Dynamic outcome prediction in a socio-demographically diverse population-based cohort of extremely preterm neonates.

OBJECTIVE: Accurate outcome prediction is crucial for counseling parents and providing individualized treatment to extremely premature infants. We sought to improve upon existing prediction model by using a diverse population-based cohort of extremely premature live births (⩽28 weeks' gestation) for survival and survival without severe neonatal morbidity at different times throughout the first week of life and to evaluate potential differences by race/ethnicity and maternal education. STUDY DESIGN: Retrospective cohort study of all California live births from 2007 through 2011 with linked birth, death and hospital discharge records. RESULTS: A total of 6009 infants were included. In the validation data set at time of delivery, the area under the receiver-operating characteristic curve for the model containing all predictors was 0.863 for survival and 0.789 for survival without severe morbidity. The marginal probability of survival without severe neonatal morbidity of an Asian infant born to a mother with <12 years of education compared with the reference (Caucasian infant, mother with ⩾12 years of education) was -0.23 (95% confidence interval (CI) -0.31 to -0.15) for all infants at time of birth and -0.28 (95% CI -0.39 to -0.18) for infants with attempted resuscitation. Notably, no other differences by racial/ethnic category and maternal education emerged. CONCLUSIONS: Probabilities of survival and survival without major morbidity change rapidly throughout the first week of life. Extremely premature infants born to Asian mothers with less than a high school education appear to have a lower probability to survive without significant morbidity compared with their Caucasian peers.

Population-based risks of mortality and preterm morbidity by gestational age and birth weight.

OBJECTIVE: The objective of this study is to examine the effect of small or large for gestational age (SGA/LGA) status on mortality and morbidity by gestational age. STUDY DESIGN: Logistic binomial regression was used to calculate relative risks (RRs) and 95% confidence intervals for infant mortality and preterm morbidities for SGA or LGA compared with appropriately grown (AGA) deliveries stratified by gestational age group. RESULTS: Compared with AGA infants of similar gestational age, SGA infants were at increased risk for infant mortality. Mortality risk was decreased for LGA infants born between 25 and 27 weeks (RR: 0.6) but increased for LGA infants born between 28 and 31 weeks (RR: 1.9). Risk of preterm morbidity was increased for SGA infants born between 28 and 38 weeks, but decreased for LGA infants born before 37 weeks. CONCLUSION: This study demonstrates the importance of considering birth weight for gestational age when evaluating morbidity and mortality risks.

Acceptability of a minimally invasive perinatal/paediatric autopsy: healthcare professionals' views and implications for practice.

BACKGROUND: Perinatal autopsy provides essential clinical information, including cause of death; yet, autopsy rates have steadily declined because of parental refusal. Technology now enables less invasive alternatives to traditional autopsy and may increase the acceptability of post-mortem examination. OBJECTIVE: This study aimed to examine the relative acceptability among healthcare professionals of a minimally invasive autopsy (MIA; magnetic resonance imaging and laparoscopic-guided tissue sampling), compared with standard autopsy. METHODS: This study was questionnaire-based survey of healthcare professionals working in clinical settings where paediatric and perinatal deaths occur. RESULTS: Of 250 questionnaires distributed, 224 were returned (90% response rate). Autopsy was generally perceived as acceptable. Demographic factors affecting acceptability included ethnicity and religion but not professional role. MIA compared favourably with traditional autopsy, 50% of respondents reporting both equally acceptable, 40% reporting MIA more acceptable and 10% less acceptable. Healthcare professionals agreed that having a MIA option would make it easier to discuss autopsy with parents (P < 0.001). CONCLUSION: Less invasive autopsy appears an acceptable alternative to traditional autopsy for most respondents. Healthcare professionals should be aware that ethnic and religious opinions influence their own views on autopsy decisions and should be mindful of this when discussing autopsy with parents. Further research is needed to determine parental opinions.

How parents make sense of their young children's expressions of everyday pain: a qualitative analysis.

BACKGROUND: Little is known about the communication of everyday pain between young children and their parents, i.e. when children experience pain resulting from minor injury or illness that occur in everyday life. This study aimed to gain an in-depth understanding of how parents make sense of their young children's expression of everyday pains and how they respond. METHODS: Parents (n = 48) of children (1-5 years inclusive) participated in focus group discussions at seven children's centres across England where they were asked to describe their children's communication of everyday pain. Thematic analysis was used to analyse the data. RESULTS: Six main themes were identified in the parents' discourse. Parents described children's pain communication as (1) sharing common elements, but unique to each child; (2) having multifaceted pain and non-pain-related purposes; (3) challenging to interpret; (4) influenced by their own pain-related communication; (5) requiring a variety of pharmacological, psychological and physical strategies to manage. The sixth theme that emerged from the data related to parents' dissatisfaction with health care providers, particularly general practitioners' sometimes quick dismissal of parental concerns about their children's pain and illness complaints. CONCLUSIONS: These findings suggest that parents have well developed, although personal, ways of recognizing and responding to their children's communication of pain, but also experience uncertainty in their judgments. Parents would benefit from information about the developmental aspects of pain and should be included as active partners in their children's pain assessment and management.

Study of the factors affecting health-related quality of life in adolescents after liver transplantation.

The aim of the study was to identify factors affecting health-related quality of life (HRQL) in adolescents after liver transplantation. HRQL was measured using the CHQ-CF87 in 55 adolescents, aged 12-18 years. Factors associated with HRQL included allograft morbidity, psychological and family-related variables measured through standardized questionnaires. The domains of the CHQ-CF87 were reduced using factor analysis to give physical, psychological and social domains. Impacting factors were identified through stepwise, multiple regression analysis. Adolescents had significantly lower HRQL in every domain except for role/social-behavior and family cohesion compared to the general population. Adolescents experienced median 18 (range 4-31) symptoms related to immunosuppression, 40(75%) had one or more chronic illnesses related to immunosuppression and 12(22%) had a history of emotional difficulties. Self-esteem and emotional health were similar to the general population but behavior and aspects of family function were lower. Following regression analysis, the factors associated with HRQL were: age at transplant, secondary chronic illness, symptom distress, headaches, history of emotional difficulties, self-esteem and family conflict. These explained 57% of the variance in physical function, 61% of psychological function and 39% of social function. HRQL is significantly reduced in adolescents after transplantation, which could be related to immunosuppression and psychosocial factors.

What helps when it hurts: children's views on pain relief.

BACKGROUND: Previous studies have focused on children's views of sources of pain and only secondarily explored their views on pain-relief strategies. METHODS: An exploratory cross-sectional descriptive design and 'draw and write' technique were used to investigate what children think helps them when they have pain. RESULTS: The sample (n = 71) was comprised of 33% boys and 67% girls, with an age range of 4-16 years (mean +/- SD: 9.25 +/- 3.04). Four overarching themes were derived that were common to both the texts and drawings: 'People who help', 'What I do that helps', 'What other people do that helps' and 'Things that help'. Children also described their emotional reactions to pain or pain relief. Multiple themes were represented in most of the texts and drawings. There were few differences in the themes present in the children's texts and drawings based on developmental age and no differences based on gender. CONCLUSIONS: Children across the three developmental age groups view themselves as active agents in pain relief. Although less than half of the children described specific behaviours they had taken, almost all children indicated their active role as the central figure in relation to use of objects or the actions of others.

Re-thinking family-centred care across the continuum of children's healthcare.

BACKGROUND: The terms family-centred care (FCC) and family-centred services (FCS) are used interchangeably across the continuum of children's healthcare to encompass concepts of: parental participation in children's healthcare; partnership and collaboration between the healthcare team and parents in decision-making; family-friendly environments that normalize as much as possible family functioning within the healthcare setting; and care of family members as well as of children. However, authors from different professional and policy perspectives have used different definitions and literatures when arguing the evidence for FCC and FCS. METHOD: A critical literature review and theoretical discussion exploring common concepts and issues forming the basis for a research agenda further strengthening of the evidence base for FCC. A systematic identification of constructs, concepts and empirical indicators is developed and applied to exemplars in pain and asthma that span the continuum of children's healthcare across acute and community settings. CONCLUSIONS: The extent to which the concepts are supported by research and applied in practice remains unclear. We propose that re-thinking of FCC is required in order to develop a more coherent programme of research into the application of FCC theory in children's healthcare.

Parental concern and distress about infant pain.

OBJECTIVE: To describe parent views on infant pain care and to explore relations between parents' experience of their infant's pain care and parental stress. DESIGN: Descriptive, cross sectional survey. SETTING: Nine neonatal units (196 parents) in the United Kingdom and two neonatal units in the United States (61 parents). PARTICIPANTS: Parents of preterm and full term infants admitted to hospital. INTERVENTIONS: Parents completed a three part questionnaire after the second day of the infant's admission and after they had made at least one previous visit to see their infant in the neonatal unit. MAIN OUTCOME MEASURES: Parent concerns about infant pain; parental stress; parent state and trait anxiety. RESULTS: Parents reported that their infants had experienced moderate to severe pain that was greater than they had expected (p < 0.001). Few parents (4%) received written information, although 58% reported that they received verbal information about infant pain or pain management. Only 18% of parents reported that they were shown signs of infant pain, but 55% were shown how to comfort their infant. Parents had numerous worries about pain and pain treatments. Parental stress was independently predicted by parents' estimation of their infant's worst pain, worries about pain and its treatment, and dissatisfaction with pain information received, after controlling for state anxiety and satisfaction with overall care (F = 29.56, df 6, p < 0.001, R(2) = 0.44). The findings were similar across sites, despite differences in infant characteristics. CONCLUSIONS: Parents have unmet information needs about infant pain and wish greater involvement in their infant's pain care. Parent concerns about infant pain may contribute to parental stress.

Assessment and management of pain in neonates.

Neonates are capable of experiencing pain from birth onwards. An impressive body of neuroanatomical, neurochemical and biobehavioural evidence, which has accumulated over the past 2 decades, supports this capability. This evidence mandates health professionals to attend to the prevention, elimination, or at the very least, control of pain for infants. This mandate is essential since pain is known to have both immediate and long term effects, especially if pain is untreated and is severe, prolonged or frequently experienced. Therefore, pain must be assessed frequently, not only to measure location, intensity and duration but also to determine the effectiveness of interventions implemented to control pain. An impressive array of measures for assessing acute pain in infants exists which incorporates valid pain indicators in this population. However, there is a need to develop new measures to assess chronic pain conditions and pain in infants in acute situations.

The safety and efficacy of peripheral intravenous catheters in ill neonates.

This article describes the use of a quality improvement clinical audit approach to identify insertion practices, duration of therapy, and complications related to peripheral intravenous catheters. These data provide evidence for adherence to practice standards and benchmarks for evaluation of new interventions to improve the safety and efficacy of intravenous access practices. Implications for quality improvement and clinical research related to intravenous-device practices within the neonatal intensive care unit are discussed.

Effect of less frequent bathing of preterm infants on skin flora and pathogen colonization.

OBJECTIVE: To determine if less frequent bathing alters colony count or type of organism in skin flora of preterm infants. DESIGN: Descriptive, repeated measures study. SETTING: A regional neonatal intensive-care unit. PARTICIPANTS: Forty-five preterm infants, 31 weeks mean gestational age (SD +/- 1.6 weeks) and 17 days mean postnatal age (SD +/- 3.7 days). INTERVENTIONS: Before the study, all infants received a bath every other day. On Day 1 of the study, a routine sponge bath was given, then no further bathing was performed for 4 days. MAIN OUTCOME MEASURE: Serial axillary skin cultures to identify the number of colony forming units (CFU) and type of organism were obtained within 30 minutes of the bath on Day 1 and at the same time on Days 2, 3, and 4. RESULTS: Normal skin flora CFU count, predominantly coagulase-negative staphylococci, increased within 48 hours after bathing compared to values 30 minutes after bathing. There were no differences in normal skin flora CFU on Days 2, 3, and 4. Pathogens were identified in 12 infants for at least one time point during the study. Significantly fewer pathogens were found in the cultures over time, despite longer interval since bathing, and no infant developed symptoms of infection during the study period. CONCLUSION: Findings from this study suggest that the frequency of bathing of preterm infants can be reduced without increasing the risk of infection.

Long-term goals and normalization strategies of children and families affected by HIV/AIDS.

Decreasing morbidity and mortality of HIV/AIDS has created a growing population of parents and children who are long-term survivors. Using symbolic interaction and ethnographic methods, this study explores families' long-term goals and normalization strategies and the relevance of the published attributes of the concept of normalization for families affected by HIV disease. Findings indicate that treatment complexity and the need for stigma management prevent families from defining their lives as normal, but they do deliberately use normalization strategies to achieve the following goals: health maintenance for members with HIV, facilitation of children's school participation, and enhancement of the emotional well-being of all family members.

Pain assessment in infants and children.

The science of pain assessment for infants and children has grown substantially in the past several decades to the point that valid and reliable methods for pain assessment are available for use in clinical settings. Accurate pain assessment requires consideration of children's developmental level, type of pain experienced, history and context of pain, family influences, and interaction with the health care team. Research is needed to improve the sensitivity, specificity, and generalizability of pain-assessment tools and to more fully incorporate contextual factors into the objective assessment process. Finally, the improvement of pain assessment in the clinical setting can be viewed as a patient care quality issue, and continuous quality improvement methods can be used effectively to incorporate pain assessment as an integral component of every infant's and child's health care.

Treatment of pain in the neonatal intensive care unit.

Pain is a disruptive influence on infants in the NICU. The most obvious and effective strategy to decrease infant pain in the NICU is to stringently limit the frequency of painful procedures, especially those that are most commonly reported (i.e., heel lances and endotracheal suctioning), and have these performed on infants that are most unstable or critically ill by the most experienced person available. Organizational concerns over the cost of NICU care have forced a re-evaluation of the necessity of certain diagnostic and care procedures and a limiting of procedures to those that can be documented to positively affect clinical outcome. Pharmacologic and nonpharmacologic strategies are essential to the prevention and management of neonatal pain, and these should be considered for complementary use for every infant. Research has shown the safety and effectiveness of some of the strategies in reducing mild pain caused by brief invasive procedures; however, many of the studies had methodologic limitations. Therefore, more research is required to determine the comparative efficacy of the various strategies and to document additive or synergistic effects when combined.

Plasma norepinephrine levels, vagal tone index, and flexor reflex threshold in premature neonates receiving intravenous morphine during the postoperative period: a pilot study.

OBJECTIVE: The goal of this study was to evaluate the effects of a single dose of intravenous morphine on postoperative pain in extremely premature neonates after thoracotomy. DESIGN: Descriptive correlational study. PATIENTS: Twenty-four critically ill mechanically ventilated premature neonates with a mean gestational age of 26.1 +/- 2.1 (SD) weeks and a postnatal age of 13.8 +/- 8.1 (SD) days. OUTCOME MEASURES: Plasma norepinephrine (NE) levels, vagal tone index (VTI), and flexor reflex threshold were measured preoperatively, immediately before, and 20 and 60 minutes after the administration of the first postoperative dose of morphine (0.1 mg/kg). RESULTS: One-way repeated-measures ANOVA revealed no significant change in plasma NE levels from baseline levels (df[2,32] = 2.40, p = 0.11). Pre- and postmorphine VTI values were significantly lower than preoperative values (df[3,60] = 6.04, p = 0.0012), but no significant differences were found between pre- and postmorphine VTI values. Neonates (n = 10) who had a flexor reflex response during the postoperative period demonstrated no significant differences in the force required to elicit a flexor reflex across the four measurements (df[3,27] = 0.76, p = 0.53); however, the flexor reflex responses were significantly less vigorous during the postoperative period than at baseline. CONCLUSIONS: Findings from this pilot study suggest that the dose of morphine commonly used to treat postoperative pain in premature neonates does not affect NE, VTI, and flexor reflex threshold values within 1 hour of administration.

Factors explaining lack of response to heel stick in preterm newborns.

OBJECTIVE: To determine factors explaining lack of response by preterm newborns to heel stick for blood sampling. DESIGN: A cross-sectional design based on secondary analysis of the control session of a randomized crossover design. SETTING: Four Level III neonatal intensive-care units of university teaching hospitals. PARTICIPANTS: 120 preterm newborns with an average age of 28 weeks postconceptional age. INTERVENTION: 24 newborns who showed a "no change" response according the Premature Infant Pain Profile were compared to the remaining 96 newborns who had shown a pain response. MAIN OUTCOME MEASURES: Age (postconceptional age at birth, postnatal age at study), Apgar score at 5 minutes, severity of illness, sex, race, wake/sleep state, previous study sessions, total number of painful procedures since birth, and time since last painful procedure. RESULTS: After stepwise logistic regression analysis the variables remaining in the final model that explained the difference between the groups were postnatal age at time of study, postconceptional age at birth, time since last painful procedure, and wake/sleep state. CONCLUSIONS: Newborns who were younger, asleep, and had undergone a painful event more recently were less likely to demonstrate behavioral and physiologic indicators of pain.

Sleep disturbances in children with human immunodeficiency virus infection.

OBJECTIVE: To describe the sleep patterns and level of fatigue in children and adolescents (6-18 years of age) with HIV infection, compared with ethnic-, gender-, and age-matched healthy children in the home setting. DESIGN: Descriptive, comparative. SETTING: Conducted in each child's home environment. STUDY PARTICIPANTS: Eighteen HIV-infected and 15 noninfected children completed the study. The Centers for Disease Control and Prevention HIV classifications for the 18 HIV-infected children were: A (n = 7), B (n = 6), and C (n = 5). METHODS: A symptom diary was developed using a previously validated fatigue assessment scale, modified for use with children. Content validity of the diary was established with a panel of 5 experts in child development and pediatric HIV disease. Children were asked to complete the diary each morning and evening for 3 days. Each child wore a wrist actigraph during the same period. RESULTS: The HIV-infected children had significantly more wake time after sleep onset, compared with noninfected children (13.55% vs 7. 47%). The HIV-infected children had more awakenings (25.33 vs 16.71) and were awake for longer periods (3.01 vs 1.01 minutes), compared with noninfected children. By parent report, 7 HIV-infected children napped and 2 noninfected children napped, indicating greater daytime fatigue in the HIV-infected children. HIV-infected children also reported a greater level of evening tiredness (2.47 vs 1.8). CONCLUSIONS: The findings from this study suggest that sleep disturbances occur in HIV-infected children, similar to findings previously described in HIV-infected adults. Additional research is necessary to characterize the nature and patterns of sleep disturbance and fatigue related to pediatric HIV-infection, to assess the impact these may have on daily activities, and to develop strategies to improve sleep for these children.

Somatization, anxiety and depression as measures of health-related quality of life of children/adolescents with cancer.

This descriptive study of health-related quality of life of children with cancer compared children/adolescents', parents' and teachers' ratings for somatization, depression and anxiety to determine if there were significant correlations among respondent scores. In addition, the percentage of agreement among respondents and significant differences based on age, gender, use of cranial radiation and treatment status were measured. Forty-three children/adolescents with cancer, currently receiving therapy for at least 1 year or who had completed therapy for no more than 3 years (excluding children who had received bone marrow transplants or who had brain tumors), were recruited, with a parent and teacher, from 3 university medical centers. The Behavioral Assessment System for Children questionnaires for children/adolescents, parents and teachers were used. Parents reported a higher level of depression for the children/adolescents with cancer than did the teachers or the children/adolescents themselves. Parents reported a higher level of anxiety for the children/adolescents than did the teachers. High positive correlations were found among scores from parents and teachers and among scores from parents and children/adolescents for the anxiety and depression but not somatization subscales. Children/adolescents and teachers had high, positively correlated scores only for the depression subscale. High, positive correlations were found between somatization, anxiety and depression within each group of respondents. A significant percentage of agreement between all respondents on ratings for at-risk status was obtained only for the depression subscale. Age was the only variable found to have an influence on scores and only for the anxiety subscale.