Making the Unvisible More Visible? A Retrospective Study Identifying Children and Adolescents with Complex Chronic Conditions Hospitalized in Brussels from 2010 to 2014 and their Access to Specialized Palliative Care Teams

2019 ◽  
Author(s):  
Marie Friedel
Keyword(s):  
Palliative Care ◽  
Retrospective Study ◽  
Children And Adolescents ◽  
Chronic Conditions ◽  
Complex Chronic Conditions ◽  
Palliative Care Teams ◽  
Specialized Palliative Care

scholarly journals Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium

2019 ◽  
Vol 3 (1) ◽  
pp. e000547 ◽  
Author(s):  
Marie Friedel ◽  
Aurélie Gilson ◽  
Dominique Bouckenaere ◽  
Bénédicte Brichard ◽  
Christine Fonteyne ◽  
...  
Keyword(s):  
Palliative Care ◽  
Children And Adolescents ◽  
Chronic Conditions ◽  
Third Party ◽  
Aggregated Data ◽  
Number Of Children ◽  
International Classification Of Disease ◽  
Complex Chronic Conditions ◽  
Paediatric Palliative Care ◽  
Registration Number

BackgroundPaediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown.ObjectivesThe aim of the study was to identify, over a 5-year period (2010–2014), the number of children and adolescents (0–19 years) living with a CCC, and also their referral to PLTs.MethodsInternational Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics.ResultsOver 5 years (2010–2014) in the Brussels region, a total of 22 721 children/adolescents aged 0–19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT.ConclusionIn Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.

scholarly journals Palliative care and complex chronic conditions since the perspective of healthcare professionals

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
A Doñate-Martínez ◽  
L Llop ◽  
J Garcés
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Early Identification ◽  
Chronic Conditions ◽  
Healthcare Professionals ◽  
Care Pathway ◽  
Holistic View ◽  
Complex Chronic Conditions ◽  
Symptom Intensity

Abstract Background According to the WHO, palliative care (PC) is applicable early in the course of illness together with other curative therapies. Early PC has demonstrated beneficial effects on quality of life and symptom intensity among cancer patients. However, PC is not as early integrated on the care pathway of complex chronic conditions (CCC). This abstract presents barriers and needs identified to effectively implement early PC on CCC performed under the EU-funded InAdvance project (ref.: 825750). Methods Semi-structured interviews were performed with 16 healthcare professionals (HPs) from primary care and hospital settings working with older patients with CCC in Valencia (Spain). Results Interviews reported that main needs identified to provide early PC are: (a) coordinated strategies between multi-setting HPs to an early identification of CCC patients in need of PC; (b) adequate resources to attend patients' PC needs from a holistic view, i.e. psychosocial and spiritual needs; and (c) early integration of basic PC at primary care teams. The main barriers identified were: (a) stereotypes associated to the traditional PC approach; (b) poor knowledge from HPs of the PC holistic approach; and (c) lack of specific protocols or pathways for CCC in need of PC. Conclusions Specific skills and resources are the most relevant needs to effectively provide early PC among patients with CCC. First, it is urgent to demystify the negative culture-related vision of PC that is commonly associated to sedation and last days of a person's life. Also, multidisciplinary HPs require specific training to identify and provide early PC tailored to CCC. And, it is required a strategic and multi-setting organizational approach with fluent information flow and coordinated roles. Key messages Healthcare expenditure would be considerably reduced, especially at hospital and emergency units, with an early identification of patients with CCC in need of PC. Empowering primary HPs in PC would improve the quality of care of patients with CCC.

Provision of specialized palliative care in a multiprofessional network.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 144-144
Author(s):  
Jens Hermann Papke
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Outpatient Setting ◽  
Multiprofessional Team ◽  
Nursing Services ◽  
Palliative Care Teams ◽  
Specialized Palliative Care ◽  
Dying At Home ◽  
Karnofsky Index ◽  
At Home

144 Background: In Germany specialised palliative care in outpatient setting is financed by health insurances since 2007. Home Care Sachsen e.V. is a specialised palliative care provider working with two palliative care teams including qualified nurses, physicians and social workers in closely cooperation with general practitioners and nursing services. We report about the results of our work in a rural area around Dresden in Saxony, Germany. Methods: Our data were collected prospectively with PalliDoc software. Results: Between 2011 – 2013 Home Care Sachsen e.V. served for 1,572 pts (888 m, 684 f); 93% with an oncologic disease. Median age was 71 y, Karnofsky index was 40%, median caring time 27 days. In this time, 25% of our pts had one stay in hospital, 8% two and 4% three and more. 63% had no stays in hospital. At least 1,271 pts. died: 65% at home; 9% in nursing homes and hospices; 15% in palliative care units and 11% in hospital. Conclusions: Mean home death rate of oncologic pts without intervention in Germany is about 44% (Papke J, Koch R: Places of Death from Cancer in a Rural Location. Onkologie (2007) 30, 105-08). This proportion could be enhanced considerably with outpatient palliative care. Providing of specialised palliative care with a multiprofessional team is effective to increase the rate of dying at home and to fulfill one of the strongest wishes of pts in a palliative situation.

scholarly journals Complex chronic conditions in children and adolescents: hospitalizations in Brazil, 2013

2017 ◽  
Vol 22 (8) ◽  
pp. 2727-2734 ◽  
Author(s):  
Erly Catarina de Moura ◽  
Martha Cristina Nunes Moreira ◽  
Lívia Almeida Menezes ◽  
Isadora Almeida Ferreira ◽  
Romeu Gomes
Keyword(s):  
Children And Adolescents ◽  
Chronic Conditions ◽  
International Classification Of Diseases ◽  
Public Hospitals ◽  
Public Health Issue ◽  
Complex Chronic Conditions ◽  
The North ◽  
Classification Of Diseases ◽  
Duration Of Hospitalization ◽  
South Of Brazil

Abstract This article aims to estimate the extent of hospitalizations for complex chronic conditions in Brazil. Data from the Hospital Information System for 2013 were compiled according to the International Classification of Diseases 10th Revision. Hospitalization rates were estimated according to region, sex, age and disease chapter, taking into account the 2012 population as a reference, as well the percentage of highly complex procedures and mortality rates. Public hospitals treated 190,000 inpatients in 2013. The rate was highest among the population in the South of Brazil, those who were male and children under the age of one. The rate was lowest among the population in the North, females and children aged between 10 and 14years. The mean duration of hospitalization was six days, the percentage of highly complex procedures was 13.5% and the mortality rate was 1.3%. The three most common causes for hospitalizations were diseases of the respiratory system, neoplasms and diseases of the nervous system. The incidence of complex chronic conditions is 331 inwards per 100,000 children and adolescents in Brazil, with an estimate of 240,000 children and adolescents hospitalized. This panorama points to the problem as an emergent public health issue in Brazil.

scholarly journals Medical Cannabis in Children and Adolescents in Switzerland: a Retrospective Study

2021 ◽  
Author(s):  
Kathrin Zürcher ◽  
Carole Dupont ◽  
Peter Weber ◽  
Sebastian Grunt ◽  
Ilca Wilhelm ◽  
...  
Keyword(s):  
Retrospective Study ◽  
Children And Adolescents ◽  
Chronic Conditions ◽  
Gastric Tube ◽  
Treatment Interruption ◽  
Medical Cannabis ◽  
Reported Data ◽  
Study Participants ◽  
Epidemiological Characteristics ◽  
To Receive

Abstract Background: Evidence on use and efficacy of medical cannabis for children is limited. We examined clinical and epidemiological characteristics of medical cannabis treatment and caregiver-reported effects in children and adolescents in Switzerland.Methods: We collected clinical data from children and adolescents (<18 years) who received Δ9-tetrahydrocannabinol (THC), cannabidiol (CBD), or a combination of the two between 2008 and 2019 in Switzerland. Results: Out of 205 contacted families, 90 agreed to participate. The median age at the first prescription was 11.5 years (interquartile range (IQR) 6-16), and 32 patients were female (36%). Fifty-one (57%) patients received CBD and 39 (43%) THC. Patients were more likely to receive THC therapy if one of the following symptoms or signs were present: spasticity, pain, lack of weight gain, vomiting, or nausea, whereas seizures were the dominant indication for CBD therapy. Improvements were reported in 59 (66%) study participants. The largest treatment effects were reported for pain, spasticity, and frequency of seizures in participants treated with THC, and for those treated with pure CBD, the frequency of seizures. However, 43% of caregivers reported treatment interruption, mainly because of lack of improvement (56%), side effects (46%), the need for a gastric tube (44%), and cost considerations (23%).Conclusions: The effects of medical cannabis in children and adolescents with chronic conditions are unknown, but the caregiver-reported data reported here may justify trials of medical cannabis with standardized concentrations of THC or CBD to assess its efficacy in the young.

scholarly journals Cachexia & debility diagnoses in hospitalized children and adolescents with complex chronic conditions: evidence from the Kids’ Inpatient Database

2015 ◽  
Vol 4 ◽  
pp. 1-14 ◽  
Author(s):  
Bryce Van Doren ◽  
Debosree Roy ◽  
Joshua Noone ◽  
Christopher Blanchette ◽  
Susan Arthur
Keyword(s):  
Children And Adolescents ◽  
Chronic Conditions ◽  
Hospitalized Children ◽  
Complex Chronic Conditions ◽  
Inpatient Database

Supporting Self-Management in Children and Adolescents With Complex Chronic Conditions

PEDIATRICS ◽  
2018 ◽  
Vol 141 (Supplement 3) ◽  
pp. S233-S241 ◽  
Author(s):  
Paula Lozano ◽  
Amy Houtrow
Keyword(s):  
Children And Adolescents ◽  
Chronic Conditions ◽  
Self Management ◽  
Complex Chronic Conditions

scholarly journals Nationwide evaluation of palliative care (Q-PAC study) provided by specialized palliative care teams using quality indicators : Large variations in quality of care

2021 ◽  
pp. 026921632110198
Author(s):  
Joachim Cohen ◽  
Kirsten Hermans ◽  
Charlèss Dupont ◽  
Lieve Van den Block ◽  
Luc Deliens ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Indicators ◽  
Quality Indicator ◽  
Care Delivery ◽  
Cross Sectional Study ◽  
Care Providers ◽  
Cross Sectional ◽  
Palliative Care Teams ◽  
Specialized Palliative Care

Background: Although a number of quality indicators for palliative care have been implemented worldwide, evidence regarding the performance of palliative care teams is scarce. Aim: Evaluating the quality of palliative care using quality indicators; to describe the variation in quality between palliative care teams; and to suggest quality benchmarks for these teams. Design: A repeated cross-sectional study design to collect quality indicator data by means of a validated quality indicator set in 36 Belgian palliative care teams at home and in hospitals. Risk-adjustment procedures, taking into account patient-mix, were applied to suggest benchmarks. Participants: Between 2014 and 2017, five quality measurements with questionnaires were conducted in 982 patients receiving palliative care, 4701 care providers and 1039 family members of deceased patients. Results: A total of 7622 assessments were received. Large risk-adjusted variations between the different palliative care teams were identified in: regularly updating patient files (IQR: 12%–39%), having multidisciplinary consultations about care objectives (IQR: 51%–73%), discussing end-of-life care decisions with patients (IQR: 26%–71%–92%), relieving shortness of breath (IQR: 57%–78%), regularly assessing pain (IQR: 43%–74%) and symptoms by means of validated scales (IQR: 23%–60%), initiating palliative care at least 2 weeks before death (IQR: 30%–50%), and weekly contact with the GP in the last 3 months of life (IQR 16%–43%). Conclusion: The large risk-adjusted variation found across the quality indicator scores suggest that repeated and standardized quality improvement evaluations can allow teams to benchmark themselves to each other to identify areas of their palliative care delivery that need improvement.

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