The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C
Children
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</a>
Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
child; article; cohort analysis; female; hospital admission; human; male; retrospective study; palliative therapy; intensive care; hospitalization; follow up; medical device; school child; home care; enteric feeding; patient referral; neurologic disease; noninvasive ventilation; communication disorder; motor dysfunction; drug combination; metabolic disorder; emergency ward; symptom assessment; place of death; bereavement support; emotional support; respiratory equipment
Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of paediatric palliative care (PPC) is scarce. Objective: This study aims to evaluate children with IMD referred to a PPC team (PPCT) and to analyse its impact on home care, decision to limit treatment (DLT), use of hospital resources (emergency department admissions - EDA, hospital admissions - HA, intensive care admissions - ICA) and end of life support. Methods: Retrospective cohort study of children with IMD referred to a specialized PPCT (2016-2022). We assessed clinical data: symptoms control, time of referral and length of the follow-up period, DLT, device dependency, use of hospital resources prior to and after referral, place of death and end-of-life support. Results: Fifteen children with IMD were referred to PPCT (8% of total referrals), with median age of 7 years (4 months - 17 years); 53% female. All children were non or pre-verbal. Most prevalent symptoms were neurologic and motor impairment (100%), respiratory and gastrointestinal (75%). 80% had tube feeding, 90% had some respiratory device (non-invasive ventilation in 23%). All children had multidrug use, with a mean of 6 drugs per child (2-9). 73% had home PPC and 80% had DLT planned. Nine children died (78% in hospital), after a mean of 17 months of follow-up (2 months to 4 years), all with DLT planned. 67% had support from PPCT at the end of life. All these families received emotional support. Decrease in EDA (10 vs 2) was noticed before and after PPCT. No impact was seen in HA and ICA (6 vs 5 and 1 vs 1, respectively) and there was a longer mean of hospitalisation stay (15 vs 32 days). Conclusion: Our cohort includes a group of children with severe, complex and neurodegenerative IMD. They need multiple medications for symptoms control, are highly dependent on medical devices and consume significant healthcare resources. Communication impairment adds complexity being a major barrier to symptom assessment. PPCT referral allowed home support, anticipated care plans development with end of life and bereavement support, as well as a tendency towards a reduction in EDA. These findings reinforce the need for holistic approach to identify and address the PPC needs of children with IMD.
Pereira MJ; Nogueira A; Grilo E; Ferreira S; Diogo L; Cancelinha C
Endocrine, Metabolic and Immune Disorders - Drug Targets
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener">10.2174/0118715303278702231019093844</a>
Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service
Child; Palliative Care; child; article; female; human; male; preschool child; palliative therapy; hospice; clinical article; intensive care; school child; documentation; Only Child; ethics; patient referral; adolescent; infant; stomach tube; deterioration; retrospective study; drug combination; conversation; nomenclature; neurologic disease; feeding difficulty; parenteral nutrition; case study; enteric feeding; neurodisability; digestive system function disorder
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. <br/>OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. <br/>RESULT(S): Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. <br/>CONCLUSION(S): 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.
Katz NT; Cooper MS; Kularatne A; Prebble A; McGrath KH; McCallum Z; Antolovich G; Sutherland I; Sacks BH
American Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://journals.sagepub.com/doi/10.1177/10499091231169497">10.1177/10499091231169497</a>
Attitudes on pain and opioid prescription practices in cystic fibrosis centers
chronic pain; cystic fibrosis; opiate; prescription; 8002-76-4 (opiate); 8008-60-4 (opiate); 53663-61-9 (opiate); Adult; Analgesia; Anxiety; Child; cyst; drug combination; Female; Human; Life Expectancy; Male; Mood; nurse; opiate addiction; Palliative therapy; Prevalence; quality of life; Questionnaire; sinus headache; thorax wall
Introduction: The high incidence and prevalence of chronic pain in patients with CF is well documented. In patient surveys, reports of intense pain range from 33% - 82% of respondents. Commonly reported sources of pain include headache, sinuses, chest pain, and arthralgias. Furthermore, pain interferes with general activities, mood and occupational performance in 41-57% of patients. These studies concluded that the prevalence of pain in CF patients may be underestimated and can greatly affect quality of life (Loganes C, et al. J Cyst Fibros. 2004;3:51-7; Lechtzin N, et al. Chest 2011;140:1598-603). While opioids can be effective for palliation of pain in an end-of-life setting, there are no data on the use of opioids for chronic pain management in the general CF population. Methods: A questionnaire concerning the prevalence and characteristics of pain in patients with CF was distributed to accredited pediatric and adult CF programs throughout the US. Additional questions addressing provider attitudes on pain management and opioid use were also included. Those respondents that do not utilize opioids at their center were able to skip 13 of the 30 questions. Results: Survey responses from 100 programs were analyzed. Responders who completed the survey included CF providers (67%), clinic coordinators (21%) and nurses (6%). Responses came from 51 adult core or affiliated centers (Adult Responders - AR), 36 from pediatric core or affiliated centers (Pediatric Responders - PR), and 13 were from combined programs. While most of the PR (71%) indicated that 0-10% of their patients experience chronic pain, 48% of AR reported that 11-25% of their patients have chronic pain. Furthermore, 43 of the AR said that >50% of those with chronic pain also have comorbid depression or anxiety. When asked to rank types of chronic pain, 56% of PR ranked sinus/headache symptoms as the most common, with GI pain as the second most common. AR ranked chest wall as the most frequent site (57%), with headache/sinus ranked next. Chest wall pain was the most common reason for prescribing opioids in adults with chronic pain. While most centers (83%) report that pain management in patients with CF is a very important or important issue, 48% of AR feel uncomfortable in prescribing opioids. A majority (66%) would prefer a pain specialist to be responsible for prescribing opioids, yet 49% of the CF providers are currently responsible for this task. Only 32% of AR use pain specialists. 88% of PR and 83% of AR would find guidelines on pain management helpful or very helpful. Conclusion: Chronic pain is common in adult CF patients, and management presents a formidable challenge to providers. Most providers would prefer not to prescribe opioids but are often doing so despite inadequate training and a lack of guidelines to follow. Providers have multiple concerns regarding potential drug side effects, most notably, the possibility of opioid addiction. As life expectancy increases for adult patients with CF, chronic pain will likely be more prevalent and problematic. The development of a guideline and/or collaboration with pain specialists will likely be beneficial to both patients and providers..
Yang Y; Mukadam Z; Laxova A; Meyer KC; Hollatz T
Pediatric Pulmonology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>