scholarly journals About the Conditions, Issues and Problems of Children Palliative Care Using the Example of the Children’s Hospice Activity in Saint Petersburg

Author(s):  
Anatoly S. Simakhodsky ◽  
Alexander E. Tkachenko ◽  
Irina V. Kushnareva ◽  
Lyudmila D. Sevostya’nova

The topicality of reforming the children palliative care (CPC) system due to the increase of the number of patients with cancer, congenital disorders, neurological damages, injuries consequences, genetically determined pathologies is discussed. The patterns of CPC service development, the importance to track those in need, to determine the required volume, forms, and methods of palliative care, and to develop human capacity were analyzed. The results of “Children's Hospice” (Saint Petersburg) activities in 2014–2019 years are presented alongside with the data on CPC development in Russia. This example shows the advantages of clear routing, establishment of indications for patients’ hospitalization, and availability of high-technology medical care and medications. All innovations have led to the significant change in medical conditions structure (over 80% of patients are children with neurological pathology), to the decrease in the number of hospitalizations, to the increase in the number of children who can get required respiratory support at home. The issues of high employees’ turnover and low staffing level in CPC institutions are discussed.

2019 ◽  
Vol 34 (3) ◽  
pp. 387-402 ◽  
Author(s):  
Sarah Mitchell ◽  
Karina Bennett ◽  
Andrew Morris ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
...  

Background: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. Aim: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. Design: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). Data sources: An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. Results: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child’s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ‘expert’ child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. Conclusion: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.


2020 ◽  
Vol 8 (1) ◽  
pp. 65
Author(s):  
Izzatul Fithriyah ◽  
Agustina Konginan ◽  
Margarita Maramis ◽  
Marlina Mahajudin ◽  
Nalini Muhdi ◽  
...  

Background: Children with cancer require special interventions and palliative care to improve their quality of life. The epidemiology of pediatric cancer is needed as a basis for determining health policy. Purpose: This study describes pediatric cancer patients in the palliative outpatient clinic in Dr. Soetomo General Hospital, Surabaya. Methods: This study is an observational descriptive study that uses the medical records of pediatric patients with cancer at the palliative care unit in Dr. Soetomo General Hospital between June 2014 and July 2015. The data included the demographic characteristics of the pediatric cancer patients and was analyzed using descriptive statistics. Results: The number of children in the 1–5 years, 6–10 years, and 11–15 years age groups was similar, while noticeably fewer children fell into the 16–18 years group. The majority of children suffering from cancer were male (68,70%). The most common type of cancer in was blood cancer (leukemia) with a percentage of 51.91%, while the rarest types were retinoblastoma and lymph node cancer (malignant lymphoma) with percentage of 3.05%. Conclusion: The incidence of pediatric cancer patients in the palliative outpatient clinic was quite high. These patients tended to be male, aged 6–10 years, and suffered from leukemia.


Author(s):  
Shmakova O.P.

Prevention of disability is one of the most significant tasks of child and adolescent psychiatry. Obtaining data on the dynamics of the number of people with disabilities and the factors affecting this indicator seems to be one of the relevant aspects. Aim: to trace the dynamics of the number of children with disabili-ties and to assess the change in the structure of early disability over the past decades. Materials and Meth-ods. A comparative analysis of two cohorts of patients was carried out: 1st - patients born in 1990-1992. (1203 patients (men - 914, 76%; women - 289, 24%)) who applied to the district neuropsychiatric dispensa-ry for outpatient care in childhood and adolescence; II - children and adolescents born in 2005 - 2018 (602 patients (male - 410, 68%; female - 192, 32%), ob-served at the time of the study by a child psychiatrist in the neuropsychiatric dispensary. Research methods: clinical and psychopathological; follow-up; statisti-cal. Results. Comparison of the number and nosologi-cal distribution of disabled children in two cohorts showed that over the 15th year there has been a shift towards an increase in the proportion of disabled children among patients observed by child and ado-lescent psychiatrists. The increase in the number of children with disabilities was due to those suffering from childhood autism and other disorders of general development. There were no statistically significant differences in the number of people with disabilities who received benefits before the age of 7, as well as differences in gender ratios among disabled people in the two cohorts. Conclusion. Early disability is a mul-tifactorial phenomenon, prevalence, dynamics, the structure of which depends not only on clinical, but also on socio-administrative realities. Children with autism require increased attention, since there has been a multiple increase in the number of patients with this diagnosis.


2012 ◽  
Vol 127 (1) ◽  
pp. 15-19 ◽  
Author(s):  
A Mirza ◽  
L McClelland ◽  
M Daniel ◽  
N Jones

AbstractBackground:Many ENT conditions can be treated in the emergency clinic on an ambulatory basis. Our clinic traditionally had been run by foundation year two and specialty trainee doctors (period one). However, with perceived increasing inexperience, a dedicated registrar was assigned to support the clinic (period two). This study compared admission and discharge rates for periods one and two to assess if greater registrar input affected discharge rate; an increase in discharge rate was used as a surrogate marker of efficiency.Method:Data was collected prospectively for patients seen in the ENT emergency clinic between 1 August 2009 and 31 July 2011. Time period one included data from patients seen between 1 August 2009 and 31 July 2010, and time period two included data collected between 1 August 2010 and 31 July 2011.Results:The introduction of greater registrar support increased the number of patients that were discharged, and led to a reduction in the number of children requiring the operating theatre.Conclusion:The findings, which were determined using clinic outcomes as markers of the quality of care, highlighted the benefits of increasing senior input within the ENT emergency clinic.


Author(s):  
Nanako Koyama ◽  
Chikako Matsumura ◽  
Yuuna Tahara ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
...  

Abstract Purpose The aims of the present study were to investigate the symptom clusters in terminally ill patients with cancer using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL), and to examine whether these symptom clusters influenced prognosis. Methods We analyzed data from 130 cancer patients hospitalized in the palliative care unit from June 2018 to December 2019 in an observational study. Principal component analysis was used to detect symptom clusters using the scored date of 14 items in the QLQ-C15-PAL, except for overall QOL, at the time of hospitalization. The influence of the existence of these symptom clusters and Palliative Performance Scale (PPS) on survival was analyzed by Cox proportional hazards regression analysis, and survival curves were compared between the groups with or without existing corresponding symptom clusters using the log-rank test. Results The following symptom clusters were identified: cluster 1 (pain, insomnia, emotional functioning), cluster 2 (dyspnea, appetite loss, fatigue, and nausea), and cluster 3 (physical functioning). Cronbach’s alpha values for the symptom clusters ranged from 0.72 to 0.82. An increased risk of death was significantly associated with the existence of cluster 2 and poor PPS (log-rank test, p = 0.016 and p < 0.001, respectively). Conclusion In terminally ill patients with cancer, three symptom clusters were detected based on QLQ-C15-PAL scores. Poor PPS and the presence of symptom cluster that includes dyspnea, appetite loss, fatigue, and nausea indicated poor prognosis.


BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ruofei Du ◽  
Xin Wang ◽  
Lixia Ma ◽  
Leon M. Larcher ◽  
Han Tang ◽  
...  

Abstract Background The adverse reactions (ADRs) of targeted therapy were closely associated with treatment response, clinical outcome, quality of life (QoL) of patients with cancer. However, few studies presented the correlation between ADRs of targeted therapy and treatment effects among cancer patients. This study was to explore the characteristics of ADRs with targeted therapy and the prognosis of cancer patients based on the clinical data. Methods A retrospective secondary data analysis was conducted within an ADR data set including 2703 patients with targeted therapy from three Henan medical centers of China between January 2018 and December 2019. The significance was evaluated with chi-square test between groups with or without ADRs. Univariate and multivariate logistic regression with backward stepwise method were applied to assess the difference of pathological characteristics in patients with cancer. Using the univariate Cox regression method, the actuarial probability of overall survival was performed to compare the clinical outcomes between these two groups. Results A total of 485 patients were enrolled in this study. Of all patients, 61.0% (n = 296) occurred ADRs including skin damage, fatigue, mucosal damage, hypertension and gastrointestinal discomfort as the top 5 complications during the target therapy. And 62.1% of ADRs were mild to moderate, more than half of the ADRs occurred within one month, 68.6% ADRs lasted more than one month. Older patients (P = 0.022) and patients with lower education level (P = 0.036), more than 2 comorbidities (P = 0.021), longer medication time (P = 0.022), drug combination (P = 0.033) and intravenous administration (P = 0.019) were more likely to have ADRs. Those with ADRs were more likely to stop taking (P = 0.000), change (P = 0.000), adjust (P = 0.000), or not take the medicine on time (P = 0.000). The number of patients with recurrence (P = 0.000) and metastasis (P = 0.006) were statistically significant difference between ADRs and non-ADRs group. And the patients were significantly poor prognosis in ADRs groups compared with non-ADRs group. Conclusion The high incidence of ADRs would affect the treatment and prognosis of patients with cancer. We should pay more attention to these ADRs and develop effective management strategies.


2021 ◽  
pp. bmjspcare-2020-002638
Author(s):  
Juan Yang ◽  
Dietlind L Wahner-Roedler ◽  
Xuan Zhou ◽  
Lesley A Johnson ◽  
Alex Do ◽  
...  

BackgroundPain is one of the most common and problematic symptoms encountered by patients with cancer. Due to the multifactorial aetiology, pain management of these patients frequently requires multidisciplinary interventions including conventional support and specialty palliative care. Acupuncture has been identified as a possible adjunctive therapy for symptom management in cancer pain, and there is currently no systematic review focused solely on the evidence of acupuncture on cancer pain in palliative care.ObjectiveTo critically analyse currently available publications regarding the use of acupuncture for pain management among patients with cancer in palliative care settings.MethodsMultiple academic databases were searched from inception to 29 October 2020. Randomised controlled trials involving acupuncture in palliative care for treatment of cancer-related pain were synthesised. Data were extracted by two independent reviewers, and methodological quality of each included study was assessed using the Oxford Centre for Evidence-Based Medicine (OCEBM) 2011 Levels of Evidence.ResultsFive studies (n=189) were included in this systematic review. Results indicated a favourable effect of acupuncture on pain relief in palliative care for patients with cancer. According to OCEBM 2011 Levels of Evidence, they were level 2 in one case (20%), level 3 in two cases (40%) and level 4 in the remaining (40%). Low-level evidence adversely affects the reliability of findings.ConclusionsAcupuncture may be an effective and safe treatment associated with pain reduction in the palliative care of patients with cancer. Further high-quality, adequately powered studies are needed in the future.


2019 ◽  
Vol 15 (10) ◽  
pp. 531-538 ◽  
Author(s):  
Vinita Singh ◽  
Ali J. Zarrabi ◽  
Kimberly A. Curseen ◽  
Roman Sniecinski ◽  
Justine W. Welsh ◽  
...  

PURPOSE: Several states, particularly in the Southeast, have restrictive medical marijuana laws that permit qualified patients to use specific cannabis products. The majority of these states, however, do not provide avenues for accessing cannabis products such as in-state dispensaries. METHODS: We conducted a survey of patients registered for medical marijuana (low tetrahydrocannabinol [THC] oil cards) in an ambulatory palliative care practice in Georgia (one of the states with restrictive medical marijuana laws). RESULTS: We had a total of 101 responses. Among our sample of patients who use cannabis as part of a state-approved low THC oil program, 56% were male and 64% were older than age 50 years. Advanced cancer was the most common reason (76%) for granting the patients access to a low THC oil card. Although patients reported cannabis products as being extremely helpful for reducing pain, they expressed considerable concerns about the legality issues (64%) and ability to obtain THC (68%). Several respondents were using unapproved formulations of cannabis products. For 48% of the patients, their physician was the source of information regarding marijuana-related products. Furthermore, they believed that their health care providers and family members were supportive of their use of cannabis (62% and 79%, respectively). CONCLUSION: Patients on Georgia’s medical marijuana program are most concerned about the legality of the product and their ability to obtain marijuana-related products. Therefore, we recommend that states with medical marijuana laws should provide safe and reliable access to cannabis products for qualifying patients.


1996 ◽  
Vol 3 (3) ◽  
pp. 204-213 ◽  
Author(s):  
Carla Ripamonti ◽  
Eduardo Bruera

Background Pain, dyspnea, and anorexia are common symptoms experienced by patients with cancer and often are poorly managed. Methods The incidence and causes of these symptoms are described, as well as factors that exacerbate or ameliorate their impact. Results Pharmacologic management of cancer pain is based on the use of a sequential “ladder” that incorporates nonopioid, opioid, and adjuvant drugs, depending on the severity of the pain. This approach usually is effective. Other symptoms of advanced disease may be more difficult to control. Conclusions Adherence to an adequate pain-control strategy will significantly enhance palliation of pain in patients with cancer.


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