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1.
BMC Palliat Care ; 21(1): 185, 2022 Oct 17.
Artigo em Inglês | MEDLINE | ID: mdl-36244981

RESUMO

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos , Pediatria , Criança , Europa (Continente) , Pesquisas sobre Atenção à Saúde , Serviços de Assistência Domiciliar/estatística & dados numéricos , Humanos , Cuidados Paliativos/estatística & dados numéricos , Pediatria/estatística & dados numéricos
2.
J Paediatr Child Health ; 58(8): 1352-1358, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35426461

RESUMO

AIM: Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, single-room isolation is usually recommended. In the context of paediatric palliative care (PPC), such isolation counters the aim of participation in social activities for the patients. This study aimed to determine the prevalence of MDRO, the predictive value of risk factors and the incidence of nosocomial infections and nosocomial colonisations on a PPC inpatient unit applying a special hygiene concept that enables participation in social activities through risk-adaption and barrier nursing. METHODS: Two-year surveillance with MDRO screening of all intakes (N = 386) of a PPC unit on the day of admission and discharge. To determine the predictive value of pre-defined risk factors, logistic regression analyses were calculated. Receiver operating characteristic analyses were performed to determine the predictive power of the number of risk factors on the presence of MDRO. RESULTS: The rate of MDRO colonisation at admission was 12.7%; previous positive MDRO screening was the only significant individual risk factor. Over the 2-year period, no MDRO-related nosocomial infections occurred; nosocomial colonisation incidence density was 0.6. CONCLUSION: Results demonstrate that patients with at least one risk factor have to be cared for by barrier nursing until MDRO screening results are negative. Following these guidelines prevents nosocomial MDRO transmission.


Assuntos
Infecção Hospitalar , Farmacorresistência Bacteriana Múltipla , Criança , Infecção Hospitalar/diagnóstico , Infecção Hospitalar/epidemiologia , Infecção Hospitalar/prevenção & controle , Humanos , Higiene , Cuidados Paliativos , Prevalência , Fatores de Risco
3.
J Pain Symptom Manage ; 64(2): 156-167, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35430284

RESUMO

CONTEXT: In pediatric palliative care, irritability of unknown origin (IUO) in children with severe neurological impairment is a peculiarly complex and challenging symptom, yet its etiology remains poorly understood. OBJECTIVES: Presenting a structured IUO diagnostic and therapeutic approach developed in a specialized inpatient pediatric palliative care facility for identifying IUO's potential contributing factors (PCFs). METHODS: Prospective observational study with N = 22 children showing IUO at admission to the inpatient pediatric palliative care facility. Analysis of patient records and participation in ward routine to identify and treat PCFs. Treatment outcome was assessed using a standardized protocol for tracking IUO at 24-hour intervals. RESULTS: Altogether, 136 PCFs were identified (average 6.18 per child) with pain and psycho-social problems being the most common. Two hundred and twenty-two diagnostic measures were initiated of which 159 (71.6%) helped identify a PCF. The majority of PCFs were identified by basic diagnostics (93.7%). Inpatient length of stay and duration of IUO phases correlated significantly. Between baseline (days 3-5; timing at which inpatients experientially show regular behavior) and discharge, patients showed a significant reduction in average 24-hours IUO duration by 1 hour and 26 minutes (Wilcoxon test: Z = -3.29, P < 0.01). CONCLUSION: Results lead to a more thorough understanding of PCFs to IUO. Following a systematic approach such as the one presented, PCFs can be detected even by simple diagnostics. In addition to biological aspects, diagnostics and therapy should address psycho-social aspects of IUO.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Criança , Hospitalização , Humanos , Pacientes Internados , Estudos Prospectivos
4.
Artigo em Inglês | MEDLINE | ID: mdl-35329323

RESUMO

BACKGROUND: Paediatric palliative care (PPC) is a noncurative approach to the care of children and adolescents with life-limiting and life-threatening illnesses. Electronic medical records (EMRs) play an important role in documenting such complex processes. Despite their benefits, they can introduce unintended consequences if future users are not involved in their development. AIM: The aim of this study was to evaluate the acceptance of a novel module for nursing documentation by nurses working in the context of PPC. METHODS: An observational study employing concurrent think-aloud and semi-structured qualitative interviews were conducted with 11 nurses working in PPC. Based on the main determinants of the unified theory of acceptance and use of technology (UTAUT), data were analysed using qualitative content analysis. RESULTS: The main determinants of UTAUT were found to potentially influence acceptance of the novel module. Participants perceived the module to be self-explanatory and intuitive. Some adaptations, such as the reduction of fragmentation in the display, the optimization of confusing mouseover fields, and the use of familiar nursing terminology, are reasonable ways of increasing software adoption. CONCLUSIONS: After adaptation of the modules based on the results, further evaluation with the participation of future users is required.


Assuntos
Registros Eletrônicos de Saúde , Cuidados Paliativos , Adolescente , Criança , Documentação , Humanos , Software , Tecnologia
5.
Artigo em Inglês | MEDLINE | ID: mdl-35010713

RESUMO

Pediatric palliative care (PPC) patients require years of care across professions and sectors. Sharing treatment-related information and communicating among different PPC professionals is critical to ensure good quality of care. In Germany, this communication is mostly paper-based and prone to errors. Therefore, an electronic cross-facility health record (ECHR) was participatorily designed with users, wherein information can be shared and PPC professionals can communicate with each other. As this form of electronic health record differs from existing models in Germany, there is a need for successful implementation to ensure a positive impact. Therefore, the facilitators and barriers to the implementation of ECHR in PPC were examined. Using the consolidated framework for implementation research (CFIR), transcripts of 32 interviews, 3 focus groups, and 20 think-aloud studies with PPC professionals were analyzed. CFIR indicated that the ECHR-design was viewed positively by users and can be a facilitator for implementation. Barriers exist, mainly due to the fact that the implementation is not planned, the use of the ECHR involves effort, costs are not covered, and all users must be motivated to use the ECHR for functionality. CFIR helps uncover the crux of the issues that need to be considered when planning ECHR implementation to improve care in PPC.


Assuntos
Registros Eletrônicos de Saúde , Cuidados Paliativos , Criança , Comunicação , Eletrônica , Humanos , Pesquisa Qualitativa
6.
J Palliat Med ; 24(11): 1725-1731, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34726519

RESUMO

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.


Assuntos
Planejamento Antecipado de Cuidados , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Criança , Comunicação , Humanos , Lactente , Cuidados Paliativos , Pais , Adulto Jovem
7.
Int J Palliat Nurs ; 27(1): 10-19, 2021 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-33629914

RESUMO

BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. AIM: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. METHODS: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. FINDINGS: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. CONCLUSION: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.


Assuntos
Resistência a Múltiplos Medicamentos , Controle de Infecções/organização & administração , Qualidade de Vida , Participação Social , Doente Terminal , Criança , Pré-Escolar , Infecção Hospitalar/prevenção & controle , Estudos Transversais , Feminino , Unidades Hospitalares , Humanos , Lactente , Capacitação em Serviço , Entrevistas como Assunto , Masculino , Avaliação em Enfermagem , Cuidados Paliativos , Pais , Isolamento de Pacientes , Segurança do Paciente , Estereotipagem , Inquéritos e Questionários
8.
J Palliat Med ; 24(1): 122-132, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33085565

RESUMO

Background: Multidrug-resistant organisms (MDROs) are an important health care issue. Patients in Western societies often present an increased morbidity of chronic conditions accompanied by poor immune status and the use of devices. In particular, patients in palliative care (PC) are at greater risk of MDRO colonization, due to accompanying special devices and being hospitalized. Objective: To gain an overview of the literature regarding MDROs in PC. Design: Systematic review Data sources: On the 19th of October 2019 the databases " PubMed" and " CINAHL" were used to identify studies reporting on MDROs in PC; the search was updated on 16th of May 2020. Results: Seventeen out of 486 articles were included. Six represent qualitative data, 10 quantitative data, and one a mixed methods approach. Prevalence data range from 4.0% to 18%. MDRO colonization has a negative impact on patients and families. It leads to uncertainties and higher workload by staff members. Strategies for the management of MDROs in the field of PC are predominantly available for methicillin-resistant Staphylococcus aureus. Not even half of institutions utilize existing protocols. Recommendations for dealing with MDROs indicate required staff and time resources as well as information, communication, and specific knowledge. Conclusion: There is a great need for studies examining the prevalence of all MDROs in the PC setting. Additionally, not only patients but also a public enlightenment on MDROs should be provided to decrease knowledge gaps and therefore reduce transmission on MDROs.


Assuntos
Staphylococcus aureus Resistente à Meticilina , Antibacterianos/uso terapêutico , Farmacorresistência Bacteriana Múltipla , Humanos , Cuidados Paliativos
9.
Palliat Med ; 35(3): 611-620, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33339481

RESUMO

BACKGROUND: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. AIM: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. DESIGN: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. SETTING: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. RESULTS: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. CONCLUSION: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.


Assuntos
Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos , Criança , Alemanha , Humanos , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
10.
Children (Basel) ; 7(12)2020 Dec 21.
Artigo em Inglês | MEDLINE | ID: mdl-33371493

RESUMO

Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely used in PPC. Nonetheless, there is considerable uncertainty regarding the opioid-related side effects in pediatric patients with SNI, particularly concerning Opioid-Induced Respiratory Depression (OIRD). Research on pain and OIRD in pediatric patients with SNI is limited. Using scoping review methodology, we performed a systematic literature search for OIRD in pediatric patients with SNI. Out of n = 521 identified articles, n = 6 studies were included in the review. Most studies examined the effects of short-term intravenous opioid therapy. The incidence of OIRD varied between 0.13% and 4.6%; besides SNI, comorbidities, and polypharmacy were the most relevant risk factors. Additionally, three clinical cases of OIRD in PPC patients receiving oral or transdermal opioids are presented and discussed. The case reports indicate that the risk factors identified in the scoping review also apply to adolescents and young adults with SNI receiving low-dose oral or transdermal opioid therapy. However, the risk of OIRD should never be a barrier to adequate symptom relief. We recommend careful consideration and systematic observation of opioid therapy in this population of patients.

11.
Palliat Med ; 34(3): 309-318, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31680627

RESUMO

BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. AIM: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. DESIGN: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. SETTING: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. RESULTS: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. CONCLUSION: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.


Assuntos
Pessoal de Saúde/psicologia , Doenças do Sistema Nervoso/terapia , Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos , Pais/psicologia , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa
12.
Pain ; 160(8): 1698-1707, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31335640

RESUMO

We know little about the safety or efficacy of pharmacological medicines for children and adolescents with chronic pain, despite their common use. Our aim was to conduct an overview review of systematic reviews of pharmacological interventions that purport to reduce pain in children with chronic noncancer pain (CNCP) or chronic cancer-related pain (CCRP). We searched the Cochrane Database of Systematic Reviews, Medline, EMBASE, and DARE for systematic reviews from inception to March 2018. We conducted reference and citation searches of included reviews. We included children (0-18 years of age) with CNCP or CCRP. We extracted the review characteristics and primary outcomes of ≥30% participant-reported pain relief and patient global impression of change. We sifted 704 abstracts and included 23 systematic reviews investigating children with CNCP or CCRP. Seven of those 23 reviews included 6 trials that involved children with CNCP. There were no randomised controlled trials in reviews relating to reducing pain in CCRP. We were unable to combine data in a meta-analysis. Overall, the quality of evidence was very low, and we have very little confidence in the effect estimates. The state of evidence of randomized controlled trials in this field is poor; we have no evidence from randomised controlled trials for pharmacological interventions in children with cancer-related pain, yet cannot deny individual children access to potential pain relief. Prospero ID: CRD42018086900.


Assuntos
Analgésicos/uso terapêutico , Dor Crônica/tratamento farmacológico , Manejo da Dor , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido
13.
Support Care Cancer ; 27(1): 33-42, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30056529

RESUMO

CONTEXT: Opioids administered by various routes are a mainstay of tumour-related pain management. Subcutaneous or intravenous patient-controlled analgesia (PCA) with opioids is an appropriate and safe form of treatment for postoperative pain but studies on this form of administration are sparse in the setting of cancer pain despite widespread use. OBJECTIVE: To evaluate the published studies on opioids administered by subcutaneous and intravenous patient-controlled analgesia for patients with cancer pain. METHODS: Articles were identified from the Cochrane Central Register of Controlled Trials (The Cochrane Library Issue 7, 2016), PubMed (Medline; 1975 to 2016) and EMBASE (1974 to 2016). Additional reports were identified from the reference lists of retrieved papers. Studies based on original data with a focus on intravenous or subcutaneous PCA administration of opioids in patients suffering from cancer-related pain were selected. The language was restricted to Dutch, English or German. Predefined information was extracted depending on the topic. RESULTS: Fifty studies published since 1980 met the inclusion criteria. A wide range of study designs, study quality and research objectives were observed. The studies indicated use of standard or by proxy PCA in the inpatient and outpatient setting were safe and useful while significant adverse effects were rarely observed. CONCLUSION: This systematic review of the current evidence suggests PCA can be appropriately used in a wide range of clinical situations.


Assuntos
Analgesia Controlada pelo Paciente/métodos , Analgésicos Opioides/administração & dosagem , Dor do Câncer/tratamento farmacológico , Administração Intravenosa , Analgesia Controlada pelo Paciente/efeitos adversos , Analgésicos Opioides/efeitos adversos , Humanos , Injeções Subcutâneas , Neoplasias/tratamento farmacológico , Neoplasias/cirurgia , Manejo da Dor/efeitos adversos , Manejo da Dor/métodos , Dor Pós-Operatória/tratamento farmacológico
15.
BMC Palliat Care ; 17(1): 106, 2018 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-30200942

RESUMO

BACKGROUND: Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The purpose of this study was to describe the circumstances of the use of intranasal fentanyl in an acute attack of respiratory distress (AARD) in children receiving palliative care, as well as to describe outcomes and adverse events after its use. METHODS: Children and adolescents treated in a pediatric palliative unit or attended by a specialized home care team between 2010 and 2016 were included in this study. A retrospective chart review was conducted of those who were treated with intranasal fentanyl for an AARD. RESULTS: During the study period 16 children (0.5-18.6 years) with various life-limiting conditions were treated with intranasal fentanyl for AARD. In total, 70 AARDs were analyzed. In 74% of all AARDs, a single dose of intranasal fentanyl was used. Frequent causes for an AARD were excessive secretions and acute respiratory infection. The median starting dose of intranasal fentanyl was 1.5 µg/kg body weight. Labored breathing (96%), tachypnea (79%) and related suffering (97%) improved after treatment. An adverse event occurred in one child. CONCLUSIONS: Intranasal fentanyl may be a safe and effective medication for the treatment of acute attacks of respiratory distress in children with life-limiting conditions. However, prospective studies with larger sample sizes and a control group are needed to validate these findings.


Assuntos
Fentanila , Cuidados Paliativos/métodos , Insuficiência Respiratória , Administração Intranasal/métodos , Adolescente , Analgésicos Opioides/administração & dosagem , Analgésicos Opioides/efeitos adversos , Criança , Pré-Escolar , Relação Dose-Resposta a Droga , Feminino , Fentanila/administração & dosagem , Fentanila/efeitos adversos , Humanos , Lactente , Masculino , Insuficiência Respiratória/diagnóstico , Insuficiência Respiratória/terapia , Estudos Retrospectivos , Avaliação de Sintomas/métodos , Resultado do Tratamento
16.
Children (Basel) ; 5(6)2018 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-29857504

RESUMO

In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%). The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients (p < 0.01). Cancer patients received antiemetics significantly more often (permanent and on demand) than non-cancer patients (p < 0.01). Significantly more non-cancer patients had some type of feeding tube (57.3%) or received oxygen (33.3%) (p < 0.01). Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients (p < 0.001). Tracheostomy tubes (9.3%) or ventilation (14.7%) were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients.

17.
J Palliat Med ; 21(2): 169-176, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29297749

RESUMO

BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed. OBJECTIVE: This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups. DESIGN/SETTING/SUBJECTS: A cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs. RESULTS: The comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care. CONCLUSION: A substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.


Assuntos
Doença Crônica/mortalidade , Doença Crônica/enfermagem , Hospitais Pediátricos/organização & administração , Hospitais Pediátricos/estatística & dados numéricos , Hospitais Universitários/organização & administração , Cuidados Paliativos/organização & administração , Assistência Terminal/organização & administração , Centros de Atenção Terciária/organização & administração , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Feminino , Alemanha , Hospitais Universitários/estatística & dados numéricos , Humanos , Lactente , Recém-Nascido , Masculino , Cuidados Paliativos/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Centros de Atenção Terciária/estatística & dados numéricos
18.
J Palliat Med ; 21(4): 552-564, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29313744

RESUMO

BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children. OBJECTIVE: The purpose of this systematic review was to investigate the prevalence and causes of dyspnea in children with CCC and to identify the current state of research on the measurements, treatments, and the evaluation of therapeutic interventions. METHODS: A systematic literature search for relevant literature from 1990 until the present was performed using the online database PubMed. Information about prevalence, pathophysiological mechanisms, measurement, and treatment of dyspnea was extracted from all 43 eligible publications. RESULTS: The prevalence ranged widely from 17% to 80%. Breathlessness was primarily attributed to a disease-specific pathophysiology. A multidimensional approach has not been reported. Assessment of dyspnea included eight tools using either subjective self- or proxy-ratings or objective measures. Evidence for the effectiveness of various treatment approaches was low. DISCUSSION: The prevalence rates for dyspnea could be generalized across all conditions and patient subgroups. The biopsychosocial-spiritual approach was not addressed by the studies. There is a lack of an adequate and validated measurement tool that can be applied to children of various ages and diagnoses, communication ability, and practicable across different settings. Most found treatment approaches lacked good evidence in children. CONCLUSION: Although the prevalence rate of dyspnea in pediatric palliative care is high, it has been poorly studied.


Assuntos
Doença Crônica , Dispneia/fisiopatologia , Dispneia/terapia , Cuidados Paliativos , Assistência Terminal , Criança , Humanos
19.
Am J Hosp Palliat Care ; 35(7): 951-958, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29316802

RESUMO

BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: This study aims to explore and compare the perspectives of volunteers and staff regarding collaboration in a pediatric palliative care unit. DESIGN: A mixed-methods approach was chosen to appropriately reflect the complex aspects of collaboration. SETTING/PARTICIPANTS: Both face-to-face interviews with staff who work together with volunteers and a group discussion with all volunteers were conducted. These were supplemented by 2 questionnaires designed for this study that examined participants' characteristics and their estimation of what information volunteers need before they meet a patient. RESULTS: Nine staff members and 7 volunteers participated in this study. Their ideas of collaboration could be grouped into 3 categories: (i) factual level of collaboration, (ii) relationship level of collaboration, and (iii) overall appraisal of collaboration (suggestions for improvement). CONCLUSION: Communication can be considered a key factor in successful collaboration between volunteers and staff. Because many patients in pediatric palliative care units are not able to communicate verbally, good information flow between volunteers and staff is crucial for ensuring quality patient care. Moreover, communication is the key to establishing a team philosophy by clarifying roles and building relationships between volunteers and staff.


Assuntos
Comportamento Cooperativo , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Voluntários/psicologia , Adulto , Criança , Comunicação , Feminino , Hospitais Pediátricos/normas , Humanos , Masculino , Papel Profissional
20.
Cochrane Database Syst Rev ; 7: CD012564, 2017 07 19.
Artigo em Inglês | MEDLINE | ID: mdl-28722116

RESUMO

BACKGROUND: Pain is a common feature of childhood and adolescence around the world, and for many young people, that pain is chronic. The World Health Organization (WHO) guidelines for pharmacological treatments for children's persisting pain acknowledge that pain in children is a major public health concern of high significance in most parts of the world. Views on children's pain have changed over time and relief of pain is now seen as important. In the past, pain was largely dismissed and was frequently left untreated, and it was assumed that children quickly forgot about painful experiences.We designed a suite of seven reviews in chronic non-cancer pain and cancer pain (looking at antidepressants, antiepileptic drugs, non-steroidal anti-inflammatory drugs, opioids, and paracetamol) to review the evidence for children's pain using pharmacological interventions.As one of the leading causes of mortality and morbidity for children and adolescents in the world today, childhood cancer (and its associated pain) is a major health concern. Cancer pain in infants, children, and adolescents is primarily nociceptive pain with negative long term effects. Cancer-related pain is generally caused directly by the tumour itself such as compressing on the nerve or inflammation of the organs. Cancer-related pain generally occurs as a result of perioperative procedures, nerve damage caused by radiation or chemotherapy treatments, or mucositis. However, this review focused on pain caused directly by the tumour itself such as nerve infiltration, external nerve compression, and other inflammatory events.Opioids are used worldwide for the treatment of pain. Currently available opioids include: buprenorphine, codeine, fentanyl, hydromorphone, methadone, morphine, oxycodone, and tramadol. Opioids are generally available in healthcare settings across most developed countries but access may be restricted in developing countries. To achieve adequate pain relief in children using opioids, with an acceptable grade of adverse effects, the recommended method is to start with a low dose gradually titrated to effect or unacceptable adverse effect in the child. OBJECTIVES: To assess the analgesic efficacy, and adverse events, of opioids used to treat cancer-related pain in children and adolescents aged between birth and 17 years, in any setting. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) via the Cochrane Register of Studies Online, MEDLINE via Ovid and Embase via Ovid from inception to 22 February 2017. We also searched the reference lists of retrieved studies and reviews, and searched online clinical trial registries. SELECTION CRITERIA: Randomised controlled trials (RCTs), with or without blinding, of any dose, and any route, treating cancer-related pain in children and adolescents, comparing opioids with placebo or an active comparator. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed studies for eligibility. We planned to use dichotomous data to calculate risk ratio and number needed to treat for one additional event, using standard methods. We assessed GRADE (Grading of Recommendations Assessment, Development and Evaluation) and planned to create a 'Summary of findings' table. MAIN RESULTS: No studies were identified that were eligible for inclusion in this review (very low quality evidence). Several studies tested opioids on adults with cancer-related pain, but none in participants aged from birth to 17 years.We rated the quality of evidence as very low, downgraded due to a lack of available data; no analyses could be undertaken. AUTHORS' CONCLUSIONS: No conclusions can be drawn about efficacy or harm in the use of opioids to treat cancer-related pain in children and adolescents. As a result, there is no RCT evidence to support or refute the use of opioids to treat cancer-related pain in children and adolescents.


Assuntos
Analgésicos Opioides/uso terapêutico , Dor do Câncer/tratamento farmacológico , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido
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