling severity of illness to be calculated), and outcomes (both PICU and hospital).
Patient Recruitment and Consent
All children who were 6 months of age at admission and were discharged alive from a participating PICU during this period were eligible for this follow-up study. Informed consent for participation was obtained from the parents or guardians of the patients immediately before discharge from the PICU. A member of the clinical care team was responsible for approaching the parents or guardians of all eligible patients and asking for approval to send them a HUI2 questionnaire 6 months after their child was admitted to the PICU.
Status at 6 Months After Admission
After receipt of a completed consent form, the Office of National Statistics for England and Wales and Vital Events and Medical Research for Scotland were contacted at 3 months after admission, to determine whether the child had died since PICU discharge. This check was not conducted for admissions to the PICU in Northern Ireland, because it did not have a comparable tracing system. If the child had not died, then a letter and form were sent to the child's general practitioner, asking the general practitioner to indicate one of the following: suitable to send out a questionnaire, inappropriate to send out a questionnaire, child no longer on practice register, or child deceased. Only patients for whom a completed general practitioner form was received were included (if appropriate). Six months after the original admission, the HUI2 questionnaire was sent to the parents or guardians of children whose general practitioner had indicated it to be suitable. If no response was received within 2 months, then a reminder letter and questionnaire were sent out. In instances in which a child was admitted more than once within the same calendar month and consent was received each time, only the consent form relating to the first admission within the month was used, to avoid 2 questionnaires being sent out in close succession. For each child associated with a valid returned HUI2 questionnaire, the individual HUI2 attributes, the number of HUI2 attributes affected, and the HUI2 utility score were calculated as follows.
Individual HUI2 Attributes
The HUI2 questionnaire contains 15 questions, which are combined into 6 attributes (sensation, mobility, emotion, cognition, self-care, and pain). Health status within each attribute is described by 4 or 5 levels, ranging from no impairment (level 1) to mild impairment (level 2), moderate impairment (level 3), and severe impairment (levels 4 and 5). The levels of each attribute should be interpreted as developmentally appropriate for the age of the subject.17,20
Number of HUI2 Attributes Affected
To provide an overall description of health status for each patient, the number of HUI2 attributes scoring >1 (ie, not in full health for the particular attribute) was calculated, to indicate the number of affected attributes. A value of 0 indicated that the child had no impairment in any of the 6 HUI2 attributes and was thus defined as being in "full health," whereas a value of 6 reflected some level of impairment in all of the attributes.
Overall HUI2 Utility Score
The 6 attributes of the HUI2 were summarized into a single United Kingdom-derived, preference-based, HUI2 utility score.19 This HUI2 utility score provides an indication of quality of life and is derived from a complex function of the individual attributes that also takes into account interactions between different attributes. The resultant HUI2 score has values such that 1 is equivalent to full health, 0 is equivalent to dead, and a negative value indicates a health state considered to be worse than death.
The characteristics of the patients through the admission, consent, discharge, status at 6 months after discharge, and HUI2 questionnaire response stages are presented. The patient characteristics were age, gender, illness severity (Pediatric Index of Mortality [PIM] 2, Pediatric Risk of Mortality [PRISM] III-12, and PRISM III-24), whether the patient received ventilation at any time during the admission, and length of stay.5 We compared the differences in these patient characteristics between those with and without consent and between those who did and did not return a HUI2 questionnaire, to assess the representativeness and generalizability of the results (by using the appropriate nonparametric test according to whether the characteristic was a continuous or categorical outcome).
We determined the estimated rate of death by 6 months after PICU admission by using the information obtained in identifying patient status at 6 months after admission. We described and compared (
2 test) the distribution of the number of HUI2 attributes affected according to illness severity and the Spearman rank correlation between the HUI2 score and each measure of illness severity. For the purposes of this descriptive study, illness severity was indicated by using the probability of death associated with the PIM2, PRISM III-12, and PRISM III-24 scoring systems, calibrated for use in the United Kingdom.5 For each score, patients were allocated to 4 groups of increasing illness severity, according to their distribution quartiles. Ethical approval for this study was granted by the Trent Multi-Research Ethics Committee (approval MREC/99/4/046).
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Unit Recruitment
Twenty-seven PICUs were invited to participate in the United Kingdom PICOS, and 23 (85%) agreed. The 4 units that did not take part were all based in London and admitted a median of 342 admissions in 2001, compared with a median of 453 in the PICUs that did participate.
Patient Recruitment and Consent
During the 12-month data collection period, there were a total of 7214 admissions of patients 6 months of age with data submitted to the United Kingdom PICOS. Table 1 illustrates the general characteristics of these patients. The median age was 4.3 years, 55.7% of patients were male, the median probabilities of deaths measured with the PIM2, PRISM III-12, and PRISM III-24 were 0.024, 0.018, and 0.016, respectively, 61.4% of patients received mechanical ventilation during their PICU stay, and the median length of PICU stay was 37.0 hours.
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Status at 6 Months After Admission
Of the 7214 admissions, 426 patients (5.9%) died before discharge from the PICU (Fig 1). Of the 6786 patients who survived to PICU discharge, consent to take part in the follow-up stage was obtained for 2642 (38.9%). By 6 months, another 42 (1.9%) of these 2642 children had died and 477 were not traceable. After confirmatory checks with their general practitioners regarding their suitability to receive a questionnaire, an additional 89 children were deemed "not appropriate to contact" and were excluded.
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Previous work as part of the United Kingdom PICOS, including data on all children
6 months of age at admission, found that the hospital mortality rate was 7.8%. Therefore, the mortality rate by 6 months after admission could be estimated as 9.7% (7.8% + 1.9%; 95% confidence interval: 8.5%–11.0%).5
Comparison of Patient Characteristics
Of the 2034 HUI2 questionnaires sent subsequently, 1455 (71.5%) were returned. The patient's age, gender, and length of PICU stay did not vary significantly between those who consented and those who did not (P = .107, P = .524, and P = .644, respectively). Illness severity at admission was lower for the patients who consented, compared with those who did not consent. The median probabilities of death were 0.021 vs 0.022 for those consented versus those who did not (P = .037) for PIM2, 0.015 vs 0.017 (P < .001) for PRISM III-12, and 0.014 vs 0.016 (P < .001) for PRISM III-24. There were no significant differences in the patient characteristics of patients who were sent a HUI2 questionnaire and those who returned a HUI2 questionnaire.
Health Status According to Attribute (Individual HUI2 Attributes)
Figure 2 shows the distribution of valid HUI2 attribute levels calculated from the 1455 responses. For the sensation, cognition, emotion, pain, mobility, and self-care attributes, 767 (57.1%), 951 (69.6%), 940 (66.8%), 919 (64.9%), 962 (68.7%), and 939 (67.0%) children, respectively, were at level 1 and thus had no attribute-specific impairment at 6 months after admission.
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Overall Health Status (Number of HUI2 Attributes Affected)
Overall, 397 (27.3%) children had no HUI2 attributes affected at 6 months after admission (Fig 2) and were thus defined as being in full health. In addition, 4.4% had some level of impairment in all of the outcome measures at 6 months after admission.
Quality of Life (Overall HUI2 Utility Score)
The mean ± SE HUI2 utility score of the 1455 responders was 0.73 ± 0.01 (Fig 2).
Illness Severity
Figure 3 shows the distribution of the illness severity (PIM2, PRISM III-12, and PRISM III-24) quartile groupings according to the proportions of children who were in full health at 6 months after admission. There were significant associations between illness severity measured with PIM2, PRISM III-12, and PRISM III-24 and the proportions of patients in full health (P = .008, P = .008, and P = .020, respectively). There was some evidence of correlation (P < .001) between the HUI2 scores and PIM2, PRISM III-12, and PRISM III-24 results (Spearman rank correlation coefficient: –0.099, –0.156, and –0.151 respectively).
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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This study found that nearly one third (27.3%) of children
6 months of age at PICU admission were in full health 6 months after admission, as measured with the HUI2, whereas 4.4% had some level of impairment in all of the outcome measures at 6 months after admission. With the United Kingdom preference model, the mean ± SE HUI2 utility score was 0.73 ± 0.01. The study found a significant association between illness severity at admission to the PICU, as measured with PIM2, PRISM III-12, and PRISM III-24, and the proportion of children in full health 6 months after admission. Within this study, the most commonly affected HUI2 attribute was sensation (for which 42.9% of children had some impairment), and the least affected attribute was cognition (for which 30.4% of children had some impairment). The study also found that, of 2642 children who survived and had consent to take part in the follow-up study, 42 (1.9% of those with known outcomes) had died by 6 months, giving an overall estimate of the mortality rate 6 months after admission to PICUs in the United Kingdom as 9.7%. These results provide the first national follow-up data on PICU admissions. They should provide important new information to PICU clinicians, who must make decisions that affect the health of children long after the children have been discharged from the clinicians' care, often without any knowledge of the long-term outcomes of the children they treat. The results provide both a description of the overall health status of children and an indication of quality of life by using United Kingdom-derived preferences, which should increase the potential for future economic evaluations within a PICU setting.
The findings reported in this study are similar to those found in smaller studies elsewhere. In a single-center study conducted in the Netherlands with the HUI1, 34% of admitted patients were found to be in full health 1 year after PICU admission, whereas 5% had some level of impairment in all of the outcome measures 1 year after admission.9 In a single-center study in Australia, also using the HUI1, 26.4% of survivors were in full health at a median of 3.5 years after admission.11 Comparing the current results with studies using other outcome measures is more problematic. However, it is worth noting that another study in Australia, using the Royal Alexandra Hospital for Children measure of function, found that 59.3% of children were classified as normal between 3 and 24 months after discharge.16 The current study is strengthened by being a large national multicenter study using standardized data-collection tools and a fixed follow-up time for administration of the health status questionnaire. The increase in sample size, compared with single-center studies, has allowed us to compare health status outcomes with respect to the reason for admission and the presence of a previous medical problem or congenital condition.
The findings showing a significant association between health status and illness must be treated with caution and require additional investigation. They suggest that illness severity at admission is an important determinant of health status 6 months after admission. However, the strength of the relationship must be explored more thoroughly, to assess whether there is potential to expand any of the scoring systems for use as risk-adjustment tools beyond mortality risks.
The study would have been stronger if preadmission HUI2 data were also available. This would have allowed an estimation of the net health gain (or loss) between admission and follow-up evaluation. However, a combination of resource and ethical issues contributed to us not seeking such data for the current study. An additional limitation was that we excluded 29% of all admitted patients who were <6 months of age at admission, because of concerns regarding the validity of the HUI2 at such a young age. Excluding such a proportion of children is a concern but, unless a health status measure that can be applied to such young infants is developed, future studies may have to apply the same exclusion criterion. Indeed, the HUI2 may not be the most appropriate tool to measure health status in children, and other tools may be more appropriate.21 The HUI2 data presented here were based on parental responses, which may depend on the parents' cultural, social, and educational background, their child's medical history, and their personal expectations. In addition, responses may depend on knowledge of normal child development.22 Such issues will be of particular importance in attempts to compare outcomes across markedly different cultural groups or countries. Furthermore, it is worth noting that similar factors may lead other countries to provide different preferences in transforming the HUI2 attributes (health status) into a HUI2 score (quality of life). This should be borne in mind during interpretation of the indicators of both health status and quality of life provided by the HUI2.
Consent for the follow-up study was obtained for 39% of children who survived to PICU discharge. A previous study examining the gaining of consent in a PICU setting in the United Kingdom, for the purposes of a national audit, obtained consent for 43% of patients.23 The study documented the difficulties of obtaining consent and recommended that more resources are required to increase the proportions of children for whom consent is obtained. The current study found that patients who did not provide consent had greater illness severity and were more likely to have previous medical problems or a congenital condition but were less likely to have received ventilation. In all cases, these were not large differences but were statistically significant. The relationship between these patient characteristics and the number of HUI2 attributes affected, with the additional potential selection bias resulting from the 89 children excluded after confirmatory checks with their general practitioners, suggests that our final estimate of the proportion of children in full health may be a slight overestimate.
Our study does not provide data to support attributing variations in 6-month outcomes between PICUs to the quality of care provided during the child's stay. Variations in both mortality rates and health status by 6 months after admission could be attributable to variations in postdischarge health or social care, socioeconomic status, and other unmeasured factors associated with the child. However, it can be argued that improvements in PICU care, whether through the introduction of a new therapy or the development of a new configuration of care services, could lead to improvements not only in mortality rates at discharge but also in mortality rates at 6 months and in health status. If the introduction of such innovations is performed within the framework of a randomized trial, then there may be a reduction in the confounding influence of such postdischarge factors in the assessment of longer-term health status.
Death after pediatric intensive care in the United Kingdom is relatively uncommon; therefore, the assessment of health status over time is vital. At 6 months after PICU admission, there is significant morbidity. To assess the impact of strategies to improve or to optimize PICU configurations on longer-term outcomes, the standardized collection of information on factors such as preexisting comorbidities, reason for admission, and illness severity is very important.24 In addition, it is likely that longer-term outcomes are influenced by post-PICU discharge factors such as postdischarge care and socioeconomic factors.
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ACKNOWLEDGMENTS |
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This study was funded by the United Kingdom Medical Research Council (grant G9900013).
The United Kingdom PICOS Steering Group included Stephanie Black, Intensive Care National Audit and Research Centre; Anthony Brady, Intensive Care National Audit and Research Centre; Brigitte Colwell, University of Sheffield; Caroline Goldfrad, Intensive Care National Audit and Research Centre; John Brazier, University of Sheffield; Neil Bennett, Sheffield Children's Hospital; David Hallworth, Royal Hospital for Sick Children, Glasgow; Philip Holland, General Infirmary at Leeds; Sam Jones, University of Sheffield; Chris McCabe, University of Warwick; Ian Murdoch, Guy's and St Thomas Hospital, London; Jon Nicholl, University of Sheffield; Gareth Parry, University of Sheffield; Gale Pearson, Birmingham Children's Hospital National Health Service Trust; Jane Ratcliffe, Royal Liverpool Children's Hospital; Khadija Rantell, University of Sheffield; Kathy Rowan, Intensive Care National Audit and Research Centre; Charles Stack, Sheffield Children's Hospital; Katherine Stevens, University of Sheffield. The United Kingdom PICOS Study Group participating PICUs were based at the following National Health Service Trusts: Addenbrookes National Health Service Trust, Cambridge; Birmingham Children's Hospital, Birmingham; Bristol Royal Hospital for Children, Bristol; Leeds General Infirmary, Leeds; Royal Liverpool Children's National Health Service Trust (Alder Hey), Liverpool; Sheffield Children's Hospital, Sheffield; Guy's and St Thomas Hospital Trust, London; Royal Hospital for Sick Children, Glasgow; Royal Hospital for Sick Children, Edinburgh; Newcastle Upon Tyne Hospitals National Health Service Trust, Newcastle; Royal Manchester Children's Hospital, Manchester; The John Radcliffe Hospital, Oxford; Great Ormond Street Hospital for Children, London; Royal Hospital for Sick Children, Belfast; Queen's Medical Centre, Nottingham; Southampton General Hospital, Southampton; North Staffordshire Hospital National Health Service Trust, Stoke-on-Trent; University Hospitals of Leicester, Leicester; and University Hospital of Wales, Cardiff.
We thank the staff members at all participating units for their enormous dedication in collecting these data. We also thank the parents, guardians, and children who took part in the United Kingdom PICOS for their time and invaluable contributions. We thank Christopher McCabe for his contribution to the original design of the United Kingdom PICOS.
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FOOTNOTES |
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Accepted Jul 25, 2006.
Address correspondence to Gareth J. Parry, PhD, Department of Medicine, Children's Hospital, Boston AU 523, 300 Longwood Ave, Boston, MA 02445. E-mail: gareth.parry{at}childrens.harvard.edu
The study sponsor played no part in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the manuscript for publication.
The authors have indicated they have no financial relationships relevant to this article to disclose.
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