OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.

Introduction: Prevention and treatment of pain in pediatric patients compared with adults is often not only inadequate but also less often implemented the younger the children are. Children 0 to 17 years are a vulnerable population. Objectives: To address the prevention and treatment of acute and chronic pain in children, including pain caused by needles, with recommended analgesic starting doses. Methods: This Clinical Update elaborates on the 2019 IASP Global Year Against Pain in the Vulnerable “Factsheet Pain in Children: Management” and reviews best evidence and practice. Results: Multimodal analgesia may include pharmacology (eg, basic analgesics, opioids, and adjuvant analgesia), regional anesthesia, rehabilitation, psychological approaches, spirituality, and integrative modalities, which act synergistically for more effective acute pediatric pain control with fewer side effects than any single analgesic or modality. For chronic pain, an interdisciplinary rehabilitative approach, including physical therapy, psychological treatment, integrative mind–body techniques, and normalizing life, has been shown most effective. For elective needle procedures, such as blood draws, intravenous access, injections, or vaccination, overwhelming evidence now mandates that a bundle of 4 modalities to eliminate or decrease pain should be offered to every child every time: (1) topical anesthesia, eg, lidocaine 4% cream, (2) comfort positioning, eg, skin-to-skin contact for infants, not restraining children, (3) sucrose or breastfeeding for infants, and (4) age-appropriate distraction. A deferral process (Plan B) may include nitrous gas analgesia and sedation. Conclusion: Failure to implement evidence-based pain prevention and treatment for children in medical facilities is now considered inadmissible and poor standard of care.

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.

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. 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). 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. 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%). 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.

Background: In the present study, we investigated the situation of children who had succumbed to their malignancy in Germany as perceived by their parents. Specifically, we were interested in bereaved parents’ perspective on five essential areas: 1) symptoms and quality of life, 2) characteristics of the child's death, 3) anticipation of their child's death and care delivery, 4) end-of-life decisions and 5) impact of the child's death on the parents and perceived social support by the health care team. Materials and methods: We contacted all existing departments for paediatric oncology in the German federal state of Nordrhein Westfalen and asked them to contact all parents for participation in our study who had lost their child to cancer in 1999 and 2000. Upon agreement, we interviewed the parents utilising a validated semi-structured interview on distressing symptoms and quality of life of their children during the end-of-life care period. Results: Six of the 19 departments agreed to participate. Parents of 48 children (31 boys, 17 girls) were interviewed. The main distressing symptoms were fatigue, pain, loss of appetite, and dyspnoea according to the parents. While parents perceived pain and constipation to have been treated successfully, loss of appetite and anxiety were not treated effectively. 75% of the children died due to a progression of their malignancy. Of these, 50% obtained cancer-directed therapy at the end of life, which was negatively rated by the parents in hindsight. 48% of the children died at home even though 88% of the parents chose ‘at home’ as the most appropriate locale of death in hindsight. Parents anticipated their child's death on average 9 weeks prior to the child's death. 41% of the parents provided palliative home care for their child and the majority (88%) rated the quality of care as good or very good. 64% discussed end-of-life decisions with the health care team, 36% did not have a discussion. Parents were clearly affected by their child's death. However, 15% of the parents were not contacted by the health care team following the child's death. Conclusions: The present study demonstrated that psychological symptoms (e.g. anxiety) are frequent symptoms in the end-of-life care period and cause severe suffering in the children. Questions in terms of benefits and costs of cancer-directed therapy in the end-of-life care period need to be addressed in future prospective studies. Parents’ perspective on their child's death and related end-of-life decisions highlighted the importance of communication between parents and the health care team. Future studies need to investigate potential barriers in the communication between parents and the team to optimise end-of-life decisions and hence, reduce parents’ long-term distress. In line with the previous, the present data demonstrated that there is still a lack of routine contact from the health care team following the child's death despite existing guidelines. Research is therefore needed into the implementation of guidelines for routine contact into clinical practice following a child's death. Einleitung: In der vorliegenden Untersuchung beschäftigen wir uns mit der elterlichen Sicht der Situation von Kindern, die in Deutschland an bösartigen Erkankungen verstorben sind. Dabei interessierten wir uns für 5 Bereiche aus der Sicht der verwaisten Eltern: 1) Symptome und Lebensqualität, 2) Charakteristika des Todes, 3) Erwartung des herannahenden Todes und Versorgung, 4) Entscheidungen in der Lebensendphase und 5) Auswirkungen des Todes auf die Eltern und Nachsorge durch das Versorgungsteam. Methodik: Alle Abteilungen für Pädiatrische Onkologie in Nordrhein-Westfalen wurden um ihre Teilnahme gebeten und mit den Eltern in Kontakt zu treten, deren Kinder im Zeitraum von 1999-2000 an Krebs verstorben waren. Bei Einverständnis der Eltern interviewten wir diese mit einem semi-strukturierten Fragebogen. Ergebnisse: Sechs der 19 Abteilungen erklärten sich zur Teilnahme bereit. Eltern von 48 Kindern (31 Jungen, 17 Mädchen) wurden interviewt. Die belastendsten Symptome aus Sicht der Eltern waren Erschöpfung, Schmerz, Appetitlosigkeit und Dyspnoe. Während die Eltern Schmerz und Obstipation als gut behandelt ansahen, wurde Appetitlosigkeit und Angst aus ihrer Sicht nicht erfolgreich behandelt. 75% der Kinder verstarben aufgrund der Progredienz der Erkrankung. Von diesen erhielten 50% eine antineoplastische Therapie in der Lebensendphase, die im Nachhinein negativ von den Eltern beurteilt wurde. 48% der Kinder verstarben zu Hause, obwohl im Nachhinein 88% Zuhause als ihren Wunschort für den Tod des Kindes angaben. Die Eltern erahnten den Tod ihres Kindes im Durchschnitt 9 Wochen vorher. 41% der Eltern boten ihrem Kind pädiatrische Palliativversorung zu Hause an, und die Mehrzahl bewertete die Qualität der Versorgung als gut oder sehr gut. 64% diskutierten Entscheidungen in der Lebensendphase (z. B. Reanimation) mit dem Versorgungsteam, 36% hatten keinen Austausch. 15% der Eltern wurden nach dem Tod des Kindes nicht von dem Versorgungsteam kontaktiert. Schlussfolgerungen: Die vorliegende Studie hat gezeigt, dass psychologische Symptome (z. B. Ängste) häufige Symptome in der Lebensendphase sind und zu erheblichen Leiden führen können. Fragen des Für und Wider von Tumortherapie in der Lebensendphase müssen in zukünftigen Studien adressiert werden. Die elterliche Perspektive und die damit zusammenhängenden Entscheidungen zeigen die Notwendigkeit von Kommunikation zwischen den Eltern und dem Versorgungsteam. Zukünftige Studien sollten die Barrieren in der Kommunikation erforschen, um Entscheidungen in der Lebensendphase zu optimieren und damit die Belastung der Eltern langfristig zu reduzieren. Damit zusammenhängend hat die vorliegende Studie gezeigt, dass es nach wie vor und trotz bestehender Leitlinien einen Mangel an Nachsorge von Seiten des Versorgungsteams gibt. Eine Erforschung der Implementierung von Leitlinien zur Nachsorge in den klinischen Alltag ist indiziert.

Primary pain disorders (formerly “functional pain syndromes”) are common, under-diagnosed and under-treated in children and teenagers. This manuscript reviews key aspects which support understanding the development of pediatric chronic pain, points to the current pediatric chronic pain terminology, addresses effective treatment strategies, and discusses the evidence-based use of pharmacology. Common symptoms of an underlying pain vulnerability present in the three most common chronic pain disorders in pediatrics: primary headaches, centrally mediated abdominal pain syndromes, and/or chronic/recurrent musculoskeletal and joint pain. A significant number of children with repeated acute nociceptive pain episodes develop chronic pain in addition to or as a result of their underlying medical condition “chronic-on-acute pain.” We provide description of the structure and process of our interdisciplinary, rehabilitative pain clinic in Minneapolis, Minnesota, USA with accompanying data in the treatment of chronic pain symptoms that persist beyond the expected time of healing. An interdisciplinary approach combining (1) rehabilitation; (2) integrative medicine/active mind-body techniques; (3) psychology; and (4) normalizing daily school attendance, sports, social life and sleep will be presented. As a result of restored function, pain improves and commonly resolves. Opioids are not indicated for primary pain disorders, and other medications, with few exceptions, are usually not first-line therapy.