Assessment and Treatment of Pain in Hospitalized Children at a Tertiary Children's Hospital: A Cross-Sectional Mixed Methods Survey.

(1) Background: Acute pain in hospitalized children remains under-recognized and under-treated. Our objective is to benchmark pain assessment, documentation, treatment, and patient experience in children admitted to a US children's hospital. (2) Methods: A cross-sectional, mixed-method survey of pain for children hospitalized ≥24 h. Charts were reviewed for modalities of pain assessment and treatment for all inpatients. If pain was documented, patients/caregivers were surveyed regarding their experience with pain and its management. (3) Results: Chart review: All 107 patients had ≥1 pain score documented. A total of 47 patients had a pain score ≥0, 35 (74.5%) of whom had ≥1 moderate-severe score. Seventy (65.4%) patients received ≥1 intervention for pain, including medications from ≥1 class (e.g., opioids) (n = 55, 51.4%) and/or integrative/non-pharmacologic intervention(s) (n = 39, 36.4%). There were assessment and documentation gaps. Patient survey: A total of 39 (83.0%) interviews were attempted; 25 (53.2%) were completed. The worst pain was mostly caused by acute illness (n = 13, 52%) and painful procedures (n = 10, 40%). Suggestions for improvement included increasing the use of integrative modalities and optimizing patient-clinician communication. (4) Conclusions: All patients admitted ≥24 h had ≥1 pain score documented; however, gaps in documentation were common. Multimodal treatment and integrative modalities were underutilized. Procedures were a frequent cause of under-treated pain, prompting an institution-wide quality improvement project.

Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant.

OBJECTIVES: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). METHODS: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. RESULTS: On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. CONCLUSIONS FOR PRACTICE: The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.

What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent­child outcomes.

The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes.

BACKGROUND AND OBJECTIVES: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository. METHODS: Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead). RESULTS: Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%). CONCLUSIONS: Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.

Education in Palliative and End-of-Life Care-Pediatrics: Curriculum Use and Dissemination.

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.

A descriptive analysis of pediatric post-tonsillectomy pain and recovery outcomes over a 10-day recovery period from 2 randomized, controlled trials.

Pediatric tonsillectomy involves an often painful and lengthy recovery period, yet the extended recovery process is largely unknown. This article describes postoperative recovery outcomes for 121 children aged 4 to 15 (mean 6.6 years, SD = 2.3) years enrolled in 1 of 2 clinical trials of analgesia safety and efficacy after tonsillectomy. Postoperative analgesia included scheduled opioid analgesic plus acetaminophen/ibuprofen medication use (first 5 days) and "as-needed" use (last 5 days). Clinical recovery as measured daily by the Parents' Postoperative Pain Measure (PPPM; an observational/behavioral pain measure), children's self-reported pain scores, side-effect assessments, need for unanticipated medical care, and satisfaction with recovery over 10 days was assessed. Higher Parents' Postoperative Pain Measure scores were correlated with poorer sleep, receipt of breakthrough analgesics, distressing side effects, higher self-reported pain scores, and need for unanticipated medical care. Higher self-reported pain scores were associated with more distressing adverse events, including nausea, vomiting, insomnia, lower parent satisfaction, and unplanned medical visits and hospitalizations. Pain and symptoms improved over time, although 24% of the children were still experiencing clinically significant pain on day 10. Scheduled, multimodal analgesia and discharge education that sets realistic expectations is important. This study adds to the emerging body of literature that some children experience significant postoperative pain for an extended period after tonsillectomy.

Pain Management In Pediatric Patients With Postural Orthostatic Tachycardia Syndrome: Current Insights.

Pediatric patients with postural orthostatic tachycardia syndrome (POTS) often present with co-occurring struggles with chronic pain (POTS+pain) that may limit daily activities. POTS is a clinical syndrome characterized by orthostatic symptoms and excessive postural tachycardia without orthostatic hypotension. Active research from the medical and scientific community has led to controversy over POTS diagnosis and treatment, yet patients continue to present with symptoms associated with POTS+pain, making treatment recommendations critical. This topical review examines the literature on diagnosing and treating pediatric POTS+pain and the challenges clinicians face. Most importantly, clinicians must employ an interdisciplinary team approach to determine the ideal combination of pharmacologic (e.g., fludrocortisone), non-pharmacologic (e.g., physical therapy, integrative medicine), and psychological (e.g., cognitive behavioral therapy, psychoeducation) treatment approaches that acknowledge the complexity of the child's condition, while simultaneously tailoring these approaches to the child's personal needs. We provide recommendations for treatment for youth with POTS+pain based on the current literature.

Recent advances in pain treatment for children with serious illness.

Pain is a common distressing symptom in children receiving pediatric palliative care. Both in children with cancer, but especially in children with progressive neurodegenerative and chromosomal conditions with CNS impairment pain is common, and often under-recognized and undertreated. Multimodal analgesia for children with serious illness acts synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality. Successful pain treatment and prevention usually include integrative 'nonpharmacological' therapies, rehabilitation, psychology and spirituality in addition to pharmacology and regional anesthesia. This review article will address these effective components of multimodal pediatric analgesia and present starting doses of basic analgesia, opioids and adjuvants analgesia in infants, children and adolescents with serious illness.

Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics.

CONTEXT: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. OBJECTIVES: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. METHODS: Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. RESULTS: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future "Trainers," thus becoming "Master Facilitators." Between 2012-May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions. CONCLUSION: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.

A hospital-wide initiative to eliminate or reduce needle pain in children using lean methodology.

INTRODUCTION: Pain remains common, underrecognized, and undertreated in children's hospitals and pediatric clinics. Over 200,000 patients experience needle pain annually in our institution, caused by blood draws, intravenous access, vaccinations, and injections on all inpatient units, emergency departments, outpatient laboratories, and ambulatory clinics. OBJECTIVES: We implemented a hospital-based, system-wide initiative called the "Children's Comfort Promise," and created a new standard of care for needle procedures that required staff to consistently offer 4 strategies: (1) topical anesthetics, (2) sucrose or breastfeeding for infants 0 to 12 months, (3) comfort positioning (including swaddling, skin-to-skin, or facilitated tucking for infants; sitting upright for children), and (4) age-appropriate distraction. METHODS: The protocol was established system-wide in one of the largest children's hospitals in the United States using a staggered implementation approach over a 3-year period to allow for unit-specific customization and facilitation of knowledge transfer from one unit to another. All departments were required to offer all 4 strategies with appropriate education at least 95% of the time. RESULTS: Comparison of baseline audits with continuous postimplementation audits revealed that wait times for services decreased, patient satisfaction increased, and staff concerns about implementation were allayed (eg, concerns about wait times and success rates of venipuncture after topical anesthesia). CONCLUSION: This is the first report of a successful system-wide protocol implementation to reduce or eliminate needle pain, including pain from vaccinations, in a children's hospital across all inpatient units, emergency departments, outpatient laboratories, and ambulatory clinics through consistent use of topical anesthesia, sucrose/breastfeeding, positioning, and distraction.

Pain Experience in a US Children's Hospital: A Point Prevalence Survey Undertaken After the Implementation of a System-Wide Protocol to Eliminate or Decrease Pain Caused by Needles.

OBJECTIVES: Pain in hospitalized children remains under-assessed and undertreated. With this study, we aim to describe results from a repeat single-day, hospital-wide survey of children's pain and its treatment after the initiation of a hospital-wide quality improvement initiative used to reduce or eliminate pain caused by needle procedures. METHODS: All patients and parents listed on the inpatient morning census, in emergency department and outpatient surgery registration lists, were invited to participate in a brief single-day point prevalence survey of their experience with pain and its management in the hospital setting. Results were compared with a survey conducted 2 years earlier, before implementation of a system-wide Children's Comfort Promise needle pain treatment and prevention protocol. RESULTS: A total of 194 children and their parents participated in the current survey. A higher percentage of children reported having no pain compared with the previous survey (33% vs 24%; P = .07; not significant) and fewer experienced severe pain (score ≥7 out of 10). Fewer children identified pain caused by needles as the cause of the worst pain (21% vs 30%), although it remained the highest reported cause of the most painful experience overall. The number of pain management strategies administered and offered to children with needle pain (distraction, positioning, numbing cream, and sucrose and/or breastfeeding for infants) increased. CONCLUSIONS: The implementation of a mandatory Comfort Promise protocol used to minimize or prevent pain caused by elective needle procedures was associated with a significant reduction in overall pain prevalence and improved use of evidence-based practices for needle pain management.

Interdisciplinary Pediatric Palliative Care Team Involvement in Compassionate Extubation at Home: From Shared Decision-Making to Bereavement.

Little is known about the role of pediatric palliative care (PPC) programs in providing support for home compassionate extubation (HCE) when families choose to spend their child's end of life at home. Two cases are presented that highlight the ways in which the involvement of PPC teams can help to make the option available, help ensure continuity of family-centered care between hospital and home, and promote the availability of psychosocial support for the child and their entire family, health care team members, and community. Though several challenges to realizing the option of HCE exist, early consultation with a PPC team in the hospital, the development of strategic community partnerships, early referral to home based care resources, and timely discussion of family preferences may help to make this option a realistic one for more families. The cases presented here demonstrate how families' wishes with respect to how and where their child dies can be offered, even in the face of challenges. By joining together when sustaining life support may not be in the child's best interest, PPC teams can pull together hospital and community resources to empower families to make decisions about when and where their child dies.

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.

A Comparison of Circumstances at the End of Life in a Hospital Setting for Children With Palliative Care Involvement Versus Those Without.

CONTEXT: Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement. OBJECTIVES: The objective of this study was to compare circumstances before death in children who spent their last days of life in an inpatient pediatric hospital setting, with or without PPC provider involvement during their inpatient stay. METHODS: Retrospective chart review of medical records of children for the last inpatient stay that resulted in death at a children's hospital setting between January 2012 through June 2013. The setting was a free-standing, 385-bed tertiary care children's hospital. RESULTS: Charts were reviewed for 114 children between 0 and 18 years of age, who were hospitalized for at least 24 hours before their death. Half of the children who died as inpatients were infants (median age five weeks). Children who received an inpatient PPC consult (25% of the sample) experienced 1) a higher rate of pain assessments, 2) better documentation around specific actions to manage pain, 3) greater odds of receiving integrative medicine services, 4) fewer diagnostic/monitoring procedures (e.g., blood gases, blood draws, placements of intravenous lines) in the last 48 hours of life, and 5) nearly eight times greater odds of having a do-not-resuscitate order in place at the time of death. CONCLUSION: The integration of a PPC team was associated with fewer diagnostic/monitoring procedures and improved pain management documentation in this study of 114 children who died as inpatients.

Methadone conversion in infants and children: Retrospective cohort study of 199 pediatric inpatients.

OBJECTIVE: Methadone administration has increased in pediatric clinical settings. This review is an attempt to ascertain an equianalgesic dose ratio for methadone in the pediatric population using standard adult dose conversion guidelines. SETTING: US tertiary children's hospital. PATIENTS: Hospitalized pediatric patients, 0-18 years of age. MAIN OUTCOME MEASURES: A retrospective chart review was conducted for patients who were converted from their initial opioid therapy regimen (morphine, hydromorphone, and/or fentanyl) to methadone. The primary endpoint was whether or not a dose correction was needed for methadone in the 6 days following conversion using standard dose conversion charts for adults. Documented clinical signs of withdrawal, unrelieved pain, or oversedation were examined. RESULTS: The majority (53.7 percent) of the 199 children were converted to methadone on intensive care units prior extubation or postextubation. The mean conversion ratio was 23.7 mg of oral morphine to 1 mg of oral methadone (median, 18.8 mg:1 mg, SD=25.7). Most patients experienced an adequate conversion (n=115, 57.8 percent), while 83 (41.7 percent) appeared undermedicated, and one child was oversedated. There were no associations found with conversion ratios for initial morphine dose, days to conversion, or effect of withdrawal of concomitant agents with potential for withdrawal. CONCLUSIONS: Opioid conversion to methadone is commonly practiced at our institution; however, dosing was significantly lower compared to adult conversion ratios, and more than 40 percent of children were undermedicated. The majority of children in this study received opioids for sedation while intubated and ventilated; therefore, safe and efficacious pediatric methadone conversion rates remain unclear. Prospective studies are needed.

Tramadol versus codeine/acetaminophen after pediatric tonsillectomy: A prospective, double-blinded, randomized controlled trial.

OBJECTIVE: Tonsillectomy is one of the most common pediatric surgical procedures performed in the United States. The postoperative period can be particularly painful, and there is currently no consensus on an optimal analgesic regimen. The objective of this study was to evaluate efficacy and safety of the single drug tramadol versus codeine/acetaminophen post-tonsillectomy. DESIGN: Prospective, double-blinded, randomized controlled trial. SETTING: Large, Midwestern US pediatric hospital. PATIENTS: Eighty-four children aged 4-15 years who underwent a tonsillectomy (with or without adenoidectomy) procedure were randomized and 74 were included in the analysis. INTERVENTIONS: Group 1 received liquid codeine/acetaminophen for 10 days post-tonsillectomy (5 days scheduled, followed by 5 days as-needed). Group 2 received liquid tramadol for 10 days post-tonsillectomy (5 days scheduled, followed by 5 days as-needed). MAIN OUTCOME MEASURES: Efficacy and side effects were evaluated using a 10-day take-home diary that was completed by parents. RESULTS: Children in both study arms reported adequate post-tonsillectomy pain management without significant differences between groups in pain scores. Oversedation was significantly higher on the day of surgery in the codeine/acetaminophen group, and itching was experienced by significantly more children in the tramadol group during the postoperative period. CONCLUSIONS: As part of multimodal analgesia, scheduled plus as-needed tramadol may be considered for children in the postoperative setting due to its analgesic properties, low potential for side effects, and good safety profile.

Pain Outcomes in a US Children's Hospital: A Prospective Cross-Sectional Survey.

BACKGROUND AND OBJECTIVES: Pain in hospitalized children may be underrecognized and undertreated. The objective of this survey was to benchmark pain prevalence, intensity, assessment, and pharmacologic as well as integrative treatment of pain in inpatients in a US children's hospital. METHODS: This was a single-day, cross-sectional survey and electronic medical record review of inpatients who received medical care at a pediatric hospital. Inpatients and emergency department patients were asked to report their experience with pain and its management during the previous 24 hours. RESULTS: Of 279 inpatients listed on the morning census, 178 children and parents were located and completed the survey. Seventy-six percent had experienced pain during the previous 24 hours, usually acute or procedural pain, 12% of whom possibly suffered from chronic pain. Twenty percent of all children surveyed experienced moderate and 30% severe pain in that time period. The worst pain reported by patients was caused by needle pokes (40%), followed by trauma/injury (34%). Children and their parents rated 5 integrative, nonpharmacologic modalities as more effective than medications. Pain assessments and management were documented in the medical record for 58% of patients covering the 24-hour period before the morning census. The most commonly prescribed analgesics were acetaminophen, morphine, and ibuprofen. CONCLUSIONS: Despite existing hospital policies and a pain consult team, significant room for improvement in pain management was identified. A hospital-wide, 3-year Lean quality improvement initiative on reducing pain was commenced as a result of this survey.

Improved quality of life at end of life related to home-based palliative care in children with cancer.

BACKGROUND: Nearly 2000 children die due to a malignancy in the United States annually. Emerging data suggest that home is the desired location of care for children with cancer at end of life. However, one obstacle to enrollment in a pediatric palliative care (PPC) home care program may be fear that distressing symptoms at end of life cannot be adequately managed outside the hospital. OBJECTIVE: To compare the symptom distress and quality-of-life experience for children who received concurrent end-of-life care from a PPC home care program (PPC/Oncology) with that of those who died without exposure to the PPC program (Oncology). METHODS: We conducted a retrospective survey study of a cohort of bereaved parents of children who died of cancer between 2002 and 2008 at a U.S. tertiary pediatric institution. RESULTS: Sixty bereaved parents were surveyed (50% PPC/Oncology). Prevalence of constipation and high distress from fatigue were more common in the PPC/Oncology group; other distressing symptoms were similar between groups, showing room for improvement. Children who received PPC/Oncology were significantly more likely to have fun (70% versus 45%), to experience events that added meaning to life (89% versus 63%), and to die at home (93% versus 20%). CONCLUSIONS: This is the first North American study to assess outcomes among children with cancer who received concurrent oncology and palliative home care compared with those who received oncology care alone. Symptom distress experiences were similar in groups. However, children enrolled in a PPC home care program appear to have improved quality of life and are more likely to die at home.

Long-term psychosocial outcomes among bereaved siblings of children with cancer.

CONTEXT: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes. METHODS: Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support). RESULTS: Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P < 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals. CONCLUSION: How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes.

Management of breakthrough pain in children with cancer.

Breakthrough pain in children with cancer is an exacerbation of severe pain that occurs over a background of otherwise controlled pain. There are no randomized controlled trials in the management of breakthrough pain in children with cancer, and limited data and considerable experience indicate that breakthrough pain in this pediatric patient group is common, underassessed, and undertreated. An ideal therapeutic agent would be rapid in onset, have a relatively short duration, and would be easy to administer. A less effective pharmacologic strategy would be increasing a patient's dose of scheduled opioids, because this may increase the risk of oversedation. The most common and effective strategy seems to be multimodal analgesia that includes an immediate-release opioid (eg, morphine, fentanyl, hydromorphone, or diamorphine) administered intravenously by a patient-controlled analgesia pump, ensuring an onset of analgesic action within minutes. Intranasal fentanyl (or hydromorphone) may be an alternative, but no pediatric data have been published yet for commercially available fentanyl transmucosal application systems (ie, sublingual tablets/spray, buccal lozenge/tablet/film, and nasal spray), and these products cannot yet be recommended for use with children with cancer and breakthrough pain. The aim of this paper was to emphasize the dearth of available information on treatment of breakthrough pain in pediatric cancer patients, to describe the treatment protocols we currently recommend based on clinical experience, and to suggest future research on this very important and under-researched topic.

Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution.

BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care resource utilization in an uncertain financial landscape. OBJECTIVE: The study objective was to compare pediatric hospital health care resource utilization before and after enrollment in a home PPC/hospice program. DESIGN: The study was a retrospective administrative data analysis. SETTING/SUBJECTS: The study took place in a pediatric multispecialty hospital. Data were analyzed for 425 children ages 1-21 years who received home-based PPC/hospice services between 2000 and 2010. MEASUREMENTS: Hospitalization and emergency room (ER) administrative data were examined to determine whether or not there were changes in total number of hospital admissions, length of stay (LOS), and hospital billed charges before compared to after PPC/hospice exposure. RESULTS: There was no change in average total number of admissions pre-/post-PPC/hospice exposure; however, we found a significant increase in hospital/ER admissions for children with cancer diagnoses with longer exposure to PPC/hospice services. There were statistically significant reductions in LOS and total charges for hospital-based care; reductions were more pronounced in the noncancer group. Noncancer patients with at least six months of PPC exposure showed a significant decrease in total LOS from pre- to post-program admission by an average of 38 days, and an average decrease in total hospital charges of nearly $275,000. CONCLUSION: Enrollment in home-based PPC/hospice was associated with lower hospital and ER LOS and total hospital charges as compared with the period prior to enrollment for children with noncancer diagnoses.