The opinions of clinical staff regarding neonatal procedural pain in two Norwegian neonatal intensive care units

AIM: Neonates are subjected to numerous painful procedures without sufficient pain management. The aim of this study was to describe the opinions of Norwegian physicians, nurses and nurse assistants who care for neonates, regarding procedural pain in neonates. METHODS: A replication of a previous questionnaire study was conducted in two Norwegian neonatal intensive care units (NICU's). The questionnaire aimed at evaluating procedure painfulness, the current use of pharmacological agents and comfort measures and the optimal use of both. RESULTS: Ninety members of the clinical staff participated, which is a response rate of 87%. Opinions on how procedural pain is currently and optimally managed differed significantly. Although most respondents rated a majority of the listed procedures as being more than moderately painful, pharmacological agents were rarely used, except for the insertion of a chest tube and endotracheal intubation. Comfort measures were also believed to be underutilized, but not to the same degree as pharmacological agents. CONCLUSION: Procedural pain in neonates is not sufficiently managed and both pharmacological agents and comfort measures are underutilized, according to clinicians at two Norwegian NICU's.     

Pain assessment and procedural pain management practices in neonatal units in Australia

OBJECTIVE: To identify current pain assessment and procedural pain management practices in neonatal units in Australia. METHODS: Postal survey conducted during December 2003 and January 2004. The survey comprised questions relating to pain assessment scores, pain reduction strategies for minor painful procedures and the use of articulated policies relating to procedural pain management. Participants were the Nurse Unit Managers or their nominees of neonatal intensive care units, special care units and newborn emergency transport services in Australia. RESULTS: Surveys were sent to 181 eligible organizations, and 105 of these were returned (58%). Six units (6%) used pain assessment scores on a regular basis, and 16 units (15%) had an articulated policy directing pain management practices during painful procedures. Non-nutritive sucking and various nursing comfort measures were the pain reduction strategies most frequently used during minor painful procedures. Twenty-four units (23%) used sucrose or other sweet-tasting solutions during procedures; however, the reported frequency of their usage was low. Breast-feeding during venepuncture, heel lance and intramuscular or subcutaneous injection was infrequently practised and topical anaesthetic agents were rarely used. CONCLUSION: This survey demonstrates that the majority of Australian neonatal units have no articulated policy to guide pain management during painful procedures and do not regularly undertake pain assessments. Current evidence-based strategies to reduce procedural pain in hospitalized infants are used infrequently.     

Do we still hurt newborn babies? A prospective study of procedural pain and analgesia in neonates

BACKGROUND: Despite an increasing awareness regarding pain management in neonates and the availability of published guidelines for the treatment of procedural pain, preterm neonates experience pain leading to short- and long-term detrimental effects. OBJECTIVE: To assess the frequency of use of analgesics in invasive procedures in neonates and the associated pain burden in this population. METHODS: For 151 neonates, we prospectively recorded all painful procedures, including the number of attempts required, and analgesic therapy used during the first 14 days of neonatal intensive care unit admission. These data were linked to estimates of the pain of each procedure, obtained from the opinions of experienced clinicians. RESULTS: On average, each neonate was subjected to a mean +/- SD of 14 +/- 4 procedures per day. The highest exposure to painful procedures occurred during the first day of admission, and most procedures (63.6%) consisted of suctioning. Many procedures (26 of 31 listed on a questionnaire) were estimated to be painful (pain scores >4 on a 10-point scale). Preemptive analgesic therapy was provided to fewer than 35% of neonates per study day, while 39.7% of the neonates did not receive any analgesic therapy in the neonatal intensive care unit. CONCLUSIONS: Clinicians estimated that most neonatal intensive care unit procedures are painful, but only a third of the neonates received appropriate analgesic therapy. Despite the accumulating evidence that neonatal procedural pain is harmful, analgesic treatment for painful procedures is limited. Systematic approaches are required to reduce the occurrence of pain and to improve the analgesic treatment of repetitive pain in neonates.     

Pain behaviours in Extremely Low Gestational Age infants

BACKGROUND: To date, there are over 40 infant pain measures. Despite this plethora of measures, only 8 have included preterm infants and only 2 have included Extremely Low Gestational Age (ELGA; infants <28 weeks GA) in their development. Without reliable, valid and clinically useful indicators for procedural pain in ELGA infants, clinicians have no means to interpret the responses from an immature infant who may respond differently from infants of older GA. OBJECTIVE: To examine the physiological, behavioural and biochemical responses to painful and non-painful procedures in ELGA infants and the influence of GA and sex. DESIGN/METHODS: A prospective crossover design with 50 ELGA infants from one Canadian tertiary level NICU was conducted. Infants were assessed in random order during standardized painful (heel lance) and non-painful (diaper change) procedures. Physiological (heart rate, oxygen saturation) and behavioural (facial and body movement) indicators were continuously collected during 4 phases of the procedures. Biochemical (salivary cortisol) indicators were collected immediately before and 20 min following the procedures. RESULTS: Four facial actions (brow bulge, eye squeeze, nasolabial furrow, vertical mouth stretch) increased immediately following the heel lance. There were no specific changes in physiological, body movement or cortisol indicators following the heel lance. ELGA infants demonstrated greater body movements during the diaper change, which may reflect immature motor coordination. No differences in pain responses were found for infants born between 23-25 6/7 weeks GA and those between 26-28 weeks GA. Similarly, no gender differences were found. CONCLUSIONS: Changes in 4 facial actions were the most sensitive indicators of pain in ELGA infants. This finding is consistent with existing measures where facial actions are the most prominent pain indicators. Specific body movements such as those included in NIDCAP, may provide more information about pain in ELGA infants. Movements such as hand-on-face, finger splaying, fisting, arching or yawning need to be examined in future research.     

Procedural pain in children: education and management. The approach of an Italian pediatric pain center

Pain management should be warranted for all children in every situation. Italian legislation proposes a model for pain assistance based on specialized tertiary centers which provide direct clinical management for complex cases and assure continuous cooperation with hospitals and family pediatricians for managing painful conditions every day. The Procedural Pain Service of the University of Padua Department of Pediatrics applies such model for procedural pain management. We describe activities of Service since January 1, 2006 on two levels: education and training for territorial services and sedation-analgesia when required for invasive and painful procedures. Since 2006 to date, the Service team produced an internal protocol for procedural sedation, developed two master courses, and organized a training program for procedural pain management in the territorial context. Procedural sedation-analgesia service provided overall 10,832 sedations to perform 14,264 procedures for 3,815 patients, median age of 6 years old. The most frequently performed procedures were lumbar puncture and bone marrow aspiration, followed by gastroscopy and bronchoscopy. Most frequently administered drug combinations were local analgesia + intravenous midazolam alone or midazolam and propofol or midazolam and propofol and ketamine; most frequently used non-pharmacological methods were distraction using cartoons and bubbles. Minor adverse events were recorded in 281 cases (2.5%), the most common being desaturation (2.1%). In conclusion, our model functions on two integrated levels, and it can be considered generally applicable as a solution for pain management.     

Pain management and the effect of guidelines in neonatal units in Austria, Germany and Switzerland

BACKGROUND: Painful invasive procedures are frequently performed on preterm infants admitted to a neonatal intensive care unit (NICU). The aim of the present study was to investigate current pain management in Austrian, German and Swiss NICU and to identify factors associated with improved pain management in preterm infants. METHODS: A questionnaire was sent to all Austrian, German and Swiss pediatric hospitals with an NICU (n = 370). Pain assessment and documentation, use of analgesics for 13 painful procedures, presence of written guidelines for pain management and the use of 12 analgesics and sedatives were examined. RESULTS: A total of 225 units responded (61%). Pain assessment and documentation and frequent analgesic therapy for painful procedures were performed more often in units using written guidelines for pain management and in those treating >50 preterm infants at <32 weeks of gestation per year. This was also the case for the use of opioid analgesics and sucrose solution. Non-opioid analgesics were used more often in smaller units and in units with written guidelines. There was a broad variation in dosage of analgesics and sedatives within all groups. CONCLUSION: Pain assessment, documentation of pain and analgesic therapy are more frequently performed in NICU with written guidelines for pain management and in larger units with more than 50 preterm infants at <32 weeks of gestation per year.     

Managing painful procedures in children with cancer

Children with cancer experience repeated invasive and painful medical procedures. Pain and distress does not decrease with repeated procedures and may worsen if pain is not adequately managed. In 1990, the first recommendations on the management of pain and anxiety associated with procedures for children with cancer were published. Guiding principles described in the recommendations continue to hold true today: maximize comfort and minimize pain, use nonpharmacologic and pharmacologic interventions, prepare the child and family, consider the developmental age of the child, support family and child involvement, assure provider competency in performing procedures and sedation, and use appropriate monitoring to assure safety. This article reviews these key components for managing painful procedures in children and reviews the latest pharmacological and nonpharmacological interventions most effective in minimizing pain and discomfort.     

Guidelines for procedural pain in the newborn

Despite accumulating evidence that procedural pain experienced by newborn infants may have acute and even long-term detrimental effects on their subsequent behaviour and neurological outcome, pain control and prevention remain controversial issues. Our aim was to develop guidelines based on evidence and clinical practice for preventing and controlling neonatal procedural pain in the light of the evidence-based recommendations contained in the SIGN classification. A panel of expert neonatologists used systematic review, data synthesis and open discussion to reach a consensus on the level of evidence supported by the literature or customs in clinical practice and to describe a global analgesic management, considering pharmacological, non-pharmacological, behavioural and environmental measures for each invasive procedure. There is strong evidence to support some analgesic measures, e.g. sucrose or breast milk for minor invasive procedures, and combinations of drugs for tracheal intubation. Many other pain control measures used during chest tube placement and removal, screening and treatment for ROP, or for postoperative pain, are still based not on evidence, but on good practice or expert opinions.
Conclusion: These guidelines should help improving the health care professional's awareness of the need to adequately manage procedural pain in neonates, based on the strongest evidence currently available.     

Male circumcision

Male circumcision consists of the surgical removal of some, or all, of the foreskin (or prepuce) from the penis. It is one of the most common procedures in the world. In the United States, the procedure is commonly performed during the newborn period. In 2007, the American Academy of Pediatrics (AAP) convened a multidisciplinary workgroup of AAP members and other stakeholders to evaluate the evidence regarding male circumcision and update the AAP's 1999 recommendations in this area. The Task Force included AAP representatives from specialty areas as well as members of the AAP Board of Directors and liaisons representing the American Academy of Family Physicians, the American College of Obstetricians and Gynecologists, and the Centers for Disease Control and Prevention. The Task Force members identified selected topics relevant to male circumcision and conducted a critical review of peer-reviewed literature by using the American Heart Association's template for evidence evaluation. Evaluation of current evidence indicates that the health benefits of newborn male circumcision outweigh the risks; furthermore, the benefits of newborn male circumcision justify access to this procedure for families who choose it. Specific benefits from male circumcision were identified for the prevention of urinary tract infections, acquisition of HIV, transmission of some sexually transmitted infections, and penile cancer. Male circumcision does not appear to adversely affect penile sexual function/sensitivity or sexual satisfaction. It is imperative that those providing circumcision are adequately trained and that both sterile techniques and effective pain management are used. Significant acute complications are rare. In general, untrained providers who perform circumcisions have more complications than well-trained providers who perform the procedure, regardless of whether the former are physicians, nurses, or traditional religious providers. Parents are entitled to factually correct, nonbiased information about circumcision and should receive this information from clinicians before conception or early in pregnancy, which is when parents typically make circumcision decisions. Parents should determine what is in the best interest of their child. Physicians who counsel families about this decision should provide assistance by explaining the potential benefits and risks and ensuring that parents understand that circumcision is an elective procedure. The Task Force strongly recommends the creation, revision, and enhancement of educational materials to assist parents of male infants with the care of circumcised and uncircumcised penises. The Task Force also strongly recommends the development of educational materials for providers to enhance practitioners' competency in discussing circumcision's benefits and risks with parents. The Task Force made the following recommendations:Evaluation of current evidence indicates that the health benefits of newborn male circumcision outweigh the risks, and the benefits of newborn male circumcision justify access to this procedure for those families who choose it. Parents are entitled to factually correct, nonbiased information about circumcision that should be provided before conception and early in pregnancy, when parents are most likely to be weighing the option of circumcision of a male child. Physicians counseling families about elective male circumcision should assist parents by explaining, in a nonbiased manner, the potential benefits and risks and by ensuring that they understand the elective nature of the procedure. Parents should weigh the health benefits and risks in light of their own religious, cultural, and personal preferences, as the medical benefits alone may not outweigh these other considerations for individual families. Parents of newborn boys should be instructed in the care of the penis, regardless of whether the newborn has been circumcised or not. Elective circumcision should be performed only if the infant's condition is stable and healthy. Male circumcision should be performed by trained and competent practitioners, by using sterile techniques and effective pain management. Analgesia is safe and effective in reducing the procedural pain associated with newborn circumcision; thus, adequate analgesia should be provided whenever newborn circumcision is performed.Nonpharmacologic techniques (eg, positioning, sucrose pacifiers) alone are insufficient to prevent procedural and postprocedural pain and are not recommended as the sole method of analgesia. They should be used only as analgesic adjuncts to improve infant comfort during circumcision. If used, topical creams may cause a higher incidence of skin irritation in low birth weight infants, compared with infants of normal weight; penile nerve block techniques should therefore be chosen for this group of newborns. Key professional organizations (AAP, the American Academy of Family Physicians, the American College of Obstetricians and Gynecologists, the American Society of Anesthesiologists, the American College of Nurse Midwives, and other midlevel clinicians such as nurse practitioners) should work collaboratively to:Develop standards of trainee proficiency in the performance of anesthetic and procedure techniques, including suturing; Teach the procedure and analgesic techniques during postgraduate training programs; Develop educational materials for clinicians to enhance their own competency in discussing the benefits and risks of circumcision with parents; Offer educational materials to assist parents of male infants with the care of both circumcised and uncircumcised penises. The preventive and public health benefits associated with newborn male circumcision warrant third-party reimbursement of the procedure. The American College of Obstetricians and Gynecologists has endorsed this technical report.     

Clinical implications of unmanaged needle-insertion pain and distress in children

Increasing evidence has demonstrated that pain from venipuncture and intravenous cannulation is an important source of pediatric pain and has a lasting impact. Ascending sensory neural pain pathways are functioning in preterm and term infants, yet descending inhibitory pathways seem to mature postnatally. Consequently, infants may experience pain from the same stimulus more intensely than older children. In addition, painful perinatal procedures such as heel lancing or circumcision have been found to correlate with stronger negative responses to venipuncture and intramuscular vaccinations weeks to months later. Similarly, older children have reported greater pain during follow-up cancer-related procedures if the pain of the initial procedure was poorly controlled, despite improved analgesia during the subsequent procedures. Fortunately, both pharmacologic and nonpharmacologic techniques have been found to reduce children's acute pain and distress and subsequent negative behaviors during venipuncture and intravenous catheter insertion. This review summarizes the evidence for the importance of managing pediatric procedural pain and methods for reducing venous access pain.     

Consensus statement for the prevention and management of pain in the newborn

OBJECTIVE: To develop evidence-based guidelines for preventing or treating neonatal pain and its adverse consequences. Compared with older children and adults, neonates are more sensitive to pain and vulnerable to its long-term effects. Despite the clinical importance of neonatal pain, current medical practices continue to expose infants to repetitive, acute, or prolonged pain. DESIGN: Experts representing several different countries, professional disciplines, and practice settings used systematic reviews, data synthesis, and open discussion to develop a consensus on clinical practices that were supported by published evidence or were commonly used, the latter based on extrapolation of evidence from older age groups. A practical format was used to describe the analgesic management for specific invasive procedures and for ongoing pain in neonates. RESULTS: Recognition of the sources of pain and routine assessments of neonatal pain should dictate the avoidance of recurrent painful stimuli and the use of specific environmental, behavioral, and pharmacological interventions. Individualized care plans and analgesic protocols for specific clinical situations, patients, and health care settings can be developed from these guidelines. By clearly outlining areas where evidence is not available, these guidelines may also stimulate further research. To use the recommended therapeutic approaches, clinicians must be familiar with their adverse effects and the potential for drug interactions. CONCLUSION: Management of pain must be considered an important component of the health care provided to all neonates, regardless of their gestational age or severity of illness.     

Infovac-France survey in pediatric vaccinology: How does it compare with the literature?

BackgroundImmunization is experienced as painful and may be responsible for needle fear and noncompliance. There are rare evidence-based methods to reduce pain and improve comfort during immunization. There are no French immunization guidelines summarizing the good practices, based on recent studies. This study focused on the methods used by physicians and how they compared with those validated by clinical trials.MethodsAn online questionnaire was sent to the practitioners from the Infovac network, and a PubMed bibliographic search was conducted.ResultsAlmost 2000 doctors responded to this survey. Purging the needle was a habit in 77.9% of them and aspiration before injection in 21.1%. Only one-quarter of the responding doctors injected in the deltoid muscle between 15 and 24 months, and some injected in the buttocks at any age. Half of the physicians vaccinated infants in their parent's arms, children were seated with half of the pediatricians and only one-third of the general practitioners (GPs), and teenagers were seated when vaccinated by three-quarters of the doctors. Anesthetic creams were used by 46.6% of the physicians, mostly by pediatricians (61.9%), and for infants. Breastfeeding was suggested by three-quarters of the physicians for infants under 4 months of age, and sugared solutions were used by 55.5% of the pediatricians and 32.3% of the GPs. Half of the doctors used rocking and cuddling for babies under 24 months of age and toys between 11 and 24 months.ConclusionMany methods are available to distract and improve comfort during immunization. Physicians should choose those they prefer, adjusting for the child's age. There should be French guidelines for immunization techniques, based to the latest clinical surveys, to help improve immunization practice.     

The management of pain in children

There are now safe and effective techniques which can decrease significantly the amount of pain a child will experience in an acute care setting. For such techniques to work, however, the importance of pain management in children must be recognized. It should be assumed that anything that will hurt an adult will also hurt a child and that children are, in fact, often more sensitive to hospital procedures than are adults. Pain assessment should be a part of the child's care plan, and developmentally appropriate ways of recognizing pain should be in place in all hospitals that care for children. Behavioral and pharmacologic techniques should be tailored to the needs of the individual child. The skill of physicians should be assessed not only by their cure of illnesses, but by the comfort they provide in the process.     

Validation of the Premature Infant Pain Profile-Revised (PIPP-R)

Objectives

To examine the construct validity, inter-rater reliability, and feasibility of the Premature Infant Pain Profile-Revised in infants of varying gestational ages, diagnoses, and procedures.

Methods

A prospective cross-over study with infants in three gestational age groups (26–31, 32–36, and ≥ 37 weeks) at three university-affiliated Neonatal Intensive Care Units in Canada. One hundred and ninety five bedside nurses and expert raters rated 202 hospitalized infants' pain during scheduled procedures using the measure. An expert rater and a nurse independently assessed infants' pain scores, using the Premature Infant Pain Profile-Revised, during 246 scheduled pairs of painful and non-painful procedures in the 202 infants. Nurses also completed a feasibility survey on using the measure in a clinical setting. To establish construct validity, pain scores were computed during painful and non-painful procedures. Inter-rater reliability between pain experts and nurses was calculated. A 5-point Likert scale was used to measure feasibility in terms of clarity, ease of use, and time to complete.

Results

Irrespective of gestational age, Premature Infant Pain Profile-Revised scores were significantly higher during painful procedures (mean 6.7 [SD 3.0]) compared to non-painful procedures (mean 4.8 [SD 2.9]). There was a high degree of correlation between nurses' and experts' ratings for painful (all R² = 0.92, p < 0.001) and non-painful (all R² = 0.87, p < 0.001) procedures. Mean scores on all feasibility indicators were equal to or higher than 3.8.

Discussion

The Premature Infant Pain Profile Revised has beginning construct validation, inter-rater reliability, and is considered feasible by clinicians. Concurrent validation studies should be considered.     

Pain management in children: assessment and documentation in burn units.

Burns are considered to be among the most painful types of trauma. Especially the pain of children is often unsatisfactorily treated. This study investigates the assessment and documentation of pain by physicians and nurses in children suffering from burns. Pain management was considered sufficient in 80% of ventilated patients and in 60% of non-ventilated patients. The minority of the staff regarded pain management as sufficient during dressing changes after the acute phase and during nursing care. Thirty-eight per cent of the physicians and 58% of the nurses documented the pain. Standardized documentation was used by fewer than 20% of the staff. Pain documentation was not considered relevant for further therapy by 48% of the physicians. More than half of all participants believed that an improvement of the pain therapy performed in their hospital was necessary. Standardized documentation, an algorithm for the application of analgesics, and more training in pain management were desired by many staff members.     

Physician counselling practices and decision-making for extremely preterm infants in the Pacific Rim

OBJECTIVES: This study was undertaken to evaluate physician counselling practices and resuscitation decisions for extremely preterm infants in countries of the Pacific Rim. We sought to determine the degree to which physician beliefs, parents' opinion and medical resources influence decision-making for infants at the margin of viability. METHODS: A survey was administered to neonatologists and paediatricians who attend deliveries of preterm infants in Australia, Hong Kong, Japan, Malaysia, Taiwan and Singapore. Questions were asked regarding physician counselling practices, decision-making for extremely preterm infants and demographic information. RESULTS: Physicians counsel parents antenatally with increasing frequency as gestational age increases. Most physicians discuss infant mortality and morbidity with parents prior to delivery. Physicians less frequently discuss the option of no resuscitation of an extremely preterm infant, withdrawal of support at a later time, or financial costs to parents. Severe congenital malformations, perception of a poor future quality of life, parental wishes and a high probability of death for the infant are influential in limiting resuscitation in very preterm infants for a majority of physicians. Less influential factors are parent socioeconomic status, language barriers, financial costs for the family, allocation of national resources, moral or religious considerations, or fear of litigation. Physician thresholds for resuscitation of infants ranged between 22 and 25 weeks gestation and between 400 and 700 g birthweight. CONCLUSIONS: We report physician beliefs and practices regarding resuscitation and the counselling of parents of extremely preterm infants in Pacific Rim countries. While we find variation among countries, physician practices appear to be determined by ethical decision-making and medical factors rather than social or economic factors in each country.     

Evidenced‐based clinical practice guideline for management of newborn pain

Aim: To facilitate the uptake of evidence and to reduce the evidence practice gap for management of newborn pain through the development of a clinical practice guideline. Method: An audit of practice and an appraisal of clinical practice guidelines were undertaken to establish current practices and guideline availability for the management of newborn pain in 23 hospitals in Australia. Guidelines were appraised using the Appraisal of Guidelines for Research and Evaluation instrument. A literature search was undertaken to acquire the evidence for best practice for management of newborn pain. Results: Neonatal units in 17 hospitals had clinical practice guidelines. Each was peer reviewed and assessed according to the domains of the Appraisal of Guidelines for Research and Evaluation instrument. There was lack of consistency across the guidelines. As a result, a best practice guideline was developed based on current best evidence and the Royal Australian College of Physicians recommendations. To facilitate an ongoing compliance with the guideline, an audit tool was included together with algorithms for procedural pain and pain assessment. Conclusion: The clinical practice guideline can be used by clinicians in varying settings such as the neonatal intensive care and special care unit. The document can be used to support existing practices or challenge clinicians to close the evidence practice gap for the management of newborn pain.     

Prevention and management of pain in the neonate: an update

The prevention of pain in neonates should be the goal of all caregivers, because repeated painful exposures have the potential for deleterious consequences. Neonates at greatest risk of neurodevelopmental impairment as a result of preterm birth (ie, the smallest and sickest) are also those most likely to be exposed to the greatest number of painful stimuli in the NICU. Although there are major gaps in our knowledge regarding the most effective way to prevent and relieve pain in neonates, proven and safe therapies are currently underused for routine minor yet painful procedures. Every health care facility caring for neonates should implement an effective pain-prevention program, which includes strategies for routinely assessing pain, minimizing the number of painful procedures performed, effectively using pharmacologic and nonpharmacologic therapies for the prevention of pain associated with routine minor procedures, and eliminating pain associated with surgery and other major procedures.     

Non-pharmacological pain management in the neonatal intensive care unit: Managing neonatal pain without drugs

Premature infants hospitalized after birth are exposed to repeated painful procedures as part of their routine medical care. Early neonatal exposure to unmanaged pain has been linked to numerous negative long-term outcomes, such as the development of pain hypersensitivity, detrimental psychological symptomology, and altered neurodevelopment. These findings emphasize the crucial role of pain management in neonatal care. The aim of this article is to give an overview of evidence-based non-pharmacological pain management techniques for hospitalized neonates. Research supporting the effectiveness of various proximal, distal, and procedural pain management methods in neonates will be presented. Additionally, understanding the larger biopsychosocial context of the infant that underpins the mechanisms of these pain management methods is essential. Therefore, two important models that inform non-pharmacological approaches to infant pain management (DIAPR-R [The Development of Infant Acute Pain Responding-Revised], Attachment Theory) will be discussed.     

How pediatricians counsel parents when no "best-choice" management exists: lessons to be learned from hypoplastic left heart syndrome

BACKGROUND: Hypoplastic left heart syndrome (HLHS) is a life-threatening congenital cardiac defect. Three mutually exclusive management options exist: the Norwood palliative procedure, cardiac transplantation, and comfort care without surgical intervention. OBJECTIVES: To assess which management options are presented to parents of infants with HLHS, and to determine what factors influence physicians' recommendations. DESIGN: Cross-sectional survey. SETTING: Fourteen of the largest pediatric cardiac surgery centers in the United States. PARTICIPANTS: Attending physicians in neonatology, cardiology, critical care practice, and cardiac surgery. INTERVENTION: A survey was distributed asking physicians what options they present to parents of infants with HLHS and what their recommendations are in general, as well as physician perceptions of HLHS outcomes and demographic information. MAIN OUTCOME MEASURES: Which options physicians discuss and which they recommend. RESULTS: Of 454 eligible physicians 257 (57%) responded to the survey, of which 110 make treatment recommendations to parents. Neonatologists were least likely to recommend surgery. Physicians who recommend surgery recommend procedures performed at their own institution over those performed elsewhere (odds ratio, 2.80; 95% confidence interval, 2.24-3.51). Twenty-six percent of physicians do not discuss nonsurgical management, and 25% of those at centers that do not perform cardiac transplantation do not discuss this option. The recommendations physicians make to parents are poorly associated with their predictions of postoperative outcomes. CONCLUSIONS: Physician recommendations to parents are poorly associated with their estimates of outcomes, and some physicians recommend the treatment preferred at their own institution over other options even when they predict better outcomes from another approach. Further, many physicians do not disclose all reasonable management options to parents of infants with HLHS. These findings raise doubts as to whether parents are given adequate information to make truly informed decisions.