Timing of palliative consultation for children during a fatal illness
childhood disease; palliative therapy; African American; article; cardiovascular disease; Caucasian; Child; cohort analysis; female; human; insurance; length of stay; major clinical study; male; Only Child; outcome assessment; private health insurance; Referral and Consultation; retrospective study
Abstract Background: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. Methods: We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. Results: The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. Conclusions: In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.
Rossfeld ZM; Miller R; Fosselman DD; Ketner AR; Tumin D; Tobias JD; Humphrey L
Hospital Pediatrics
2019
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/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Ang FJL; Finkelstein EA; Gandhi M
Pediatric Critical Care Medicine
2022
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/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</a>
Fatigue and depression in children with demyelinating disorders
adolescent; Canada; epidemiology; child behavior; disease duration; priority journal; school child; health survey; self report; cohort analysis; cross-sectional study; psychological aspect; human; article; child; female; male; controlled study; clinical article; comorbidity; childhood disease; mood; sleep; therapy; acute disseminated encephalomyelitis; demyelinating disease; depression; fatigue; multiple sclerosis; acute disseminated encephalomyelitis; demyelinating disorders; multiple sclerosis; acquired demyelinating syndromes; trajectory; characteristics; alertness
Fatigue and depression have been shown to be significant problems in children with multiple sclerosis. The rate at which these conditions occur in children with other acquired demyelinating syndromes is unknown. In this cross-sectional study, the authors evaluated 49 children with demyelinating disorders (multiple sclerosis and acute disseminated encephalomyelitis) and 92 healthy controls for depression and/or fatigue using the Behavior Assessment System for Children, Second Edition behavior and mood rating scale and Varni PedsQL Multidimensional Fatigue Scale. The parents of acquired demyelinating syndrome patients were more likely to report elevated depressive symptoms (30.8% vs 10.8%, P =.008). Elevated parent and self-reported total fatigue (25% vs 0%, P <.001, 26.7% vs 8.6%, P =.024) was seen in the patient cohort. The authors conclude that fatigue and depression are far more common in children with acquired demyelinating syndromes than in controls. Clinical attention to and implementation of effective therapies oriented toward these conditions in children with acquired demyelinating syndromes is needed. © The Author(s) 2012.
Parrish J B;Weinstock-Guttman B;Smerbeck A;Benedict R H B;Yeh E A
Journal of Child Neurology
2013
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/10.1177/0883073812450750" target="_blank" rel="noreferrer noopener">10.1177/0883073812450750</a>
Timing of palliative consultation for children during a fatal illness
article; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; outcome assessment; Caucasian; African American; cardiovascular disease; childhood disease; insurance; length of stay; private health insurance
BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after .75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. METHOD(S): We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. RESULT(S): The analysis included 180 patients (median age at diagnosis,1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. CONCLUSION(S): In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care. Copyright © 2019 by the American Academy of Pediatrics.
Rossfeld Z M; Miller R; Fosselman D D; Ketner A R; Tumin D; Tobias J D; Humphrey L
Hospital Pediatrics
2019
<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>
Parents' needs for physician-parent communication in the face of life-threatening illness: Qualitative analysis
childhood disease; interpersonal communication; life threatening illness; parent; personal needs; physical disease; physician; adolescent; article; child; child death; child hospitalization; clinical article; female; health care system; hospice; human; infant; knowledge; law suit; male; malpractice; personal experience; preschool child; qualitative analysis; school child; semi structured interview
Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why physicians should be familiar with conditions that may help or disturb parents to manage this extreme situation. Competent communication leads to more effective treatment as well as fewer medical malpractice claims and lawsuits filed against doctors. Material and methods. The aim of this paper is the description and analysis of the needs of 23 parents whose children were diagnosed with life-threatening illnesses that led to death. The deceased children were treated mainly in hospitals or in hospices. The study was conducted in the period of one up to four years following the death of a child. A semi-structured interview was constructed and used for the purpose of this research. The transcription was analysed according to the rules of Qualitative Content Analysis with applying NVivo 9 software. Results. The results have revealed five categories of parents' needs addressed to physicians: 1) a greater intensity of direct parent-physician contact; 2) experience of doctors' thorough knowledge about the child and their illness; 3) a greater doctors' involvement in the search for the causes of the disease and further treatment; 4) parents' established position in the healthcare system, especially when the treatment lasted for a long time 5) more clear information about the applied treatment and condition of the child. Conclusions. The research indicates that the challenge of communication with parents is not only clear information about the course of a disease, providing facts about functioning of the entire health care system and this is particularly important for the parents whose child has been undergoing a long-term treatment. A physician should emphasise the meaning of palliative care as an integrated system of support. Parents' decision-making about medical treatment on the early stage of an illness may cause too heavy strain to some of them.
Janusz B; Walkiewicz M
Palliative Medicine in Practice
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/https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289" target="_blank" rel="noreferrer noopener">https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/56160/43289</a>
Pain In Children
Child Health Care; Pain/pc [prevention]; Canada; Childhood Disease; Clinical Research; Dermatome; Diagnostic Accuracy; Diagnostic Value; Doctor Patient Relation; Editorial; Education Program; Epidural Catheter; Human; Medical Literature; Nerve Block; Pain Assessment; Palliative Therapy; Patient Safety; Pediatric Anesthesia; Self Report
Finley G A
Pain Research And Management
2006
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).