Palliative care for children: methodology for the development of a national clinical practice guideline
child; article; human; palliative therapy; systematic review; advance care planning; randomized controlled trial; shared decision making; practice guideline; therapy; psychosocial care; qualitative research; bereavement; drug administration; special situation for pharmacovigilance; evidence based medicine; methodology
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
van Teunenbroek KC; Kremer LCM; Verhagen AAE; Verheijden JMA; Rippen H; Borggreve BCM; Michiels EMC; Mulder RL
BMC 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="http://doi.org/10.1186/s12904-023-01293-3" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01293-3</a>
Influence of Palliative Care on Medical Treatment of Pediatric Patients with Complex Chronic Diseases at Cook Children's Medical Center
Data Analysis Software; Human; Electronic Health Records; Length of Stay; Child; Hospitalization; Patient Care; Texas; Descriptive Statistics; Chi Square Test; Chronic Disease -- Therapy -- In Infancy and Childhood; Drug Administration; Hospitals Pediatric -- Texas; Medical Orders; Palliative Care -- Utilization; Wilcoxon Rank Sum Test
Background: Literature in adult palliative care (PC) boasts fewer invasive procedures, shorter lengths of stay, and decreased cost of care. Benefits of pediatric PC are under-researched and are important to identify to optimize care. Objective: Our aim was to estimate the influence and utilization of PC on pediatric patient care. Design: We evaluated the electronic medical record of 43 patients at Cook Children's Medical Center (CCMC) with complex chronic conditions, who died between January 1, 2013, and December 31, 2014, comparing the length and frequency of hospitalizations, number of medications administered and procedures performed, and established limits of resuscitation between patients who received PC and those who did not. Measurements: Data analyses were performed using SAS Enterprise (version 6.1; SAS Institute, Inc., Cary, NC). Continuous variables were described as medians and ranges and analyzed with Wilcoxon rank-sum test for ordinal data. Categorical variables were described as percentages and analyzed with chi-square test of independence. Repeated-measures analyses were performed utilizing multilevel linear modeling, which examined the data at the level of the 236 visits rather than the 43 patients. Results: Twelve (28%) eligible patients were seen by PC. PC patients had more hospitalizations, longer lengths of stay, and fewer medications and procedures than those patients without PC services. PC patients were also more likely to have a medical orders for scope of treatment in place. Conclusion: These data demonstrate that PC services at CCMC are underutilized and support the need for PC services by decreased medications and procedures and identified family wishes for medical treatment.
Seddighzadeh RP; Lawrence K; Hamby T; Hoeft A
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2018.0079" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0079</a>
Palliative Care in the Neonatal Intensive Care Unit: An Evolutionary Concept Analysis of Uncertainty in Anticipated Loss
concept analysis; neonatal intensive care unit; newborn intensive care; palliative therapy; uncertainty; article; complication; confusion; diagnosis; drug administration; genetic disorder; genetic screening; human; infant; Infant Newborn; neonatal nurse; nurse; Palliative Care; prognosis
Background: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no longer have the descriptive power to clarify new phenomena endured by parents in the changing neonatal landscape. A current concept analysis examining uncertainty in anticipated loss is necessary to generate knowledge concurrently with deviations observed in the neonatal intensive care unit. Purpose: To explore the concept of uncertainty in anticipated loss among parents of infants with genetic disorders. Methods: Following Rodgers' method of concept analysis, the concept was named, surrogate terms, antecedents, attributes, and consequences were identified from the literature, and a model case was constructed. The databases CINAHL, PubMed, and PsycINFO were used to conduct the literature search. Results: Fifteen articles provided the data for this analysis. Uncertainty in anticipated loss is a complex, nonlinear, and multifaceted experience anteceded by an ultimately terminal diagnosis, an ambiguous prognosis, and a lack of clear knowledge to guide treatment. Its attributes include a loss of control, assumptive world remodeling, role/identity confusion, and prolonged emotional complexity that consequently leads to a cyclical pattern of positive and negative outcomes. Implications: This newly defined concept empowers neonatal nurses to provide care that includes a holistic understanding of the experience of uncertainty in anticipated loss. Nurses are ideally positioned and have the responsibility to utilize this concept to become better advocates for infants and facilitators of parental wellness.
Lenington K; Dudding KM; Fazeli PL; Dick T; Patrician P
Advances in Neonatal Care
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/10.1097/ANC.0000000000001143" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000001143</a>
Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration
drug administration; Home Care Services; home care services hospital-based; Palliative Care; Pediatrics; Prospective Studies; subcutaneous infusions; supportive care; symptom management
CONTEXT: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. OBJECTIVES: To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control. METHODS: Prospective observational study of patients receiving home-based subcutaneous treatment administered as part of a PPCU treatment regimen over 16 months. Analysis includes demographic and clinical variables and treatment received. RESULTS: Fifty-four different subcutaneous lines were inserted in the 15 patients included, mainly in the thigh (85.2%). The median time of needle in situ was 5.5 days (range: 1-36 days). A single drug was administered in 55.7% of treatments. The most frequently used drugs were morphine chloride (82%) and midazolam (55.7%). Continuous subcutaneous infusion was the predominant administration route (96.7%), with infusion rates oscillating between 0.1 mL/h and 1.5 mL/h. A statistically significant relationship was found between the maximum infusion rate and induration onset. Of the 54 lines placed, 29 (53.7%) had an associated complication requiring line removal. The primary cause for removal was insertion-site induration (46.3%). Subcutaneous lines were mainly used to manage pain, dyspnea, and epileptic seizures. CONCLUSION: In the pediatric palliative care patients studied, the subcutaneous route is most frequently used for administering morphine and midazolam in continuous infusion. The main complication was induration, especially with longer dwell times or higher infusion rates. However, further studies are required to optimize management and prevent complications.
García-López I; Chocarro-González L; Martín-Romero I; Vázquez-Sánchez JM; Avilés-Martínez M; Martino-Alba R
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2023.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.05.011</a>
Musculoskeletal Injections for Palliative Treatment of Neuromuscular Hip Dysplasia patients: How I Do It
child; Palliative Care; cerebral palsy; diagnosis; article; human; male; quality of life; palliative therapy; school child; surgery; adolescent; drug therapy; drug administration; hip dysplasia; steroid; hip joint; oral drug administration
This review describes our institution's standardized technique as well as potential pitfalls for therapeutic steroid injections in children with symptomatic neuromuscular hip dysplasia. Symptomatic, painful neuromuscular hip dysplasia can dramatically affect quality of life. Steroid injections are used to identify the source of perceived pain, temporarily treat pain while awaiting surgical intervention, or for therapeutic management for nonoperative hip joints.
Amaral JZ; Schultz RJ; Rosenfeld SB; Kan JH
Pediatric Radiology
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/10.1007/s00247-024-05858-z" target="_blank" rel="noreferrer noopener">10.1007/s00247-024-05858-z</a>