Stefan J. Friedrichsdorf

Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study

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.

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 childrens 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.

Chronic Pain in Children and Adolescents: Diagnosis and Treatment of Primary Pain Disorders in Head, Abdomen, Muscles and Joints.

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.

PAIN MANAGEMENT IN CHILDREN WITH ADVANCED CANCER AND DURING END-OF-LIFE CARE

Department of Pain Medicine and Palliative Care,Children’s Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, USA“A principle of pharmacokinetics teaches us that unless the drug reaches the site ofaction, it cannot be expected to exert its dynamic effect. With morphine the situationis that when the drug dose not reach the patient, what hope is there for pain relief?”

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.

Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer

BackgroundThere are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.Methods/designIn this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.DiscussionThrough this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.

Prevention and Treatment of Pain in Children: Toward a Paradigm Shift.

Rosenfeld et al in their recent article “Office Insertion of Tympanostomy Tubes without Anesthesia in Young Children” describe using a “papoose board for restraint” while performing a procedure resulting in severe pain for a significant number of children: a myringotomy and tube insertion. In 2016, it is inappropriate to perform elective painful procedures in children without treatment to avoid or minimize pain. We strongly disagree with the authors’ conclusion “that office insertion of tubes in young children is a feasible alternative to general anesthesia for caregivers and clinicians who are comfortable with this choice.”

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.

Principles of Pediatric Pain Management during the End-of-Life Period

More than 80% of children with a life-limiting condition such as cancer or a neurodegenerative disease suffer from pain during their last week of life. This article reviews the principles of pediatric pain management and addresses characteristics and pitfalls of integrative and pharmacological therapies during the end-of-life period of a child.Providing a good pain management for a dying child is one of the many domains of pediatric palliative care and usually requires a holistic, multidisciplinary approach and the knowledge to apply appropriate analgesic drugs in combination with integrative nondrug therapies.

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 childrens 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 Childrens 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.