Subcutaneous or intravenous opioid administration by patient-controlled analgesia in cancer pain: a systematic literature review.

CONTEXT: Opioids administered by various routes are a mainstay of tumour-related pain management. Subcutaneous or intravenous patient-controlled analgesia (PCA) with opioids is an appropriate and safe form of treatment for postoperative pain but studies on this form of administration are sparse in the setting of cancer pain despite widespread use. OBJECTIVE: To evaluate the published studies on opioids administered by subcutaneous and intravenous patient-controlled analgesia for patients with cancer pain. METHODS: Articles were identified from the Cochrane Central Register of Controlled Trials (The Cochrane Library Issue 7, 2016), PubMed (Medline; 1975 to 2016) and EMBASE (1974 to 2016). Additional reports were identified from the reference lists of retrieved papers. Studies based on original data with a focus on intravenous or subcutaneous PCA administration of opioids in patients suffering from cancer-related pain were selected. The language was restricted to Dutch, English or German. Predefined information was extracted depending on the topic. RESULTS: Fifty studies published since 1980 met the inclusion criteria. A wide range of study designs, study quality and research objectives were observed. The studies indicated use of standard or by proxy PCA in the inpatient and outpatient setting were safe and useful while significant adverse effects were rarely observed. CONCLUSION: This systematic review of the current evidence suggests PCA can be appropriately used in a wide range of clinical situations.

Gabapentin for Pain in Pediatric Palliative Care.

OBJECTIVE: Gabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). METHODS: A prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. RESULTS: Data were collected from 127 children with a median age of 4.7 years (IQR 0.1-17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. CONCLUSIONS: Gabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.

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.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS.

CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC. METHODS: A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in English over the past 5 years (2016-2020), but older articles were considered when relevant. The consensus on the fundamental points, standards of care and paper contents was reached by open discussion. RESULTS: Fundamental points were defined regarding the definition of PPC, eligibility criteria and the magnitude of the need for PPC, while standards were redefined for the following six areas: 1) clinical, developmental, psychological, social, ethical and spiritual needs; 2) end-of-life care; 3) care models and settings of care; 4) PPC in humanitarian emergencies; 5) care tools; and 6) education and training for healthcare providers. CONCLUSION: The present document, developed with the contribution of an international group of experts from different countries, experiences and models of care, provides fundamental points and standards for a wider implementation of PPC worldwide.

Pediatric palliative care provision around the world: a systematic review.

Pediatric palliative care is recommended by many organizations. Yet, there is no information available on the progress that has been made in providing this care or the gaps that still exist in provision around the world. We conducted a systematic review to address this gap in knowledge. The systematic review identified 117 peer-reviewed and non-peer reviewed resources. Based on this information, each country was assigned a level of provision; 65.6% of countries had no known activities, 18.8% had capacity building activities, 9.9% had localized provision, and 5.7% had provision that was reaching mainstream providers. Understanding the geographic distribution in the level of provision is crucial for policy makers and funders.

Audit of Psychosocial and Palliative Care Support for Children Having Allogeneic Stem Cell Transplants at the New Zealand National Allogeneic Transplant Centre.

Psychosocial and palliative care support during stem cell transplants (SCT) is known to improve outcomes. AIM: evaluate the support provided to children and families at the New Zealand National Allogeneic Stem Cell Transplant unit (NATC). METHOD: the psychosocial and palliative care support for children who received SCT between December 2012 and April 2018 was audited. RESULTS: of the 101 children who received SCT, 97% were reviewed by the social work team (SW) and 82% by the psychiatric consult liaison team (CLT) at least once during their illness. However, pre-transplant psychological assessment only occurred in 16%, and during the SCT admission, only 55% received SW support, and 67% received CLT support. Eight out of eighty-five families (9%) were offered support for siblings. Eight of the sixteen children who died were referred for pediatric palliative care (PPC) with all supported and half the families who experienced a death (n = 8; 50%) received bereavement follow up. CONCLUSION: although the majority received some social work and psychological support, auditing against the standards suggests the consistency of involvement could be improved. Referrals for PPC were inadequate and largely for end-of-life phase. Sibling support, in particular donor siblings, had insufficient psychological assessment and support. Key recommendations are provided to address this underperformance.

Palliative Care for Children in Hospital: Essential Roles.

Palliative care for children in pediatric hospitals is a vital part of the network of services supporting children with severe illness. This has been recognized, with a trend over the past decade for an increased number of pediatric palliative care (PPC) services established in pediatric hospitals. The inpatient team is in the unique position of influencing the early identification of children and their families, across the age and diagnostic spectrum, which could benefit from palliative care. These services have an opportunity to influence the integration of the palliative approach throughout the hospital, and in so doing, have the capacity to improve many aspects of care, including altering an increasingly futile and burdensome treatment trajectory, and ensuring improved symptom (physical and psychological) management.

Dyspnea in Children with Life-Threatening and Life-Limiting Complex Chronic Conditions.

BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children. OBJECTIVE: The purpose of this systematic review was to investigate the prevalence and causes of dyspnea in children with CCC and to identify the current state of research on the measurements, treatments, and the evaluation of therapeutic interventions. METHODS: A systematic literature search for relevant literature from 1990 until the present was performed using the online database PubMed. Information about prevalence, pathophysiological mechanisms, measurement, and treatment of dyspnea was extracted from all 43 eligible publications. RESULTS: The prevalence ranged widely from 17% to 80%. Breathlessness was primarily attributed to a disease-specific pathophysiology. A multidimensional approach has not been reported. Assessment of dyspnea included eight tools using either subjective self- or proxy-ratings or objective measures. Evidence for the effectiveness of various treatment approaches was low. DISCUSSION: The prevalence rates for dyspnea could be generalized across all conditions and patient subgroups. The biopsychosocial-spiritual approach was not addressed by the studies. There is a lack of an adequate and validated measurement tool that can be applied to children of various ages and diagnoses, communication ability, and practicable across different settings. Most found treatment approaches lacked good evidence in children. CONCLUSION: Although the prevalence rate of dyspnea in pediatric palliative care is high, it has been poorly studied.

The symptoms of dying children.

The purpose of this study was to examine the symptom prevalence, characteristics, and distress of children dying in hospital. Symptoms during the last week of life were obtained from the medical records. Symptoms and their characteristics during the last day of life were determined by nurse interview. Thirty children with an average age of 8.9 years were evaluated. The dominant disease process was cancer (n=18), most likely location of death intensive care (n=20), and major physiological disturbances at the time of death respiratory failure (n=9) and encephalopathy (n=9). The majority of children (90%) did not have a pre-existing Do Not Resuscitate (DNR) order and 58% of these children had this addressed for the first time in the last day of life. The mean (+/-SD) number of symptoms per patient in the last week of life was 11.1+/-5.6 and six symptoms occurred with a prevalence of 50% or more. The location of death had a significant (P<0.02) impact on the mean number of symptoms: ward (14.3+/-6.1) vs. intensive care (9.5+/-4.7). In general, symptoms in the last day of life were not associated with a high level of distress. In summary, the symptom burden of dying children is high. Symptoms were, at times, distressing but children were generally comfortable. The findings suggest the application of the palliative care paradigm and a more aggressive approach to symptom control to all areas of the hospital may prove beneficial to dying children.

Opioid rotation in children with cancer.

The purpose of this retrospective study was to determine the therapeutic value of opioid rotation in a large pediatric oncology center. The details for opioid prescriptions, over the course of a year, were obtained from the medical records of children with cancer who had a rotation of opioid during their admission. Twenty-two children or 14% of children on opioid therapy underwent 30 opioid rotations. Mucositis was the cause of pain in 19 (70%) children, bone pain in 3 (11%) children, and postoperative, visceral, or neuropathic pain in the remainder. The opioid was rotated either for excessive side effects with adequate analgesia (70%), excessive side effects with inadequate analgesia (16.7%), or tolerance (6.7%). Five (23%) children required two rotations, 3 during the same admission. The favored rotations were morphine to fentanyl in 20 (67%) children and fentanyl to hydromorphone in 6 (20%). Adverse opioid effects were resolved in 90% of cases, all failures occurred when morphine was rotated to fentanyl. There was no significant loss of pain control or increase in mean morphine equivalent dose requirements. Opioid rotation had a positive impact on managing dose-limiting side effects of, or tolerance to, opioid therapy during cancer pain treatment in children. This was accomplished without loss of pain control or having to significantly increase the dose of opioid therapy.

Characteristics influencing location of death for children with life-limiting illness.

OBJECTIVE: To determine whether demographic and diagnostic characteristics were associated with location of death in a series of children with life-limiting illnesses. DESIGN: A population-level case series was carried out by reviewing mortality records. Sociodemographic characteristics, diagnosis and referral to paediatric palliative care (PPC) were analysed for association with location of death. SETTING: New Zealand PARTICIPANTS: Children and young people aged 28 days-18 years who died from a life-limiting illness between 2006 and 2009 inclusive. MAIN OUTCOME MEASURES: Location of death-home, hospital, other. RESULTS: Of 494 deaths, 53.6% (256/494) died in hospital and 41.9% (203/494) died at home. Asian (OR=2.66, 95% CI 1.17 to 6.04) and Pacific children (OR=2.22, 95% CI 1.15 to 4.29) had an increased risk of death in hospital compared with European children, while children with cancer (adjusted OR=0.48, 95% CI 0.3 to 0.75) and children referred to the PPC service (adjusted OR=0.60, 95% CI 0.38 to 0.96) had a decreased risk. Population-attributable risk for referral to the PPC service was 28.2% (95% CI 11.25 to 47.75). CONCLUSIONS: Most children in New Zealand with a life-limiting illness die in hospital with a significant influence resulting from ethnic background, diagnosis and referral to the PPC service. These findings have implications for resourcing PPC services and end-of-life care.

International multiprofessional course in pediatric palliative care: benefits and challenges.

BACKGROUND: The "International Paediatric Palliative Care Course" (IPPCC) was held for the second time in Germany. The goals of the course were to impart knowledge and skills, to share experience and network, and to improve multiprofessional work. METHODS: Design, content, and rationale for the course were described. Participants who had attended the first and second course were compared with respect to place of origin, demographics, and professional background. The reasons for attending the course were analysed. RESULTS: Health care professionals from 35 countries attended the two courses, including physicians, nurses, psychologists, social workers, and others. The major reasons for coming were to acquire knowledge and skills and to network with other professionals. The international multiprofessional course included lectures and workshops on specific challenges in pediatric palliative care as well as practical demonstrations. CONCLUSION: The IPPCC was designed to meet the challenges arising for the multiprofessional participants coming from a variety of professions, countries with diverse resources, needs, and approaches to practice. Future courses might include additional sessions on research, development of pediatric palliative care services, as well as discipline-specific sessions. Funding is necessary to specifically support professionals coming from low-income economies.

Vincristine for the treatment of Kasabach-Merritt syndrome: recent New Zealand case experience.

AIMS: To present a case series showing efficacious use of vincristine in treating Kasabach-Merritt syndrome (KMS). METHODS: The case notes of four children treated for KMS by the authors with corticosteroids and vincristine were reviewed. Specific attention was paid to the efficacy and adverse effects of each therapeutic agent. RESULTS: The age of presentation ranged from birth to 11 months. Initial treatment with high dose corticosteroids was uniformly ineffective, and in 2 cases, prolonged use caused significant side-effects. Subsequent or concurrent treatment with vincristine was effective and well-tolerated, with no discernable side effects. The only complications were line-related. CONCLUSIONS: Kasabach-Merritt syndrome is rare, but it is associated with significant morbidity and mortality. No definitive treatment regime has been established, but the authors suggest that vincristine should be considered a first-line agent, and that the use of systemic corticosteroids should not be routine.

Post-marketing safety monitoring of a new group B meningococcal vaccine in New Zealand, 2004-2006.

New Zealand introduced a new outer membrane vesicle vaccine in 2004 to combat an epidemic of group B meningococcal disease. An Independent Safety Monitoring Board oversaw intensive safety monitoring, which included hospital surveillance, health professional reporting (passive and active) and mortality monitoring. With over three million doses administered to individuals aged under 20 years, the monitoring results provide consistent evidence supporting the vaccine's safety.